symptoms of celiac and gluten sensitivity

I look at these photos and start to feel lousy just remembering.

In the early spring of 2005, my body turned against itself. Actually, if I’m remembering correctly, it started gnawing at me years before. After a surgery and car accident in 2003, I never recovered. My energy flagged, my head ached, the injuries from the car accident lingered long after the physical therapists could explain. I felt rotten. And of course, this depressed me. I doubted myself, especially when the doctors couldn’t figure out what the heck was wrong with me. Each doctor passed me on to the next specialist with a little tsk tsk, seeming to imply that I was making up all this suffering. Or at least exaggerating.

I bet each of you reading has experienced that before. The medical profession as a whole still doesn’t understand celiac very well. Forget gluten sensitivity, which brings on many of the same symptoms of celiac without the long-term autoimmune disorder. Or those with gluten allergies. As my friends who are doctors or nurses have told me, they didn’t spend long on nutrition in school. There are so many more ornate and heroic diagnoses to make than simply “Stop eating gluten.”

When I was finally diagnosed with celiac, I read repeatedly that it takes an average of 11 years from the time of first symptoms to final diagnosis. 11 years. I think it’s down to about 8 now.

Even though I was horribly ill by the time I was diagnosed, not one of the doctors I saw suggested celiac as a possibility. Not even the gasteroenterologist. My stomach ached in pain any time I ate. My intestines were in searing pain. My brain fog made me feel dumb all day. I slept most of the time. I lost a lot of weight fast. My eyes were perpetually circled in darkness. And of course, given all this, I was lethargic, anxious about ever feeling well or getting anything done, and depressed.

I watched one episode of a favorite television show after another, then started on another show. I thought I would never feel well.

That photograph on the left was taken about a week before I asked for a celiac blood panel and stopped eating gluten. The photograph on the right was taken about six weeks later.

Pretty amazing difference, really. Internally, the difference felt like it looked. I was reborn, in a way. I had been not well for years.

If you have not been through it, you cannot comprehend the energy and compassion that shines from that time in someone’s life. Finally, you are well. Cartwheels and constant stories about the difference feel like the appropriate response.

 

Sometimes, however, I hear from folks who have read my story, here or in my first book, and they say, “But I can’t have celiac, because I wasn’t as sick as you are.”

I also hear, over and over at public events, when people introduce themselves to me sort of embarrassed: “I don’t have celiac. I just have gluten intolerance.”

People, I don’t think it matters what you call it. If your body does not do well with gluten, you are not less important for not having celiac. And if you have different symptoms than I did — like infertility or migraines or terrible skin rashes — you could still have celiac.

Did you know that there are over 300 symptoms of celiac? Each one of us suffering from it may have a different subset of symptoms. You could have joint pain. You could have bad diarrhea. (There’s a fun word for a food blog.) You could have tingling and numbness in your fingers and toes. You could have early osteoporosis. You could not be able to put on weight. You may weigh too much.

They can all be symptoms of celiac.

No wonder so many people with celiac remain undiagnosed.

1 out of 133 Americans has celiac disease. Officially, only 5% of those have been diagnosed. Of course, there are clearly plenty of folks out there who diagnosed themselves. Given that one has to have been actively eating gluten for the antibody test to be accurate, folks who have not eaten gluten for six months or more because they know how their bodies react aren’t usually willing to go back on gluten for six weeks for a test result.

Then again, some folks find themselves slipping and nibbling without that official diagnosis.

Also, you could have celiac without exhibiting any symptoms.

It’s only growing. A 2010 study published in Annals of Medicine showed that cases of celiac disease has doubled every 15 years for the past three decades. It shows no signs of stopping. Our family doctor told us that he rarely heard about celiac 10 years ago. Now, he receives 3 or 4 updates a day from all of his medical journals and sources.

Yet to be as well studied is gluten sensitivity. Now that there is so much more awareness of celiac than there was 10 years ago, gluten sensitivity is starting to be examined more closely. Often seen as the poor stepchild of a more important sibling, gluten sensitivity can have the same pernicious symptoms of celiac. However, as hard as it still is to get a doctor to recognize celiac, imagine how difficult it is to be validated with a gluten sensitivity diagnosis.

I do not understand why some folks in this society are so resistant to the idea that gluten could be hurting a good number of us. There’s nothing wrong with gluten, inherently. If I didn’t have celiac, and I could eat gluten, I would. However, so many of us are suffering for no reason. Why is the general trend toward doubting these people’s suffering? It’s all in your head.

It’s not all in your head.

Recently, Dr. Alessio Fasano of the University of Maryland School of Medicine’s Center for Celiac Research published a study that proved gluten sensitivity is a separate and recognizeable condition as celiac. Based on the data, the study suggests that as many as 18 million Americans suffer from gluten sensitivity.

18 million Americans.


One of you reading right now has celiac or gluten sensitivity and doesn’t know it. In fact, there are probably a number of you reading who have one of these two conditions and is suffering for no reason.

So, for those folks, what I’d love for this community to do is guide the rest of those reading.

What were your symptoms before you were diagnosed gluten-free? How did you discover you could no longer gluten? How did your life change after you cut it out? And particularly, we’d love to hear if your kids suffered from this? So many parents don’t know what ails their children.

Let’s help some more folks to be well.

 

 

 

526 comments on “symptoms of celiac and gluten sensitivity

  1. Chelsea LaVere

    I’ve struggled with stomach and skin problems since I was in my early 20’s. I just passed it off as getting older! Well, my symptoms were consistent– blotchy, rashy skin on my face, irritability that got worse, migraines that were out of control, stomach cramping and terrible gastro-problems after most meals, and severe fatigue. Within 3 days of giving up all gluten, EVERY single symptom I suffered with for years went away. It was rather magical, and I was kicking myself that I didn’t make the connection. The more you know, right? :)

    1. Chelsea

      I suffered for over 10 years with unexplained abdominal pain, migranes, I caught every bug that went around, anxiety, joint pain and the list goes on. My doctors assumed for years that it was a “female problem” and suggested a Hysterectomy when I was 19 years old.
      We didn’t want to take such a drastic action when no one really knew what the problem was so my mother and I went on a five year journey with naturopathic, and a variety of doctors until finally my curren practictioner ruled out a “female problem” from there we went on a journey of diagnosis’ and pain meds to no avail. Finally after finding your blog (I have never even heard of celiac before reading about you) I cut out gluten and have been extremely healthy this past year and a half. So healthy in fact that it has amazed my doctors and me. Every symptom I had suffered for over 10 year dissapeared and I haven’t look back.
      What amazes me the most is that I was told by three doctors I would need a hystorectomy and may never have children, I am now five month pregnant with my first child, it has been a healthy pregnancy and we have no problem’s so far. Nothing was ever wrong with my female organs but doctors were too blind to look beyond them with symptoms so vague. So I am so thankful to my mother for standing up for me when I was too young to know that doctors didn’t know best. And I want to thank you for your blog as I would still be suffering without your willingness to share. Thank you.

      1. Leela

        As a Naturopath and Holistic Nutritionist, this blog and the above comment, both bring tears to my eyes. I treat conditions like this every day, and it still upsets me the arrogance of some aspects of the medical profession, and the long term impact of this on many lives. Hysterectomy my god! I commonly hear of women being put on antidepressants for all these symptoms. Just yesterday my last client sat in my clinic very upset as she offloaded about her latest trip to her doctor about her stomach discomfort, the dr who told her to ‘trust him’ and that it’s ‘all in her head’ as he up-prescribed her antidepressants.
        ~
        Have just found this site, and will be including it in the list of recommended sites for my clients.
        Thank you <3 and keep up the great work~

        1. Anastasia

          I had a surgeon amazed that dr’s, to include my High Risk Ob’s, kept putting me on on anti-depressants for years for what ended up being Gallbladder Disease! Now I have a Vegan Health food store trying to help me after my surgery because I keep having severe GI episodes. They are wonderful normal people who just “Got It” & I was only in there looking for Soap for my cloth diapers, lol! I’ve also had teachers, bus driver, etc basically anyone who complained about his stench to write up a report to back up my son’s Food Intolerance. A supportive school nurse is important too. It worked, Nurse noted the before & after & I documented the test start& stop dates, no more problems with dr’s telling me no they will not give me a no “insert food here” slip because you NEED that item unless you’ve had a hundred tests that don’t always work. She’s got all she needs, How it effects him in school, to back up HER story. It happens a lot but it’s getting better. Slowly, just like us.

        2. Amanda Aldridge

          Wow, Leela. i wish I had someone like you that lived close to me. I was diagnosed with IBS after I had my daughter. The GI basically just ups some antidepressants every 6 months when it starts to get really bad. Before the medication I was naseous all the time after meals and couldn’t keep anything down. I lost about 20 pounds within a month and wasn’t able to work for almost two months. I really want to get off this medication so I will be trying the gluten free diet soon.

        3. Amanda Aldridge

          I forgot to add that I also had my gall bladder removed about 8 years ago and have severe acid reflux which I’m taking Zantac for on a daily basis but even that isn’t working anymore.

        4. Chrissy F

          Where to start. I am 44 and I have had stomach issues since my early twenties. Bloating, cramping diarrahia, I was diagnosed with IBS, 11 years ago i had my gallbladder removed. I finally went to a new Dr which was not only a internist but also a holistic Dr as soon as I told him my symptoms he asked my if I had heard of celiac. He tested me and it was positive. I have been gluten-free for 4 months and feel great. Just last night I went to a restaurant for dinner and ordered a gluten free appetizer and when it arrived it had pita bread I do know they make gluten free pitas so when I asked here if this was gluten free she said yes so I ate half of one pita got nervous and asked someone else to find out they were not gluten free (PLEASE be carfeul when eating out cause people do not understand gluten free they think no big deal) we’ll I had a killer headache within a half hour and looked 10 months pregnant night ruined. I am a very outspoken person and have no problem telling my friends and family of my condition. I do have friends that think it is not real or even if you have one crouton it’s ok we’ll as we know one crumb can set you off. I am happy to see alot of GF on packaging.

        5. alma

          I have a six year old daughter who became severely constipated when she
          was 2 and has had problems ever since. She spends hours on the toilet EVERY time she has a bm and cries, screams, sweats and shakes. EVERY TIME. It is really heartbreaking. She has been on miralax for years and gets 4 tablespoons almost everyday but that doesnt seem to make a difference. I mentioned glucose to our pediatrician but she didn’t seem to be interested in that. She recommended a gastrointerologist but I fear the emotional trauma that could come with sticking a camera or something in her
          daughters bottom down her th roat. Espicia
          ly since the painful bm’s allready pptake a toll on her emotionally. She has been diag

      2. Belkys

        Wow! I checking Celiac Disease because my Dr. requested a complete blood test and one of the things she wants to check is “Celiac Disease. ” I have been suffering more over 10 years with join pain, disgetive problemas, bruises, etc… everything I am reading here describe myself of what I have been going thru all these years. I have been given antidepresants, sleeping pills, pain pills, etc. Doctor’s have been telling me that I do not have anything. And like you I have been feeling impotent, depressed because the person that I am now is not me.

        I have not been diagnosed yet but I have all the symtoms..

        1. Parsnips4

          I have just found this blog after searching the web for more information on gluten free products. A friend mentioned to me that my symptoms are similar to Celiac so I thought I would check it out on the web. I have suffered with migraines and cluster headaches, stuffy nose but no cold or obvious allergy, aching joints, bloated tummy, burning red cheeks, dermatitis, low energy, foggy head (which often makes me feel stupid), all this since I was a child. Bloody hell. Last winter I was diagnosed as depressed one month and when the medication hadn’t worked a month later I was tested for vitamin D. I found out I had a vitamin D deficiency which is now sorted and I felt a bit better for a while but I still loads of the symptoms mentioned. I am considering asking my GP for a test.

      3. Chelsea

        I have been suffering with digestive issues since I was a child, most of that time I thought I was lactose intolerant. I am 26 years old now and I was diagnosed with IBS when I was 18 years old. Since that time I have had a colonoscopy (2009), endoscopy (2010), gall bladder x-rays (2010), blood tests for: celiac (2010), thyroid (2012), hormone secreting GI tumors (2012), you name it. EVERYTHING COMES OUT NORMAL. The main symptom of my life is that I can’t poop, plain and simple, 12 days can go by without any movement. My GI told me I have to drink Miralax EVERYDAY in my morning coffee (since align only works for 1 week and then stops completely), so I did for 2 years and became completely dependent on it. When I stopped taking Miralax last spring I instantly had bowel distention, no bowel movement at all, vomiting, etc. When I entered my 20’s my symptoms began to change, nausea that only goes away when I eat only to come back 30 minutes later. Days without going to the bathroom only to be surprised with random vomiting and diarrhea after dinner. Never feeling rested no matter how much I sleep, feeling so exhausted I swear my legs weigh 100 pounds each and I am not going to make it walking up to the front door of my house. Oh and can we talk about the rash! My rash first made an appearance in July 2012 on my tummy above my belly button spreading to my back. At that time I had stopped eating all dairy to try to rule that out first, the nausea did persist for awhile after, but my belly that looks six months pregnant after meals did not. My symptoms have been this extreme for the past 3 years, I have been told its stress, or my anxiety, or in my head. I was a vegetarian for 11 years and have since started eating meat to focus on eating whole natural foods (not soy chicken). After going to see either my GI doctor or my primary care doctor every week of this past summer I finally got to see a nurse practitioner who recommended I try the FODMAP diet (http://ibs.about.com/od/ibsfood/a/The-FODMAP-Diet.htm), which among other things eliminates gluten. Currently I focus on eating a gluten and lactose free diet and have been keeping to it for one month which has eased many of my symptoms, but not all of them. I did have soy sauce on Sunday (which has been my biggest slip up) and I have had my rash on my arms and face since (its Thursday). My sister is a nutritionist and has warned me that keeping to this diet has to be very strict and can take at least up to six weeks for symptoms to go away. I am patiently waiting to see if gluten is in fact the answer.

        1. tina

          listen. that no bowel moment for many days is nothing to mess with. i buried my mother this sept. she had issues with that her whole life, at least from way back when we were kids. dr’s told her to drink metamucil. she died because she had not had a bowel movement for a very long time. it became a hard fecal mass that sat in her bowel, and rotted away her intestinal wall. it perforated, and well. it was bad. she told me she had no pain the day before (just a little discomfort). the next day she exploded in pain. emergency surgery, and with 3 days, she became septic, all organ systems failed. she died. do i mean to scare you? yes. you are the only person who can advocate for yourself. you know your body. not having bowel movements is not stress, or in your head. i don’t want to see anyone go through what she did. fight for yourself… i wish you luck.

  2. Ki

    Migraines, migraines, migraines. I discovered I should go off of gluten when I went off gluten to support my sweetheart, who was trying to see if he should go gluten-free. After two months, I tested out gluten and had migraine symptoms within 30 minutes. I can eat very, very small amounts of gluten, i.e. a piece or two of calamari without an issue, but any significant gluten content brings on a headache within an hour.

    In my sweetheart’s case, his allergies flare up. I’m not sure what the medical science is that explains that, but when he “cheats”, which he does on occasion, he spends the next day sneezing like he has hayfever. If he doesn’t eat gluten, he almost NEVER sneezes. This is huge.

    Honestly, after the first trying month, our lives aren’t all THAT different. The local pub serves gluten-free pizza. What else do we need?!?! Yes, traveling is harder and we miss being able to buy bread (because the gums don’t agree with me, either). Other than that, after we made the change, unless there are special circumstances, life pretty much went back to normal with fewer bad side affects, i.e. migraines and allergy attacks.

    1. Erin

      Wow, my Doctor insisted that celiac had nothing to do with allergies, but I have noticed an improvement in my allergies since going gluten free. They aren’t gone, but they are so much better.

      1. Evan

        Your doctor is right, Coeliac disease isn’t directly related to allergies. However, by going gluten free you are removing a lot more than just gluten from your diet including a huge variety of artificial food additives and undeclared food processing aids that are in the foods that contain gluten. That most certainly will affect your allergies.

  3. a

    I realized I was gluten intolerant when I finally connected my aching, swollen joints (and headaches, foggy head, and sometimes days of intestinal upset) to eating gluten. Sometimes I still cheat — and I always, always, always pay the price, starting with prompt swelling in my fingers within minutes. My intolerance was unknown to me until I had a flare-up of what is likely Crohn’s, when eating just became difficult in general.

  4. Lauren Enochs

    I have Hashimoto’s Thyroiditis-it is directly related to gluten sensitivity. I have horrible hair loss, hirsuitism (unwanted hair in unwanted places), amenorrhea (lack of periods), infertility and skin rashes. I also have unwanted weight gain that I cannot get rid of to save my life. Going gluten free has not remedied these things, but I know that eating gluten will only make my thyroid worse and exacerbate my existing symptoms, so I avoid it at all costs.

    1. jessica

      Have you Gone to an infertility specialist? Almost all of your symptoms go with what I was diagnosed with. Pcos (poly cystic ovarian syndrome) u should also have ur blood checked for borderline high blood sugars.….one Pcos treatment is a drug called “metiformin”. Or if it’s really bad and u can’t seem to lose any weight even when trying to u should talk to your Dr about having gastric bypass. I was 240 down to 180 in 3months and have had completely normal periods.
      Good luck.

      1. Nicoly

        That DOES sound a little like PCOS (also very common) I was diagnosed with it pre-celiac and relied on a metformin and chlomid “cocktail” to get pregnant…worth looking into.

      2. Beth

        Respectfully, Jessica, I could not agree less on suggesting to anyone, especially folks that have celiac or gluten issues to have gastric bypass.

        Gastric bypass causes lifelong, severe nutritional absorption issues. I should know, as I had it 8 years ago. I only lost 60 lbs (gained 40 back), and it wasn’t until I developed severe pernicious anemia that they also found I had celiac. With major dietary changes, herbal and vitamin supplements, etc., I have dropped 100 lbs, but everything is 2 — 3 times as hard to “fix” because of the nutritional absorption issues. I also have an underactive thyroid and adrenal fatigue. Even top-notch naturopaths don’t know what to do with me because no one can tell you how much nutrition you absorb of anything you ingest after you have gastric bypass.

        If I could scream it to the world, I would: DO NOT have gastric bypass. The ONLY thing (weight-loss wise) the surgery does is FORCE you to eat less, and frankly, if you can’t do that on your own, then you won’t keep the weight off 6+ years out after your pouch has expanded. But what else does it do? It absolutely wrecks your insides and makes you malnourished. Look at most any gastric bypass patient 1 — 2 years post-op, and their hair is very thin, as that is one of the first signs of malnourishment. Other signs you can’t “see”, and docs don’t test for. My gastric bypass doc only said “take a multivitamin and B-12, and you’ll be fine.”

        To suggest something that creates nutritional absorption issues to someone who may have celiac (so, they ALREADY have absorption issues) is very harmful.

        1. Cindy

          Lauren,
          You certainly have several complex issues going on at once. I would certainly agree with staying far away from Gastric Bypass. A great place to start would be to balance your body nutritionally, putting the best food on the planet into your body, and cleansing your body of toxins and impurities at the cellular level; this will SHRED your body fat. I am one of the top nutritional cleansing coaches for a $300Million Health and Wellness Company and would be happy to chat with you. The top infertility specialist at Syracruse University Medical Center uses our system before medical treatments as well. You can reach me at:
          Cindy@setyourbodyfree.com

    2. Jasmine

      Yes, these medical treatments are an option, if you wanted to go a more natural route then diet change (No gluten, no sugar, no dairy), exercise, acupuncture, and herbs can also turn it around. It takes longer and more effort, but the results last your whole life as long as you continue to take care of yourself. I know because I did it myself and I treat many women with the same issues with acupuncture!

      1. kate

        It’s also worth finding a doctor who knows about natural progesterone treatment, I’m on natural progesterone for other reasons (oestrogen dominance) obut have read many stories of it helping women with lily cycsti ovarian. Alongside with lots of other diatry and lifestyle changes.

    3. Erin (Pretty in Primal)

      Hey Lauren! I have Hashimoto’s also (and I’m also gluten intolerant). It does sound like your Hashi’s is probably coupled with PCOS (the two of them tend to be interrelated).

      I’ve done really well on Datis Kharrazian’s Hashimoto’s protocol (it can also address the PCOS/insulin resistance thing). It addresses the underlying autoimmune issues– the immune system itself, gut healing, neurotransmitters, hormones, etc. I feel so much better now. More energy, WAY less brain fog, no more hair loss, hormones are slowly but surely normalizing (I wasn’t ovulating and had horrible monthly cycles), better skin…

      With the issues you have, it would be worth reading about a lower carb autoimmune Paleo diet (to help the insulin resistance causing the weight gain and hirsutism/hair loss as well as the Hashimoto’s.)
      Many gluten intolerant people also react to the proteins in corn and oats and some cross react to coffee. Cyrex Labs has new saliva panels that can tell how gluten affects you (where in the body) as well as cross reactions. I honestly feel best when I leave grains out of my diet completely (I use coconut and almond flours for baking/pancakes, etc).

      PS– for the hair loss (which I have also had in the past) I find that fo-ti (a.k.a. he show wu) works. It takes up to a month for the shedding to stop. I just stay on it now. Shen Min is a good brand. You might also try a DHT blocking combo of herbs, as well as D-Chiro Inositol, which is being used for PCOS type symptoms.

      1. Traci Bowman

        I have hashis and adrenal fatigue.…going to be going gluten free soon I’ve eliminated alot) .…I have horrible hair loss…I was wondering what you meant by ‘the shedding’ to stop??? My hair has gotten so thin it is horrible.…I will have to look up the things you have mentioned for hair loss as I have not heard of any of them…lol

  5. Jennifer

    I suffered for ten years with symptoms that, since eliminating gluten, have gone away entirely. I had an assortment of gastrointestinal issues, diarrhea, chronic indigestion, swelling in my face and body, weight gain, fatigue, blisters on my fingers and on the back of my hands, frequent fever blisters, weepy areas on my scalp, frequent illness in general, etc. I blame the gluten allergy on ruining my gallbladder, tonsils and severely compromising my thyroid. Since going on an exclusively gluten free diet a little over a year ago, I’ve lost at least 30 pounds — probably more, but it is difficult to determine now that I am in my third trimester. I actually gained my first pound for the entire pregnancy a week ago, so I suspect that I’ve lost even more weight in other areas of my body as my midsection has grown (a lot!) Interestingly, I am on medication for my under active thyroid, which was how I ended up finding out about my gluten allergy, and have not had to increase my dose since I started. I think that is because my body is actually continuing to heal. I’m optimistic that one day I won’t need to be on the medicine any longer.

    1. Nicoly

      Ruining your gallbladder? Did you have to have it out? I was diagnosed the same day with Celiac and an underperforming or sluggish gallbladder. They’ve recommended removal but I’ve asked if I can wait and see if going gf improves my gallbladder symptoms. Did that happen for you? Extremely curious. The Doctors have made no link between the two but I’m suspicious…

      1. Jasmine

        I have both issues also, had my gallbladder out just as I discovered gluten sensitivity. In retrospect, I DEFINITELY think they were related.

      2. Nikki

        You have to go with your gut on this one (har har.)
        I was 17 when i had my galbladder out, and they got it out only a few days before they say blood poisoning would have set in. My acupuncturist and chiropractor encouraged me to keep looking, but when we did an ultrasound and saw some polyps (that turned out not to be there once they got to the surgery), I made my choice to get it removed. I was only having 12%constriction after the CT scan, and I just had to.
        your body will tell you. mine was so exhausted by the time they FOUND something, I gladly took a “cure.” it wasnt a cure, but it also didnt turn into blood poisoning.… and it would have.

        1. Mandy Howerton

          I haven’t been diagnosed with anything but my best friend just went through some training for a certificate for her personal training business. She learned about gluten, etc and asked me if I would go on a Gluten-free 60 day diet with her. Well, I started reading up on this and this page (the comments specifically) have helped me see exactly WHY I need to do this. Anyway, I had my gallbladder out over 10 years ago and by the time I had it out, I was just as exhausted. I could not sit through a movie (theater, home, etc. Didn’t matter where) without falling completely asleep. Snoring and all. My back was in so much pain I went to the chiro and they couldn’t find anything wrong. For a year I went through this until I had to have surgery. I had two surgeries within 6 weeks of each other with several procedures in between trying to get the stones out of my bile duct. I have not been completely healthy since. I’ve struggled with IBS and depression and bi-polar and anxiety. Now to read this, it looks like my scalp problems can be blamed on gluten, too. I have those horrible weepy sores that cause my scalp to literally HURT. Wen is the only thing that has made it better. They’ve healed and my hair looks great. I strongly suggest it for everyone. I hope starting this new diet will help all these problems. It sure is looking like it will from what I’ve read. Thanks so much!

      3. jenny

        Nicoly
        I have celiac was diagnosed almost 9 yrs ago and had to have gallbladder surgery 7 yrs ago for a sluggish non working gallbladder it never got better only worse. They had to do emergency surgery. Toxins were going in my body from it. I’d say get it out if it doesn’t work. Lol good luck

      4. sara

        there is actually a direct correlation between celiac disease and cholestasis — a sluggish gallbladder. i was diagnosed with IBS 10 years ago, i think because the doctor honestly didn’t want to take the time to truly diagnose me. this same doctor this past year told me i simply had gas pains and to take some citrucil when i went in after my first gall attack. this same doctor told another girl who ended up having the same condition that the pain was all in her head.

        after a year of suffering through increasingly painful gall attacks, i was finally diagnosed with a gall bladder full of sludge that was only functioning at 4%!!!!! i had it removed two weeks later and thankfully my pain has ceased.

        given my various celiac symptoms over the years including diarrhea, migraines, fatigue, irritability, fibromyalgia, gas pains, and the list goes on, knowing autoimmune diseases run in my family, and now learning about the direct correlation between celiac and cholestasis, i have gone gf and it has been amazing the difference it has made! my fibro pain has diminished drastically, and i am now very thankfully not married to the bathroom anymore!

    2. Jackie

      Hi Erin
      I was having major flare ups with my gallbladder (I think it had a lot to do with the soybean oil in almost everything nowadays) and my doctor recommended removal. I don’t believe in removing parts of the body unless it’s life-threatening and after I do research. I opted NOT to remove it and instead started taking 1 tsp of red beet powder per day. (It’s not a sugar beet so there is very little sweetness to it). Within 2 months, my gall problems were gone. In addition, I stopped eating all foods that contain soy and soybean oil. It’s very hard but I’m used to a restricted diet for the celiac so I cook a lot at home. I am so happy I don’t follow everything my doctor recommends. They’re clearly not correct all of the time. Hell, they missed the celiac for 30 years!

  6. The Yummy Mummy

    You are such a strong and powerful voice for people who have Celiac, and for people just figuring out what works for their bodies and embracing that. I wonder how many people would’ve suffered in silence, or unknowingly, until you went out there and started writing about it, shouting it to the world. You go, girl. That has made a difference.

    That said, even though we Fosters seem to be just fine with gluten, since going Paleo, (no carbs, no/minimal sugar) we’ve dropped weight and feel better, have more energy. My skin is even a different, less pasty color. At the end of the day, that’s all that matters anyway — just that we feel more alive.

    Thanks for being a vocal champion of feeling alive, Celiac or not. xoxo

  7. Megan MacClellan

    I’ve been gluten-free for about six months.* I made the switch after horrible menstrual symptoms (nearly faint-inducing pain level at times) and persistent headaches, but even worse was my emotional instability and cloudy mind. I’m finishing graduate school and had started a relationship, read: stress. I assumed that my days of crying, even during fun times with my sweetheart was just a result of all of the stress in my life.

    Since I’ve stopped eating gluten (which has been an exciting and easy transition, big thanks to you Shauna!), my period symptoms have reverted to “normal”, I don’t want vicodin and don’t experience symptoms 3 of 4 weeks–only a few days! Headaches are very rare, and best–I only cry when it makes good sense to cry. No more random, aimless, endless weeping. Holy moly, that was annoying. *I’ve strayed from the gf diet 3 times. The first time all my headaches and laziness came rushing back in about 30 minutes. The other 2 times, the only response I’ve noticed was a Day of Aimless Weeping the next day. It’s hard to say if it’s related, but it feels like it is.

    I got the full gamut of tests for Celiac and I’m just “gluten intolerant.” I don’t care what I am really, I just like feeling better.

  8. danielle

    I discovered my gluten intolerance last year after suffering from what I can only describe as crippling stomach pain for weeks straight. This went undiagnosed through doctor visits, numerous test, an endoscopy with biopsies (oh joy), and finally a harrowing night in the ER complete with pokes, more tests, an MRI, and confusion. And after all that, not one of my so called doctors did a thing for me besides prescribing pain medication (one even had the nerve to suggest antacid). Still in the worst pain of my life, I finally took my mother’s advice (that’s right kids) and went to visit a naturopath. She suggested a simple allergy test which came back positive for a number of food allergies, including wheat and gluten. What do ya know? A year later, I can usually stomach one meal a week that contains gluten, but feel healthier and happier completely gluten-free. It is a very difficult transition but so so worth it. Thank you for all your great stories and recipes Shauna!

  9. Julie @ Culturesforhealth.com

    Our daughter didn’t have typical symptoms because we normally didn’t eat gluten so by the time she was diagnosed, her only gluten-exposure had been a little bit through breastmilk (I’d cheated a few times and had a burger, etc.) and secondary exposure (in the air, shampoo, etc.). She’d never directly eaten gluten herself.

    When she was 3 weeks old, we started having colic issues in the evening with her. Cutting out gluten, dairy and sugar from my diet seemed to help (she was exclusively breastfed). About a month later she started having horrible sleep issues. She would normally only sleep 30–90 minutes at a time (most often 30–60 minutes) and would require 30+ minutes of nursing to go back to sleep. Her only other “symptom” was a horrible animal-like noise she would make twice a day. There was nothing medically wrong with her. She was growing well, developmentally ahead of the game and was for all practical purposes a normal kid but I knew deep in my gut something was wrong with her. We say multiple natural-health practitioners (ND’s, chiropractors, etc.). More and more things were cut from my diet and yet she didn’t get any better (but I got really skinny!). Finally we saw a new ND who sees a lot of children with Autism and is very familiar with gut issues. By that point, based on my own research I was convinved it was some sort of gut issue. She ran some lab tests and sure enough full blown gluten-antibodies in a child who had never eaten gluten herself. She was 15 months old at the time. We went home and immediately got rid of everything in the house that had any gluten in it (including the shampoo). Within 3 days she was a different child–sleeping through the night. She’s never made that horrible sound since. We feel very very lucky to have caught it so early.

    1. Martha

      Oh my gosh! In reading this it took me right back to when my now 15 year old was a newborn. She would constantly nurse then vomit, sleep very little, and what really made me take notice, make what we called “wolf” noises when we’d lay her down. She never really slept through the night until she was 10. Like your baby, she was otherwise healthy and thriving. The doctor diagnosed acid reflux and prescribed Zantac (I think that is what it was). It was a strong peppermint liquid that was horrible. I stopped giving it to her because she hated it and it didin’t seem to make any difference.She was recently diagnosed with Hashimotos. She had been feeling depressed an anxious and was put on an antidepressent. I insisted that the doctor run a full blood workup where the Hashimotos was diagnosed. I only wish I had known then what I know now. We are now working (and it is work!) on being gluten-free. I asked the doctor about the relation between Hashimotos and gluten and she didn’t feel there was any. This only strengthens my belief that you have to be proactive when it comes to health issues. I’m so glad I saw your comment.

  10. i-geek

    Migraines. Gas and bloating. Alternating constipation and diarrhea. Exhaustion. Eczema. Iron-deficiency anemia. Strange food cravings and intense hunger (from nutrient malabsorption). Brain fog. Scary mood swings. Upper respiratory allergies (aka “seasonal” allergies). Tree nut allergies. Mouth sores. Dairy/alcohol/cruciferous vegetable intolerance. These have all gone away since diagnosis (1.5 years ago) and come back only when I’m glutened.

    Spots on teeth from weak enamel. Receding gums. Infertility. These have not gone away. I’m a little afraid to find out what else 15 years of undiagnosed celiac disease has done to my body. I can only hope that by going gluten-free at age 31 I’ve undone enough damage and have prevented any further.

    1. Carly

      wow that first part of your post sounds like you were talking about me. I have not been tested but i’m sure i’m gluten intolerant. I’m “mostly” gluten free… I don’t buy bread or anything with gluten and I basically stopped baking anything, but when I’m out I do cave in and have a burger or pizza once in a while. And pay the price later…

      It’s interesting how many different symptoms there are and how it affects everyone differently. Thanks for sharing your knowlege and recipes!!

    2. fragilemuse

      Wow, the first part of your post sounds like me as well! I had no idea until now that it was possible to have a cruciferous vegetable intolerance. Before I cut gluten out of my diet almost 3 years ago I would get horribly bloated and have intense stomach pains every time i ate broccoli and, to a lesser extent, cauliflower. They still bloat me slightly but not as bad as before. I used to have really bad reactions to alcohol as well. Just a few sips would cause me intense muscle pain and a stabbing feeling in my stomach. That has also gone away since I went gluten free.

    3. Consuela Morales-Streit @ gflivingla.com

      Believe me.. The early you catch it and stop eating gluten the better. See my post listed below. Sometimes the gluten can cause so much damage that it is not reversible. Any of you heard of ataxia? My body is on the mend, but learning about ataxia and knowing what gluten has done to me makes me want to NEVER touch the stuff again.

    4. Dawn

      These are all similar to what caused me to decide to go gluten free without a blood test or diagnosis. Since I travel for a living, I sometimes inadvertently get “glutened” as (appallingly) most cooks, chefs, and wait staff are unfamiliar with the needs of someone with either an intolerance or celiac disease.

    5. Coastalstorm25

      i-geek…i know exactly what you are talking about! Im not celiac but I believe I have an intolerance …so I have cut it out for 3 weeks now..I am still getting migraines.. so I am hoping they will go away after a couple of months.…Ive done everything to get rid of them…so this is the final straw..I hope this is it :)

    6. Beth

      For your teeth and gums, try oil pulling — that has been the only thing that has helped mine, even after being grain free for 2 years.

  11. Sahnya

    Two plus years ago my then 5 year old started having daily migraines (yes, daily). He had stomach pains, bloating, fatigue, and bowel problems as well, though the main complaint was the headaches. We went to various doctors, have many tests, and tried multiple medications. Nothing seemed to work. Doctors started suggesting that since he could function pretty well while dealing with the migraine that we just try and make do.

    Several times I asked about the possibility of the symptoms being food related and was a flat no from one doc. Another doctor responded by saying if it was food related it would need to be from something he was having daily. Wheels started turning, this sliver of possibility was all we needed.

    Last spring we eliminated some major allergens for several weeks — gluten, dairy, and eggs. After a few weeks of eliminated those items my then 7 year old still was feeling rotten, but was willing to try anything. We started a full elimination diet based off the book Whole Life Nutrition. Our whole family did the diet and all summer slowly added foods into our diet. I religiously kept track of the foods my 7 year old ate. His bloated stomach shrank, his symptoms started to stabilize with fewer big flair ups.

    In the end we were able to discover several key foods by doing the elimination diet as well as doing some delayed allergy testing. These include gluten and soy. It still took seven months of being GF before he stopped having stomach pains and diarrhea. Now, a year later, his digestive system is good and migraines greatly reduced. Soon we will once again experiment with doing an elimination diet in hopes of discovering if there is still another food that seems to be triggering the headaches.

    The rest of us also feel better without the gluten. I can look back at my health history and see how gluten has not been a friend to me. My husband has noticed how if he eats a bite of glutenous bread he gets heartburn. My kindergartner and youngest has become an advocate for healthy, gluten free foods.

    When beginning gluten free eating there is a steep learning curve, but soon enough, it gets to be easier and easier. .…really! Oh, the doctor that originally said food could not be related to the migraines now is a full believer. Progress may be slow, but it is happening!

  12. Courtney Walsh

    I haven’t been diagnosed with celiac, but have been diagnosed with Hashimoto’s thyroiditis, which is also an autoimmune disorder triggered by food allergies/sensitivities. I have many of the symptoms you describe–the join pain, the weight issues, the cramping, stomach pain…and yes, lack of energy. But since gluten isn’t officially my issue, I do slip and nibble here and there… and I’ve started to notice the pain (in my neck mostly) comes back. It can’t be a coincidence. I love your blog and your willingness to search for answers and empower the rest of us to do the same.

    Thanks you.

  13. Ann

    In 2008, I went to a doctor because I’d spent 2 years trying to lose weight, and had made no progress despite doing all of the “right” things. My father has celiac disease; although I’d tested negative for celiac, I had a hunch that something food-related was going on (this after ruling out thyroid, etc).

    I was diagnosed with non-celiac gluten intolerance (and dairy, egg, and soy intolerances, too). We didn’t catch that I was also yeast sensitive until about 2 years later.

    When I went to the doctor, I really believed I was asymptomatic. In hindsight, I know that weight, a rash, and digestive distress were all symptoms, albeit relatively mild ones. The most interesting of these was a recurring, annoying-but-not-a-big-deal rash (which started in 1992!). I have no idea if I was gluten intolerant and undiagnosed for that long (16 years!), or if the rash is just my body’s way of reflecting a compromised immune state, and was triggered by different things at different times.

    I do know that I don’t have the rash when I don’t eat gluten, dairy, soy, eggs, yeast … but I have to stay away from all of them for it to go away completely.

    And that’s my one tip: if you are still experiencing odd symptoms — even if they are mild, even if they are not that inconvenient — keep exploring. My rash didn’t subside until I’d found *all* of my sensitivities. To this day, I get my first hint that I’ve gotten something that I shouldn’t have when I start itching …

    1. Clacey

      Ann — A year and a few months ago, I found out I have sensitivities to all the things you list too! Did you find that eliminating all of things at once made you at first feel energetic and then a little depleted? What did you add to make sure you were getting the nutrients you needed in the absence of those found in your food with gluten/egg/soy/dairy/yeast?

      For the benefit of all reading the blog and comments, I had NO idea I had a gluten sensitivity (nor did I know I had them to egg/soy/dairy/yeast!). I had other allergies that caused throart-closing, but I suspected that was to live cultures; I had gone down to eating nothing and just adding things back.…so I knew more of what I could eat rather than what I could. Nonetheless, I lived this way adding foods back in as I went along. I didn’t think of any symptoms other than throat-closing or hives…i.e. I was only worried about emergencies, not whether eczema was acting up, etc..

      So my symptoms before discovering the gluten sensitivity were eczema and the associated itching that went along with it. I would also get this wheezing occasionally here and there (maybe once every few years?) around early Spring which lasted for three days and other occurrences of it here and there — which I attributed it later to dust or the food allergy that would later get more severe and go to full blown throat closing. I just assumed that this was what it was; I could have been wrong. Whatever the case, gluten didn’t bring it on. I think now that gluten has just weakened my system over the years and may have made me more susceptible.…not sure yet! I came up positive through skin testing (many years ago) of being allergic to a lot of trees, some foods (that I ate) and some animals. The foods I tested positive too were ones I could eat with no obvious symptoms. My eyes got itchy A LOT; I had since found antihistamine eyedrops which I still carry with me despite my resistance to just about every other Rx drug around.

      I started having problems where my vocal chords would close all of sudden; it happened three times over the course of about two years. Scary! I knew it wasn’t my allergy — this was muscular. It would usually last less than a minute but was terrifying — no air in nor out. Doctors didn’t seem to know about it — I asked several. After months of asking and searching online, I finally heard the phrase “laryngeal spasm” which I googled and came up with a website that discussed VCD (Vocal Chord Dysfunction). I found a specialist (ENT) who said yes that’s what it is; but VCD can be caused by any number of things. The ENT said for me it was likely silent reflux — YES! Like babies get…which sometimes causes colic in them?.…It goes undetected often because sometimes you can’t even feel it and nothing is coming up, etc.. It’s higher than heartburn, which you feel. So basically, I had had silent reflux which was aggravating my vocal chords for years. Perhaps it lead to weaker chords, not sure, that part I’m still working out. But one thing that happens with this “high up” reflux is that it hits the chords and sometimes it causes them to close. Thought my doctor simply told me to avoid acidic foods, a lovely person online told me to test for gluten; we spoke indepth about all I had experienced.…I said it can’t be gluten. Well, I tested — and through stool testing, not blood tests which can give you a false negative — and not only was I sensitive to gluten, but also found out soy/yeast/egg/dairy were also culprits. I gave up gluten first and felt more energy very quickly; I gave up all but dairy within months, and then dairy soon after.…all over the period of 3 months or less.

      The result, I felt more energy for a while, but I don’t think I added enough back in. Within four months I noticed I had lost a bunch of hair; it was hidden behind my ear; I was in shock. I had cortisone shots to get it to grow back. That was a year ago; I’m still seeing strips where my hair is falling out. I really think it’s nutritionally related. We are still trying to adapt to the gf/df diet, and it has been difficult finding organic and non-GMO foods that fit the bill.….unless everything we make is from scratch.

      My husband and kids tested a year later; low and behold my husband who eats everything has a celiac gene and a gluten sensitive gene; he gave up gluten and the headaches he had since he was tiny were gone in less than three days! Sinus issues and the need to hit the bathroom multiple times and for a long time disappeared; he also said he had more energy and no brain fog. He never thought anything of these symptoms — he thought they were just the way he is, etc.. One of our kids has his celiac gene and my gluten sensitive gene; he also no longer spends much time in the bathroom, is not gassy either. He also had dry skin on his arms which you could feel but not see…not eczema but dry patches. We gave up dairy and — gone! Our other (breast-fed) child stopped snoring within a day of me giving up dairy.

      I’m still struggling, though. I still breast-feed, so that may be part of it, but this hair loss thing is really bothering me. I also notice that my arms and hands fall asleep more often when I’m lying in bed, and I notice pain here and there in some of my joints (ankles calves wrists) at times. What is that?!

      And overall, I think SUGAR plays a big part in the Vocal Chord reactions — if I overdo it on the sugar, I can feel that feeling of possible vocal chord threats. And, I also notice canker sores in the mouth after eating sugar.

      Eczema has been minimal after going gf/df/sf/ef/yeast-f!

      HTH. Thanks for the blog!

      1. boispw

        I’m fascinated by your suggestion that the sugar affected your VCD. My daughter was diagnosed with asthma at age 8, but by age 10 we realized she had both VCD and asthma. I didn’t know about Celiac, but I had suspicions about wheat. Finally when 14, her iron had dropped dramatically and she couldn’t sleep, had headaches daily and even developed a stutter. Iron shots seemed to eliminate the symptoms (including the bad stutter!), but her iron kept dropping after the shots. She tested positive on the Celiac blood test and on the endoscopy/biopsy.

        Before starting the gluten free diet we did a baseline blood test for everything. Iron was dropping fast again and zinc had dropped substantially out of the normal range. She spent 3 months on a standard gluten free diet which essentially involved swapping out gluten grains with non-gluten grains. My daughter was ridiculously diligent. We even bought the Elisa tests to test some products for gluten. In 3 months her zinc had dropped to almost zero (1.7 versus 11.5 being bottom of normal). Ferritin (iron) was dropping 1unit per week (faster than ever!) B12 was dropping too.

        We then took drastic steps: we wanted to reduce phytates, so we eliminated all grains and reduced legumes (but allowed sprouted rice, sprouted quinoa and sprouted lentils). We reduced sugar to minimal amounts. We eliminated or reduced industrial oils like sunflower oil, canola oil etc. We added probiotics and prebiotics and fed once a week calf’s liver with lots of onions and garlic pills. We upped the yoghurt and a supplement called lactoferrin to help iron and zinc absorption.

        In 6 weeks we re-tested blood for b12, iron and zinc. The results were beyond our wildest expectations. Ferritin went up 15 units, the zinc went from 1.7 to 14. Even the B12 went up noticeably.

        So, I don’t know which aspect helped the most or whether they all helped. My guess is that all of those things did, but the sugar aspect really interests me. It’s taken me a long while to come to the realization that anything that causes overall inflammation has to be dealt with; sugar is certainly one of those things. Recently there was a very high level conference in NZ suggesting that asthma might be the result of overall inflammation rather than just bronchial inflammation. It’s interesting that my daughter has now stopped her asthma medication and hasn’t had a VCD episode. Still too early to tell, but I’m guessing that sugar was one major component in that whole jigsaw puzzle.

      2. Kayla

        Reading this article brought tears to my eyes, I’m currently getting checked for celiac. Had my blood work today. My symptoms are bloated stomach (I’d look 20 weeks pregnant when I eat bread foods), nausea, pain & discomfort in my stomach and ribs, I get migraines & foggy brain (which makes me feel EXTREMELY stupid) this last symptom the fogginess I didn’t know was a symptom of celiac until reading this article and I just thought my foggy brain was due to just getting older and I’m only 21 years old. So to find out this is a symptom makes me feel relieved! Thank you!

  14. Melissa

    Seizures, massive forgetfulness, photopsia, brain fog, massive fatigue, headaches and generalized pain, everywhere, all the time. We attributed everything to lupus (diagnosed in 2005), but I kept getting more sick even after blood tests showed my lupus had gone into remission.

    All my symptoms lessened after I was diagnosed with Celiac and went gluten-free, but nothing completely disappeared. The doctors think the damage to my system was so extensive that the symptoms will never totally go away. I’m just grateful that I’m better than I was. I haven’t felt this good since middle school.

  15. stephanie karab

    I had symptoms for over 1 year before a natrapath suggested I go on an elimination diet. I had severe achy and painful joints in my legs and arms. Since I already had Crohn’s disease, I was dealing with that already. I would make it through working all week and 3 weekends out of a month, I was bedridden for the weekend. I was completely exhausted and felt like I had the flu. This went on forever. I thought I might have fibromyalgia. Now, I feel so much better, but I have put on a great deal of weight. I don’t eat many gluten free breads, except UDIS. But, I know that all the starch in them makes them calorie dense. It doesn’t seem to matter what I eat, my weight is out of control ever since I was diagnosed with Celiac.

    1. Amy

      I too have gained 22 lbs since quitting gluten… but I’d never go back to being so sick! Can you try swimming for exercise? It’s easy on the joints and feels great.

  16. Lindsey F.

    Terrible skin rashes that no doctor could explain. I self diagnosed after reading an article in Prevention magazine. I gave up gluten products, citrus, milk products, and more. It took about 3 weeks before skin rash went away completely — that was 10 years ago. After a year or so I slowly added back some items but whenever gluten was involved, I would get a rash again. I thought I could handle oatmeal but I have noticed since i stopped eating oatmeal for breakfast that a mucoidal cyst, related to arthritis has almost disappeared. I’m so grateful for blogs like yours and the fact that gluten-free products are becoming more mainstream.

  17. Cass

    Mine were similar to that of Chronic Lyme disease. Chronic fatigue and pain. Went from doing triathlons and century bike rides to having problems walking up the stairs and to sleeping with a queen sized pillow-top (not comforter) folded in half under me and still waking up several times a night in pain. Diagnosed with Lyme — heavy antibiotics worked to relieve most of the pain, but not the chronic fatigue. Dr’s aren’t sure why the antibiotics helped. With the level of antibiotics I was on, stomach issues were expected. By the time I was diagnosed with celiac I was very malnourished and underweight, but still racing very very slowly. Not all my doctors think I ever even had Lyme. Lyme is tricky though and may have triggered the celiac. Nutrition shots and an iron infusion helped.

    1. Laura

      Were you on a tetracycline for the Lyme? Tetracyclines (oxy, doxy, etc.) actually have a potent anti-inflammatory effect that is very poorly understood. This has only been recognized pretty recently, I think, and they are working on figuring it out. That would explain why the antibiotics appeared to help, without actually having an antibiotic effect.

  18. jenn cole

    i shit my pants. seriously. i’d been having digestive distress for a long time. diarrhea. gas. bloating. then one day i was out with my then-boyfriend looking at apartments. we were walking down the street from his car to the apartment building, on our way to the romantic moving in together moment. as we were walking, i thought i had to fart. we were on the sidewalk. outdoors. he was a bit ahead of me. i braced myself to try to do a quiet little fart that no one would even notice and…the fart was what some people jokingly call a shart. (shit + fart = shart!) yes, i literally shit my pants. mortifying. i had to tell him, have him take me home, clean myself up, cry in embarrassment. luckily he was a really good and understanding guy. i rode home sitting on my hip, trying to not let what was in my pants spread. it was awful.

    i am not good at keeping gluten-free. i also have weight gain, i think from being malnutritioned my body pulls in extra food. i’ve also had dishydrotic eczema, which looks a lot like poison oak or ivy, itches, oozes, and has made my hands look years older than i am. i am periodically depressed, which sometimes seems directly related to gluten consumption. i think i’m long overdue for being more committed to being gluten-free. i know when i am, i feel better.

    1. Sandy

      Well Jenn, unfortunately you are not alone. The year prior to me quitting gluten I did that not once, not twice, but 4 times. I also had many episodes of uncontrollable runs that made it impossible to leave the house. I had been helping a friend with his garden that summer, just a friend, mind you, not even someone I would want to share that intimate of details with!!, and I pooped my pants in the middle of the day IN THE GARDEN and had to go home. He couldn’t figure out what had happened until I ‘fessed up’ the next day. Embarrassing, yes. Until I quit eating gluten I had diarrhea for literally 20 years. For at least 12 of those years I had it EVERY SINGLE DAY. I was on medication that I had to take every single day just to function but I still had the uncontrollable runs and it was getting worse. I also had many many female problems that resulted in a much wanted hysterectomy before I was 40. Then I was diagnosed last year with a rare autoimmune disease called Mixed Connective Tissue Disease. I have had chronic pain since I was about eleven years old and I have been called a hypochondriac my whole life. I suffer from depression and anxiety problems, peripheral neuropathy, osteo arthritis, scoliosis, tinnitis, gas, bloating, skin problems, allergies, and many other ‘little’ things. The last straw was that a year ago last spring I woke up covered in hives. Not the little guys that look like mosquito bites, but the ones that are so big and numerous that my whole body was covered and looked like one giant welt. Even in my mouth, bottoms of my feet, hands, hair, my whole body. The pain and itching was so intense all I could do was lie on the couch and every time I woke up I took enough benadryl to knock me out again. I felt like someone was peeling my skin off. I was in the ER twice and got steroid shots and antihistamine shots and it didn’t even make a dent. In desperation I looked up ‘allergies’ on the internet. One prevailing theme kept popping up: Gluten intolerance. Or at least that was one that I could link to my family history. Every list of symptoms was everything me or someone in my family had, plus I have an aunt who was diagnosed with Celiac Disease. NOT ONE MEDICAL PROFESSIONAL recommended that I quit gluten EVER. I am certain that I spent the first 53 years of my life ruining my health with gluten and that now I have permanent nerve and tissue damage. Thank God Shauna is there. She is one of the few voices of reason I trust, and I know that her recipes will ALWAYS work! God bless you girl!

      1. sandi

        OMG.…This could be me. I have probably been gluten intolerant my whole life. I had female problem from the very beginning. I had a period every other week or so. I had terrible stomach pains and couldn’t leave the house for fear of messing myself. At 40 a saint of a dr suggested a hysterectomy.… I was thrilled!!!! I played around with Atkins diet for a few years, lost weight and the stomach problems for the most part. As soon as I stopped low carbing all of it started up again. Drs. acted like they thought I was just a complainer and couldn’t take pain. I’ve had a bunch of studies done.….No one could find anything wrong with me. I know it’s not normal to have to stay home for fear of not being close to a bathroom. I would eat and be sick.…..for hours. Last year my niece was diagnosed with gluten intolerance. We talked alot about it. I read about it. In Dec.we were on our way to Disney World. We had to stop three times for me to get to a bathroom after breakfast. I decided then, that I would cut the glutten NOW! I had a great time at Disney because they cater to glutten intolerant folks. They had food for me everywhere I went.….including Emirl’s. I have been glutten free since then. I’ve lost 25 lbs and I feel so much better. I still get gluttened when I eat out sometimes. The least little bit will get me going again. I used to keep Imodium folks in business. I still carry it but rarely have to use it. I don’t eat out much because I will do all I can not to feel like that again. It’s hard for me when I don’t prepare my own food. I think cross contamination is the problem eating out. I just discovered Gluten Free Girl and am so excited.

  19. Jenny N

    I was just 16 (now 26) and I kept getting these horrible skin rashes. And some were more than just rashes, I got weird blood blisters on my hands and feet! And they hurt! It hurt to write notes in class because of the blisters all over my fingers! I was passed from doctors to naturopaths to allergists to dermatologists. And finally after almost a year (my whole 11th grade school year) we were able to get into one of the best dermatologists in the country! For those of you who live in Washington State, it’s Dr. Valentine, he’s awesome! He took one look at my hands and said I’ve seen this once before in my career. He took some biopsies (which hurt really bad on hands!) and two weeks later I had my answer. Celiac.

    Finally not only were my weird skin conditions explained but all my tummy aches growing up were too! Dr. Valentine turned to me after explaining what this diagnosis was (he actually looked at me a 17 year old, by then, and not my mom sitting right next to me) and said you have two choices: There’s no cure or really any medications you can take but there has been some research using the same medication leprosy patients use so you an take that for the rest of your life and see what it does, or you can go gluten free. I said I think I’ll stop eating gluten thank you. And he smiled and said good choice.

    I wasn’t having as many gut problems then, so being that I was a teenager and went off to college just a year after my diagnosis I cheated a lot, after a few years I finally started paying for it, not only would my skin break out but I get really sick too. So just because you “only break out in a rash” doesn’t mean you can brush it off, it still affects your gut if you have Celiac sprue! I haven’t intentionally eaten gluten for five years now and I feel so great! Food isn’t my enemy anymore, I learned how to love what I can eat and honestly just looking at “normal” bread makes my stomach hurt and my whole body feel itchy now!

    So please please please if you suspect you have Celiac or a gluten sensitivity keep at it with the doctors! you’ll find the one good one out there who won’t tell you you’re crazy and it’s just in your head, I promise! And don’t worry, you’ll make it!

  20. Ellie

    my mom was diagnosed almost 5 years ago, and it was as simple as mild heartburn. and i’ve just felt crummy lately. haven’t been officially diagnosed, but when my mom was, my siblings and I were tested and they said i’m ‘on the verge.’ so I’m taking a blood test soon to see if things have changed. hoping so!!

  21. grace

    Meghan, your emotional symptoms resonate so strongly with me. Besides being chronically underweight, I suffered from the usual intense stomach pain and lack of energy. I’m really not surprised that this lack of energy and general malaise results in emotional upset — it’s so hard to be happy when you’re constantly worried about how you’re going to feel after eating a meal with a friend, especially when doing so is such an important and enriching part of life. Even more than reducing my physical symptoms (I still have a sensitive GI system, but nothing like before) this is what has made the biggest difference to me after going gluten-free: knowing that I don’t have to worry about being ill every few hours, not being afraid to make plans in case I suddenly am too exhausted to follow through.
    I was diagnosed with celiac in my second year of university, and the change in my ability to concentrate is also reflected directly in my marks. I went from getting C’s to getting A’s almost immediately after the diagnosis, a small testament to how debilitating it can be to be ill all the time. So many things have changed for the better!

  22. Jessica Seguin

    I had struggled loosing weight, even when I was working out. I had always thought maybe I had an allergy to beer. And I started to get weird rashes in very weird places, so I cut beer out. It seemed to get a tab bit better, but not all the way. My son had bad excezma(sp) and colic and other issues. Bottom line I heard about gluten sensitivity and started cutting it out. I couldn’t believe how much better I felt! I am working on dairy, but just can’t seem to give that up(I heard many with gluten sensitivity had one to dairy as well). I feel so much better when I don’t eat gluten, and my son and my moods are much more even keel as well. :)

  23. Tera

    I was diagnosed with Celiac disease 10 years ago. My dermatologist actually discovered it after doing a biopsy on my “acne” that popped up one night out of the blue and lingered for 6 months even after the harshest of anti acne meds. The biopsy revealed that my acne was DH. I had been dealing with horrible stomach aches, fatigue and headaches for years and doctors always said I had a nervous stomach.After my Derm. gave me the results of the biopsy, I scheduled a intestinal biospy with my gastrointestinal and he confirmed that I did have Celiac disease. I was put on Dapsone to help with the issues until I was 100% gluten free and symptom free. Now, 10 years later, I have my own blog about fitness and living Gluten Free — my gluten free figure.

    1. Sandy

      What is DH. My daughter has been to the ER at least 5 times within 8 years for stomach pain. They always thought it was appendix but sent her home. On the 6th trip they removed her gall bladder stating it was heavily scarred and filled with stones. Six months later she developed samonilla poisoning. Two weeks later she developed a “New Daily Persistant Headache” which she has had continuously for almost 4 years. Three different headache centers confirm this headache diagnosis. Three weeks ago she had the same stomach pain and nausea that sent her to the ER the past 6 times but this time it won’t go away. She is now attempting gluten free diet. I have a gut feeling they are all related to glutten. Please let me know what DH is. Thanks

      1. Dimmie

        Oh my god. I am nearly in tears reading this. I’m 24 years old, and as a child I was in and out of hospital over and over again for crippling stomach pains. No one ever knew what it was that was wrong with me, and they removed my gallbladder (full of stones) when I was 14. I have thought my entire life that I was alone, that there would be no answer, that no one else had suffered this way.

  24. Katie

    I was officially diagnosed with celiac after a doctor tested my hemoglobin levels on a routine appointment and discovered I was extremely anemic (iron-deficiency anemia). I had ignored my other symptoms as a part of life (losing 10 lbs in a year for no reason, daily stomach aches, and the inability to exercise)–in hindsight, this was pretty silly! Now (almost two years later!) I can run 5Ks 3 times a week and never get a stomach ache-I feel so grateful every day! I cook, I live, I love–my diagnosis changed my life for the better-as it has many of us in our growing community! As a medical student, I hope to continue educating my friends and colleagues in the medical community to keep increasing our ability to diagnose gluten sensitivity/intolerance/celiac!

    1. Tracy haughton

      Thank you for your commitment to educating the medical community. We need more medical “insiders” telling their stories to their colleagues. I wish doctors would read collections of people’s experiences with recovery from gluten like this one.

  25. deborah o'hara

    shortly after the birth of my first child, my stomach began to blow up like a football for no obvious reason — when i say blow up, i mean people i KNOW were regularly expressing shock asking me when i was due to give birth again.

    over the years it continued and i visited various gp’s asking for help. most of them treated me simply as a silly vain girl who couldn’t come to terms with the after effects of childbirth — especially as i produced another two babies over time — and some of them mumbled about mild irritable bowel and told me to try avoiding spicy foods. the only one who ever even bothered prescribing me anything sent me home with peppermint capsules. meanwhile, the blow outs got more and more frequent and terrible — i and i mean TERRIBLE flatulence began to accompany them. flatulence that lasted for hours and sometimes even days on end — uncontrollable, obvious and socially crippling.

    i was also well above my usual weight and my previously very strong and healthy teeth were inexplicably crumbling away at a rate of knots. i lost 5 teeth and have a good three more that aren’t going to make it much longer.

    and then about 2 years ago — nearly 15 years in — i read an article on gluten intolerance and decided to try cutting out wheat.

    et voila! — fixed! just like that!! no bloated, distended and painful stomach, the excess weight literally dropped off me within weeks and, best of all — no more hideous farts!

    after several months i did find that the bloating and wind were creeping back on occasion, so i looked further in to coeliacs disease and found that i needed to ditch the other gluten grains too, so i did and of course it worked. literally life changing stuff :)))

    i have been back to my gp to tell them the wonderful news and they didn’t even bother to write it in my notes — to them i must still be the silly faddy girl they refused to help in the first place. shame on them, but no matter — i’ve healed myself! it does make me sad for all the other coeliacs queuing up to see them behind me, though. i’m glad that the media is starting to pick up on our plight and hope that the time when early diagnosis through an interested and educated health service is a certainty isn’t too far in to the future.

    shame about me teeth though, eh? … :(

    1. Dawn

      I’m there with the gas being “socially crippling”! I can’t seem to find the final culprit(s) that bring it back from time to time. But I’m working on it.

      1. charis

        oh do I know that one. Gas that leads to having to isolate yourself from being around people. I am now gluten, dairy, and soy free and sometimes still will have bouts of gas problem. Much much better gluten free. I am experimenting with food combining, take VSL#3 probiotics (these do help), chewing my food well, not eating while stressed out and enough fiber daily. I know, long list but I am so sick of bloating and smelly gas. I would run into a store and know I had only 15 minutes before I had to run back outside again. They propably thought I was shoplifting. If I wanted to go to the movies I had to plan way ahead and not eat for 6 hours before. Then of course when I could eat I would go hog wild. That causes a bunch of other problems.
        I did the DNA test (because I had already gone gluten free for a few weeks) and it came back with positive for having both genes putting me at a 14x higher risks (very high risk) for developing Celiac disease. Even though I had a fecal fat test result of severe malabsorption and many other symtoms of Celiac my doctors tells me I don’t have it because my blood test is negative and my endoscopy was negative. It is wierd how that messes with your mind.

  26. Kirsty

    I’ve been gluten-free for over 12 months now and I’ve never felt better. The only issue I’ve had is feeling quite I’ll for a couple of months over Jan/Feb and I figured out that this was because I was contaminating myself with a hand cream I was using that had wheat in it!

    My symptoms… we’ll I thought I was having a breakdown of sorts. I had an incredibly sick child for many months and put down my exhaustion and constantly feeling nauseous to that. Then after he started getting better and I didn’t I thought I was having a breakdown due to all of the stress.

    My Dr is fantastic and ran some tests which showed I had a massive iron deficiency and an absorption problem. I would say that eventually she would have probably tested me for Coeliac but I found out I had it when my sister was diagnosed with it. I mentioned it to my Dr, she ran the tests and viola I had one of the highest auto immune responses she’d ever seen and most definitely had Coeliac Disease which was confirmed with an endo.

    Being gluten-free isn’t hard but it does require two things — a positive attitude and the ability to stand up for you. People will contaminate you. Not because they want too (hopefully) but because they just don’t understand. You MUST make it clear that you cannot have any gluten at all. I’ve been known to say if you poison me I will be calling you to complain when I’m ill the next day.

    Thanks Shauna for a great website. I use it as inspiration every day.

  27. Dana

    After undergoing oral surgery to patch an exposed root, I lived on Kozy Shack chocolate pudding and meal replacement drinks for several days. Instead of feeling lousy from the recent surgery and the poor diet, I felt great–better than I ever had. I didn’t have the migraines I’d had regularly since childhood, my tummy was flat instead of distended, I didn’t have the array of digestive troubles I’d been having for five or six years, and I had a lot more energy. I realized that all of the mysterious health problems I’d been having must have been caused by something I was eating. I’d already had allergy testing, and I knew I didn’t have food allergies, which was a little confusing. But I started adding things back to my diet gradually as my mouth healed, and when I made a dinner of pasta, garlic bread, and cookies, I experienced what I’ve now come to recognize as my own special sequence of gluten reactions: first acid reflux, then severe abdominal bloating, followed by mild cramps and nausea, followed by three days of migraine, insatiable hunger and thirst, and exhaustion. It was a tough transition, but after more than a year without gluten, I don’t miss the stuff at all (okay, once in a while I yearn for a Left Hand Milk Stout), and life is really, really good!

  28. Amy

    After I had my second daughter (emergency C-section) I started feeling like I had the flu– often. 9 years later, I figured out on my own that I couldn’t eat gluten. It’s really frustrating to have lost 9 years of my life. 9 years lying on the couch, watching TV, wondering if I would ever, ever feel better. I don’t know if I have Celiac or not because I hadn’t been eating gluten for several months before I was tested. There’s no way I’ll eat it again in order to get a diagnosis. Thank you for sharing your story.

  29. Leigh

    I figured out I had a gluten intolerance by accident. My 6-year-old had chronic digestive issues, namely chronic constipation and reflux disease, and we were at our wits end trying to “fix” it. She saw GI docs for most of her short years, had been tested twice for celiac through an endoscopy biopsy and blood testing, and tested negative, and even spent 6 months seeing a child psychologist who thought her bowel issues were psychological. On a whim, I put her on a gluten free diet, and within a week, she was a different kid. Afterwards, I decided to go on the GF diet myself in an effort to support her so that she didn’t feel so alone in her new non-gluten world. I had been having lower digestive system issues for about six months prior, as well as unexplained weight gain that wouldn’t budge, hot flashes, muscle cramps, fatigue, acne, diffuse hair loss and sinus congestion. I chalked it up to stress, to a possible thyroid issue that I thought I needed to get checked out but didn’t have time to do so. I also had been battling a worsening case of alopecia areata that I have had since my early 20s (I am 37). Two weeks after I went GF, I felt like a rock star. Everything cleared up. My hairloss patches, which usually took 3–4 months to grow in after loss, grew in immediately, and a year later, I have not lost anymore. I quickly realized I was probably asymptomatic for nearly two decades with exception to the Alopecia, which I had no idea what triggered it. My oldest daughter, who is 12, is also GF now as well. She had chronic stomachaches since she was 3, and lo and behold, the lack of gluten helped her, too. My husband is the only one who seems unaffected by gluten, but he eats a GF dinner every night and is very supportive.

    I am so thankful to have figured out what the doctors didn’t. Guess that just proves that you should always go with your gut instincts. ;)

  30. Rachel

    Hey everybody !
    My name is Rachel. I was diagnosed with Celiac Disease two years ago. I found out my senior year of high school. Growing up, i had an array of unrelated health problems. You name it, I probably had it. It would take 1000 pages to disclose my entire medical history so i won’t waste time. My senior year, i thought i had a really bad stomach flu that lasted a long time. I had terrible stomach pains. For the men, I would describe it as being stabbed a million times in the stomach while being gutted like a fish. For the women, imagine your worst menstrual cramp and times that by 100. I had GI symptoms. I was constantly tired. In a span of two weeks , i went from 145 lbs to 110 lbs. I was tested for Cohn’s disease, IBS, and Celiac. My blood test came back with a 9. In Celiac testing terms, a 12 means you definitely have it. Since i was kind of in the middle, the doctors decided to give me an biopsy. The biopsy came back positive. Since then, I’ve been gluten free. It was hard for me at first because for 17 years of my life: all i ate and loved to eat was gluten. No more pizza, birthday cake, pasta, fresh out of the oven chocolate chip cookies etc. I’m still not 100% better. I still sick time after time. But i do feel abit better. I hope my story helped people who might have celiac. If you have any questions or want more detail, I will gladly help in any way i can.
    Thanks !
    Rachel

    1. Sarah

      Rachel,
      Have you looked into other food intolerances? I went off gluten, soy, eggs, pineapple, asparagus, garlic, and ginger three years ago. My symptoms improved somewhat, but not completely and I still got sick Constantly.

      Now I am seeing a new naturopath and going on an elimination diet to find out if there are food intolerances that did not show up on the blood and saliva tests. I have high hopes for feeling better at last!

  31. Emily

    I am going to try to make what is normally a really long story as short as possible. The headaches started when I was 8. I remember the first one — walking home from the restaurant, the pains in my head and body — just wanting to find a dark place. By the time I was 18 I had little niggly things all the time: headaches, tiredness, tears, mild depression. I would get the “flu” twice a year, where I felt achy, tired, crampy — and then it would clear up. I’d have 3 or 4 colds a year. Report card after repord card said that I was bright but had trouble with follow-through. Despite my love of outdoor activity, I couldn’t put on muscle, had trouble with coordination and no stamina. All mild symptoms — but looking back, they were indeed symptoms of a larger problem.
    Then at 27, in very short order, I lost my father to cancer, had appendicitis and moved across the country…the more serious symptoms started then. I was more than blue — I cried all the time, I couldn’t concentrate, I couldn’t finish a sentence — I would trail off because I couldn’t find the right word. I had acute anxiety. At 34, as I started a Master’s degree, I started getting terrible abdominal pains. I started to feel like I had sharp glass shards in my belly all the time. I couldn’t eat because I always felt full. My belly was always hard and swollen. I had awful bouts with constipation. Pregnancy was not possible.
    Keep in mind that I had no abdominal symptoms until my 30s — but even then the doctors wouldn’t take me seriously. The gastroenterologist even told me that it couldn’t be celiac (despite my having a close relative with the disease) because I was “overweight and celiac patients are always underweight when diagnosed.“
    After 30 days of being gluten free, my skin returned to its natural colour. I felt light — like a heavy cloud had lifted. More intriguingly, the anxiety lifted, too. It was so weird and so wonderful to discover that I am, in fact, an optimistic and cheerful person. That I actually see the glass as half-full — and not, as I had thought, as half-empty.
    Unfortunately, as it turns out, the infertility was irreversable, which happens sometimes for celiacs who are diagnosed late — but we are okay with that.
    But it took 27 years to figure out that I had celiac. I try to be as open as I can with as many people as I can, especially parents of children who might be celiac as I was — maybe I can save someone else 27 years of feeling like a hypochondriac.

  32. Laura

    I am writing this in the hope that someone would recognize the same symptoms and try to go gluten free. I haven’t been “officially” diagnosed by anyone other than myself at this point.

    I have had skin, articular, and intestinal symptoms for 4–5 years. The doctors never put them together, the intense skin itching was first attributed to a fungal infection, then it was diagnosed as psoriasis. The joint pain could not be attributed to anything after some blood work. The intestinal issue (aka loose stools, sorry for the TMI) was kind of embarrassing so I never mentioned it to my doctor. I also suffered from bad bloating but I always thought it was due to my endometriosis. My chiropractor, who had recently gone gluten free, suggested that all my symptoms could be due to a gluten allergy. I was in denial, I am a pastry chef, I bake all the time, I am Italian, I love bread, how could I survive? I went off gluten expecting a huge change, like loosing tons of weight from water retention, but things didn’t really change much, so I was sure I didn’t have a gluten allergy. After two months of being gluten free I ate tons of pastries over New Years Eve when we were on vacation, and I got the bloating and the skin itching back with a vengeance. I was floored. My chiropractor then scared me by describing how the allergic reaction causes fluid to accumulate around your joints and heart, therefore causing long time effects which I didn’t want, I went off gluten again. I also noticed that every time I ate gluten I would wake up the next day with a super stiff back, like my spine would fill with fluid and I couldn’t move, my chiropractor was so right. I also wake up with a puffy face, another sign of water retention/inflammation. I also discovered that I am lactose intolerance, which can develop too after a gluten intolerance. I am still having joint pain in my feet, but not as bad, no more skin rash or back pain, and my acne has also improved. I forgot to mention another not really pleasant symptom.…when I eat gluten I wake up with thick mucus in my nose, and that is another thing that convinced me to not eat gluten again…I get this inflammatory response all over my body, it can’t be good, can it?

    I know a woman whose irregular cycles became regular and whose back pain disappear once she went gluten free.

    This was such a surprise to me as most of my symptoms were not intestinal and that is why gluten intolerance doesn’t get recognized easily. The good thing is that it is easy to try and go gluten free for one or two months and see what happens. I love starch and luckily I can eat wonderfully with out gluten. Dairy products like butter and whipping cream are the things I miss more, as there is not substitute for butter or cheese.

    I hope this helps someone.

    Be well!

    1. Aleisha

      I have had a similar situation, and thanks to a radio show I heard back on January 2011 I felt like all of the symptoms they described applied to me (which I know happens a lot…I don’t visit WebMD anymore for that very reason. Ha), but I had been experiencing terrible pain as well from my endometriosis and decided I didn’t have anything to loose for a about 6 weeks other then food that contained gluten. Then I would see if I could slowly introduce it back and see what my body’s reaction would be. After about 2 weeks, I noticed I had less bloating, which caused me less pain due to my endometriosis. I also had better cognitive abilities (no more brain fog! no more anxiety! no more crab-apple attitude!) and energy. I was so excited that when I arrived for surgery to remove my endometrisis in February, I thought that perhaps it had gone away on it’s own (obviously it hadn’t, but the pain had which is pretty huge on it’s own). I told my doctor this and he said that this was great and that if I didn’t want to eat gluten anymore because I felt so much better then he agreed with that choice (I didn’t feel I needed to have testing done to find out what I already know to be true). After my surgery confirmed that I have endometriosis, I read up on some books about healing through nutrition for endo and they all strictly say that you need to give up wheat, if not gluten in general. Apparently the inflammatory and hormone altering affect it has is a disaster for women w/endo.
      It has TRULY changed my life and I am so sorry that most people either are in the wrong hands of guidance from their medical community or don’t have someone to tell them that they need to try to eliminate this from their diet to be well and stop suffering.

  33. Elizabeth

    I was diagnosed with “Fibromyalgia” at 26. I “managed” it by severely limiting my physical activity and taking naps every day. When I came down with unresponsive acid reflux in my early thirties, I tried unsuccessfully to get relief for 3 years. I could barely eat anything without triggering the painful searing of acid in my throat. I lost 20 pounds. I spent hours researching on the internet, reading books. My gastro doctor told me I was stressed (!) and gave me prilosec and every other acid blocker on the market. Other than telling me to avoid tomatoes, chocolate, and spicy food, she didn’t talk about nutrition at all. Eventually, I found an article online talking about gluten and GERD. When I went off gluten, my “Fibro” pain went away and I could feel my body healing itself. It took longer for my stomach to heal and the reflux to resolve because the damage was so severe. I don’t have Celiac, for which I am grateful, but gluten intolerance is NOT just another allergy. When I eat gluten it effects my mental sharpness (I can’t think of words), it makes me irritable and depressed, and causes muscle tightness and pain.

    1. Carly

      I also had GERD, and now a Hiatus Hernia.… I regularly go to the chiropractor for regular “maintanence” and they treat my hernia. It is amazing, when it gets bad a Chiropractic adjustment fixes it immediately!! Just wanted people out there to know that Chiro is not just for your back or neck. They can treat many digestive issues as well… It’s a lifesaver!!!

  34. Glen

    12 years of horrible stomach problems, so bad in the evening if I wasn’t right against my wife putting pressure on my midsection I simply could not sleep. The Acid Reflux was simply unbearable some days. Had been scoped, given every medication they had, it helped some. Finally one evening at dinner we were discussing a friend who was diagnosed with Celiacs, my wife suggested going gluten free, and seeing what happens, A week later NO PAIN, had lost nearly 15 pounds, felt terrific.
    The main reason why I would urge anyone who suspects they might have Celiacs is, Years of misdiagnoses has eaten my joints and I suffer from terrible pain, some of you know it robs your body of beneficial vitamins and nutrients needed to maintain good joint health, I am 45 sitting here going from heat to cold packsfrom running 10 feet in a straight line, blew out my knee, terrible pain.
    Additionally, eating GF has become so much easier in just the past couple years, there is no reason not to try.

  35. Tara Caimi

    In hindsight it’s easy to see the symptoms were there from the time I was an infant, but I wasn’t diagnosed with celiac disease until the age of 30. My symptoms were “classic” and still I was in the hospital for more than a week before doctors decided to test for what they called “a very rare disease.” This was in 2002. I hope people are having better experiences today. I hope to help raise awareness by sharing the story of my diagnosis as a series on my website this month. It isn’t easy to talk about this particular disease, so I am thankful and admire all who have the courage to share their stories. Even if one or two people can relate to the symptoms and find their way to a healthy lifestyle, it makes it all worthwhile.

  36. Anne P

    Difficulty getting pregnant and maintaining a pregnancy.

    My husband and I tried for 3.5 years before I was able to get pregnant and deliver a healthy baby. I miscarried twice before that. Looking back.…we were living in India at the time and my gluten intake was minimal. Eating lots of curries, rice etc and very little wheat products. We then moved back to the states, however, and I went back to my normal American diet. HIGH in gluten. We continued to try for a second baby and after 2 more miscarriages my naturopath suggested going gluten free. She said that she knew several people who were able to get and stay pregnant who had done that. I was ready to try it! My sister and brother had both just been diagnosed as celiacs. I got tested, but my blood test came back fine. I went gluten free anyway. 6 months later I was pregnant with my 2nd, 5 months after he was born I got pregnant with my daughter and when she turned 1 I got pregnant with my 4th. I truly believe it was because I went gluten free.

    Our entire family eats gluten free — to keep things easy, I haven’t had my children tested, but my oldest son does react to gluten — he gets moody, cries and acts out. Eating gluten really affects him.

  37. Becky

    I was diagnosed with gluten intolerance 11 months ago when anti-gliadin antibodies showed up in my blood work. (Not “technically” celiac since I don’t have the intestinal damage.) I had been getting migraines since I was about seven years old. At the time of diagnosis, I was getting them on average about twice a week. Luckily I could kill them 90% of the time with three ibuprofen. However, since going gluten-free, I have not had a single migraine. This is the starkest difference. My only headaches have been associated with the over-consumption of wine. :-)

    I also have hypothyroidism for which I had continually needed to increase my dose of meds. (Interestingly, I first became ill with hypothyroidism while living in Italy, a time during which I ate pasta twice a day!) While the hypothyroidism has not gone away, I haven’t needed to increase my meds either. I was extremely ill before taking thyroid replacement, and am fortunate that the medication has reversed my symptoms for this 100%.

    I also suffered from “IBS,” which everyone thought was a result of an eating disorder I had in high school. This, like the migraines, has also gone completely.

    There are a number of other things that could be associated with my intolerance, although I don’t know for certain in my case. For instance, I had extremely “achy knees” for several years as a child, which no one could explain; didn’t begin my period until I was 15 and have suffered from an irregular cylce since; also have Reynaud’s syndrome in my hands and feet.

  38. Courtney (Gluten Free Jesus Freak)

    Thank you for this post, Shauna.

    I’ve been gf since September of 2009. I had felt very, very ill since January of 2005. I was up late into the night with searing stomach pains (explained by doctors as “minor IBS”). I had extreme constipation for weeks followed by diarrhea for days and days (explained by doctors as “not eating enough whole wheat”). My stomach cramped so badly and so often that I could only curl up on the sofa and whimper (explained by doctors as “possibly an ovarian cyst”). My head was foggy all of the time. I was grouchy. I got migraines regularly.

    Then, I decided to give up gluten because, what the heck, it couldn’t make things any worse.

    And within a week, all of my symptoms were gone.

    I can’t go back on the gluten, but I’m one of the many self-diagnosed out there. It’s harder to be a self-diagnosed celiac/gluten intolerant person in ways because people think you’re being fussy or needy or wanting attention.

    But I will never go back. I feel amazing now. I actually enjoy food without awaiting the punishment to come.

    I’m also finding I can help care for people in churches by teaching ministers how to offer gluten free communion to their parishioners. It’s an often overlooked thing, but it means the world to folks to be able to partake of the body of Christ with the rest of the church.

    I’m grateful every day that my illness is so easily treatable. No drugs. No shots. No expensive medical treatments. Just good, wholesome food and no gluten. I can do that.

    Thanks again. You’re wonderful.

    1. Simone

      Hi Courtney,

      Fellow Jesus Freak Here. Church has been a difficult place to introduce any kind of alternate eating plan. I think some church people who I know are less apt to change their eating habits because they are so focused on eternity that they can’t always see the benefit of eating well now. Can you imagine the healing that would take place … hypertension, high blood pressure, migraines, diabetes. It would be phenomenal. We have a luncheon fellowship every Sunday and I’ve just stopped eating there. I usually bring the bread and recently I haven’t. I think last week I brought apple juice.
      Thanks for sharing your story.

  39. Jefflin Breuer

    I had been sick for years my stomach would get huge and bloated. I would get flushed in the face and it would feel like I had a fever. The worst part was that I would get every illness that was going around, everything. My body ached and my head hurt all the time! I felt lethargic no energy. I would have 20–25 bowel movements a day or the other extreme would be no bowel movements for weeks. I would RAGE all day I had no control over my anger! I had extreme indigestion I was on prilosec for 12yrs I would vomit stomach acid at night when I was sleeping. My doctors told me I had cancer they told me I had chrohns they said I was very sick but couldn’t tell me what was really wrong with me. I have 35,000. dollars in medical bills from all the tests and not one doctor ever said the word celiac. I had even mentioned it once and I was told that it was too rare of a disorder and there was no way I had that. Three years ago a client of mine ( I do hair) noticed how sick I looked and asked what was wrong. I told her all of the things I had been going through and she said I have celiac and I think you do too. So the that week I went to the a new doctor and had them do a blood test and it came back positive!!!! All those years of thinking I was dying!! I quit eating gluten that day and it took less then a month to feel better and I have never looked back!! I haven’t been sick with cold, flu’s or the pneumonia I had every year for 9 years. I feel so good now and I am so grateful for my health and my life!!!

  40. Johanna

    Horrible headaches when I was a child (9–10); the whole family did an elimination diet and eliminating wheat did wonders for me. HOWEVER… when puberty hit, I “grew out of it”. Fast forward 20 years, through working in cafes, working as a baker, being the sort of hobby baker who made my local sourdough before it was cool… I was absolutely exhausted by mid-day. The headaches had returned. I had horrible stomach cramps, room-clearing gas (sorry!), other GI upsets, and eating crackers and ginger ale just brought on what I thought was heartburn. Turns out I had the 1–2-3 punch of psoriatic arthritis, Sjogren’s, and celiac. If I slip or get poisoned, sometimes nothing happens, or I could be occupying the facilities for the next three days. I get unreasonably angry sometimes at people who are gluten-free because they think it’s healthy — after all, I largely have them to thank for being able to find food nearly everywhere instead of suffering through whatever was in the freezer case at GNC. (I still remember the rice flour pancakes my dad made; trying not to show how disappointed I was, at 10, as my pancakes slowly dissolved into the syrup yet still managed to be incredibly gritty once I got them in my mouth.) My family has a constellation of autoimmune disorders and my grandma likely had celiac. My siblings and parents are clear. I’ve learned to live with this, even enjoy the creativity required, but I wouldn’t wish it on anyone.

  41. Sophia

    I didn’t think I had it (no noticeable symptoms) but I got tested 4 yrs ago when my sister was diagnosed with Celiac, since it is hereditary. To my surprise I DID have it, and after going gluten-free I realized in hindsight my symptoms: intermittant, mild stomach aches after eating which I’d previously ignored, and energy crashes around 3pm every day which I thought was normal. Now I get a severe stomach ache from even a tiny bit of accidental gluten, and I’m glad I found out about the Celiac without having to suffer (consciously, at least) as much as others have. I am now so much more aware of the food-mind-body-well-being connections and how important they are (and I’m a biomedical scientist). I don’t think of Celiac as a disease, but as a natural state.

    1. Leslie

      This sounds very much like my symptoms before I went gluten-free — digestive upset and cramping after meals and a mid-afternoon crash. I also had weight gain that I couldn’t get rid of despite doing all the right things, intermittent anemia, and I still have Hashimoto’s thyroiditis. I am one of those people who was never tested beyond the standard blood test, which came back negative. My GI doc wanted to do a biopsy, but I’d already been off gluten for over a year and the thought of going back on a gluten diet to do the testing was too awful to consider.

      I found out about my gluten intolerance by accident — my mother had gone to the doctor with some classic Celiac symptoms, and because she is otherwise so ill he declined to test her and just told her to go home and try a gluten-free diet. It worked wonders for her, with all her digestive upset and some other symptoms disappearing immediately, that when she went back for her follow-up the doc asked her if she had any children and mentioned that Celiac is hereditary.

      I went gluten-free to test this out and within a week I’d lost almost ten pounds with no effort and my digestive tract didn’t hurt or cramp after I ate. I had a ton more energy and generally looked and felt so much better that I never looked back.

      And: Shauna, thanks for all you do.

  42. Stacey

    Shauna, thank you so much for all you do!
    I went gluten free a year ago. Symptoms included (but not limited to): Headaches, fatigue, constant nausea, arthritis, rosacea, secondary infertility, brain fog, apathy. My 7 year old was diagnosed by her doctor as “gluten sensitive” in November. As I was reading your blog at that point, I documented her symptoms with photos, including an alarming “before” photo and a much healthier looking “after” photo. She was rapidly falling behind in school, chronically ill, had anxiety attacks (her pedi wanted to put her on XANAX), dark circles, stunted growth, chronic GI problems, rashes…
    I’ve since gone grain free and it was the final hurdle with my energy level and some arthritis pain. I’d love to see more recipes with meat and veggies…but I also understand that people need their baked goods. Oh, and did I say “thank you?”

  43. Rachel

    Ugh. I started feeling sick–intense abdominal cramps, bubbling gut, foul, insistent gas, diarrhea with fatty stools AND constipation, fatigue, and sudden URGENT need to poo within 20 minutes of every damn meal–when I turned 19. I went to the student health clinic and the doc there gave me a cursory rectal exam and said “Oh I know exactly what you got, cuz I got the same thing: you got IBS. The good news is its nothing serious, but the bad news is there’s nothing we can do about it, except give you this pill that will help with your symptoms.” Then she brushed off her hands and sent me along. Two years later, I had my gall bladder taken out, on account of a giant gall stone. My poo became more liquified after that. Fast forward to 18 months ago, and I am 31 years old, and feeling so damn tired and weak all the time. My sister recommends that I see a naturopath, since from him and no other doctor she was able to learn what food sensitivities were afflicting her children, and she thought that he might have some insights for me. And sure enough, I did a saliva food sensitivities test, and the results were highly reactive to gluten. I was also severely vitamin D deficient. “Huh.” I said to myself. So I went off gluten the next week (wanted to get my last bites of my favorite foods first of course). And–this is a shocker, I’m sure–all my symptoms, the cramping, the spastic colon, the gas, the bubbling, ALL OF THEM, WERE GONE IN THREE DAYS. My skin even cleared up a little. I started on a vitamin D regimen, and I started to feel like exercising. It was an OMG moment for me.

    10 crappy years of suffering because there’s “nothing to be done about IBS,” when it was a dang gluten intolerance. Effing doctors.

    Another interesting note: my grandmother and her mother both died from Osteoporosis and vitamin D deficiencies, and always complained of their “spastic colons.” Hopefully, I dodged THAT bullet.

    1. CTJen

      I am Rachel’s sister and, unsurprisingly, I have my own tale of going gluten free. My older son has suffered from pretty severe eczema for most of his life, and after years of being told my doctors not to worry about his diet, I decided to have him tested for food allergies (against the allergist’s wishes!) and food sensitivities. I had the allergist do a skin test and went later to the naturopath for the saliva test. He tested positive for peanut, soy, and wheat allergies (and many sensitivities) and is now also off of dairy. The naturopath did such a great job with him that I decided to go ahead and get tested for food sensitivities as well.

      You see, about 5 or 6 years prior to this I had been diagnosed with IBS by a gastroenterologist and was given much the same brush off as my sister. For years my symptoms worsened. I suffered with bloating and foul gas, diarrhea and emergency poo (as my sis and I call it) constipation, depression and fatigue, roseacea (I still have the roseacea, I’m just not as pink in the face as I used to be), cystic acne, among other symptoms. Sure enough, the saliva test showed that I am intolerant of gluten. It took me longer to get a hold of my symptoms than Rachel because I am also lactose intolerant. But once I had rid my diet of both, I started to feel better. I haven’t been tested for Celiac, and I don’t really intend to be, although since my gut seems so fragile and it only takes a microscopic amount of gluten to affect me, I highly suspect I do have Celiac. It’s not worth it to me to be tested, however. Just knowing that I feel better without wheat (and dairy!) is enough.

  44. Liz

    My daughter had shocking eczema and dermatitis. Long story short a naturopath suggested she stop eating wheat products so she took this a step further and stopped eating anything with gluten. Her skin problems cleared up. Not 100% but significantly. She was asked if anyone else in her family had similar issues. I researched gluten intolerance and voila!! maybe my bloatedness and stomach pain after eating breads etc plus the odd hot and really itchy, welt like rashes that appeared on my neck and across my abdomen from time to time were caused by gluten. So I stopped eating it. All such symptoms ceased. Now if I do eat gluten inclusive food stuffs — sometimes because I’m in a situation where there is no alternative — the indigestion, reflux, stomach discomfort and itchiness reappear.
    I’m not a caeliac, have had that checked. Have not had gluten sensitivity tests done. Don’t need to, it’s screamingly obvious.

  45. Maggie

    I was in a severe car accident in 2007 and suffered a head injury. My docs said fatigue would be a symptom for a long time as I healed, but when I approached the date when I was told most of my major healing should be done, I still felt like garbage and had no energy. I was trying to finish my college degree and found it hard to focus, to concentrate. Knowing my mom has avoided wheat (never diagnosed) for most of MY life at least, and talking to my best friend who’s boyfriend has celiac, I started connecting the dots. I immediately began to look at my diet and almost right away I made the connection. When I ate gluten, withing 10/15 minutes a headache would start, I’d feel cotton candy creeping into my brain… this heavy stickiness that would make thinking an arduous task and make it difficult to even hold a conversation. BINGO. GLUTEN. I cut gluten out of my diet and with in a week or so I finally felt like a PERSON again. Was fatigue a symptom on my injuries and healing? Yes. But now I can tell the difference between a normal kind of tired and a gluten brain fog. They feel VERY different. I’ve been gluten free since the winter of 2009 and never looked back. The times I did eat gluten accidentally — at a restaurant or something — that sticky brain fog would creep back in, make it seriously difficult to function and destroy me for hours. I did get the intestinal symptoms if I ate a lot of gluten over a prolonged period, or an especially glutinous pizza crust or something… but mostly, for me, it’s neurological.
    And I did read on the Mayo clinic’s website that doctors have found, while still genetic, celiac or gluten intolerance is often triggered by major sources of stress — accidents, surgery, pregnancy, etc.

  46. Katy

    I was sick my whole life. Nearly-constant ear infections, sinus infections, bronchitis, allergic to everything, unexplained malnutrition (I was eating the “right” things, but the nutrients weren’t being absorbed), fatigue, aches and pains, heart palpitations, depression, bloating, general digestive weirdness. Pretty much all these symptoms got worse when I went to college, and finally a week before my senior year, I was diagnosed with Celiac and an autoimmune liver disease called PSC, which apparently can be triggered by Celiac. It’s hard to say exactly which symptoms were Celiac and which were PSC, but after 14 years gluten-free and a liver transplant 6 years ago, my life is unrecognizable — I feel fantastic!

  47. Hannah Van Winkle

    I was diagnosed with celiac about 2 1/2 years ago with a biopsy of my small intestine. Before this I suffered daily with unbearable stomach pain, nausea, bloating, diarrhea, extreme fatigue, and foggy brain. Although it took six months until I felt 100% again, I did start to feel better within a week of cutting gluten out of my diet. Now I look at photos of myself before I was diagnosed and I can see how sick I was back then, I just didn’t realize it at the time.

  48. Teresa Ridgeway

    After the birth of my second child, I was well on my way to losing the baby weight. I was going to the gym 4–5 days a week and feeling pretty good. Suddenly, the weight loss stopped. I have hypothyroid and had been diagnosed for 4 years. I’ve heard that if you have one autoimmune disease be on the look out for others. I was still lethargic and over time noticed stools becoming looser and started to get indigestion and horrible gas but I couldn’t link it to any foods that I had eaten like beans or broccoli. I thought my loose stools were because I was eating better (think whole wheat) in an effort to lose the baby weight. Over the course of 3 years, I tried ( and still am trying) to lose that baby weight. I’ve taken up running and still continue to work out. I don’t think I could lose a pound if my life depended on it. I am currently training for a marathon and I am still the same weight. On the recommendation of a friend whose mother was diagnosed with Celiac, she thought I should be tested due to the inability to lose weight being similar to her mother. I had a doctor’s appointment the next week and asked to have the blood test done. The doctor looked at me like I had grown horns and put the order in. A week later, he calls me and says that the test came back positive and said “that NO ONE is more shocked than I am that this came back positive.” He had nothing else to tell me except that he would put in for me to see a GI doctor. Um, thanks a lot! I had the endoscopy done and it came back positive. This was March 2009. I have been trying to be a good Celiac and not cheat. I know that gluten in my system can ultimately lead to colon cancer. I have been much better because I know that I feel tons better without the gluten. I was surprised to get the diagnosis and thank my friend for mentioning it. If you have any crazy symptoms, I recommend you get the blood test done. It isn’t 100% accurate, but it will give you a start.

  49. Val

    i was SUCH a skinny kid. every six months i would go see the specialist to try and figure out why i wasn’t gaining weight,–bloodwork, drinking barium, you name it. 37 lbs in first grade. in high school i was severely anemic and often accused of being anorexic. i was the only one on the cross country team who didn’t get in any better shape through the course of a season even though i trained with everyone else– and i’d get home from practice, eat and fall asleep til the next day. all through college, my twenties and thirties i was prone to severe horrible random hives. three years ago i got very sick (a flu they said), my stomach never stopped hurting. my doc claimed that ‘sometimes a flu will linger’ and suggested tagamet. i’d had daily diarrhea for so long i thought it was normal. my thumbs and hips started aching, my left eyebrow fell out, my hair started thinning, foggy, cranky, fibroids… it was finally a naturopath who tested me and, with the positive, said ‘this could explain your entire medical history.’ i think it does.
    my mom had osteoporosis at 40 (and then complications from years of fosomax). she tested positive too.
    when i keep my diet clean, i feel great and maintain a healthy weight. i struggle still with the level of my sensitivity and cross-contamination– a few trips to restaurants this winter led to several awful weeks, i lost some weight and my wedding ring fell off at work and is gone. — i went through several days of feeling sorry for myself and being so very angry about celiac. it can be a struggle but i am grateful to know what’s going on. and grateful for this community.

  50. No Gluten Natural Girl Products

    I have had issues forever. In my 20’s they said I had colitis, and then in my 30’sit was irritable bowel. When I was 40 they thought it was stress and spastic colon. Then in late January-February 2010, I started loosing a lot of weight 25–30 lbs in 3 weeks. I was grey and just sick all the time, my doctor told me it was just a bad sinus infection. Large dose of antibiotics and still nothing, while he was on vacation, a colleague I work with sent me to his doctor and they took me off of the antibiotics and ran a lot of tests.
    I ended up in the emergency room and they recommended a Gastrologist. Since colon cancer runs in my family it was the first thought we had. My grandfather passed in his mid 40’s from the disease along with other family members. I was scheduled for a colonoscopy and he also did an endoscopy. A day later he wanted blood test done and the blood test confirmed the scope, I had celiac Disease.
    I remember when the phone rang on that Sunday morning and I saw his name on the caller ID I thought I was a dead women. He apologized for calling me on a Sunday but knew he had a busy schedule and wanted to talk to me as soon as he could. Then he said as of tomorrow no more gluten, nothing ever again. I knew a little bit about celiac disease and he explained the details of it. After several months I still wasn’t feeling well and I read about how people started feeling great after taking gluten out of their diet. So I scheduled an appointment and he told me he put patients in categories, mild damage from gluten, moderate and extreme. I fell into moderate and extreme (more extreme than moderate) and he told me it could take years for me to feel better and so far it has. He also sent me back to my doctors about other issues I was having.
    I went back to my new doctors, never went back to my other and they recommended a Rheumatologist, to see if they could shed some light on the fact that I still wasn’t feeling well and still had odd symptoms. Turns out I have to 2 other autoimmune diseases (YEAH ME) I was diagnosed with Sjogren’s syndrome, again symptoms I have had most my life and Fibromyalgia.
    So it was a year that also included several other tests, because they were looking might as well check for this and that. I had a mammogram and guess what; yes while I was being prodded and scoped they found two lumps one in each breast. Had double biopsies and went home to find I also have as if I wasn’t done enough issues with my liver and need to have scans done every six months. The biopsies were fine and I recently was release from every 6 months to once a year mammograms ?
    Put a fork in me I was done. As I cried one day my oldest son said “Mom at least it’s not the C word we thought it was” and he is right “Thank God”. I have had other issues in my life after my oldest son was born I lost 3 children in three years prematurely. My youngest child came with many complications but he came. So I am grateful for so many things that have happen in my life, good and bad. It could have been a lot worse.

  51. Jean Layton

    The quartet of gluten reactions in our family show the spectrum of reactivity.
    Ed had osteoporosis (at 45) so badly that he broke his femur ice skating with our daughters from a simple fall on the ice.
    Oh, and bad gas after eating, soft teeth with lots of cavities, and general brain fog.
    I had all the digestive complaints, stomach ache, gas bloating. Infertility too, it took us 2+ years to get pregnant., cause I kept having these late and vast periods. Now I know they were most likely miscarriages.
    Our twins stopped growing once wheat was increased in their diet as they entered kindergarten. Just stopped, no growth for 4 months.
    We had kept a wheat-free house for years simply because I knew I felt better without wheat in my life.
    So the girls hadn’t had a lot of sandwiches on soft squishy bread before kindergarten. But finding spelt bread around our small town was difficult and meant a special trip to one store. So we introduced wheat bread in the lunch box.
    Thank goodness, I was measuring them monthly!
    Oh and once we stopped for a while it became even clearer why we need gluten out of our lives.
    I get horrible gas, bloating, diarrhea and brain fog with any exposure
    Ed gets migraines as well as the GI complaints.
    Fiona bounces of the walls, looking for all the world like a child with ADHD. Her skin itches and her body has to purge itself. Now she is beginning to manifest the migraines too.
    Katie gets the GI complaints and tremendous lethargy.
    So we cook for ourselves, try to help other folks learn about thriving gluten free and just say YES to the best diet for us.

  52. Eli

    I used to cry every day, from the age of 10 onward. I was diagnosed with chronic depression but no medications or therapy made any difference. I also had horrible pain in my knees– so bad I couldn’t use stairs without crying. I was diagnosed with arthritis and told to plan for a knee transplant. My stomach burned terribly and often I couldn’t keep food down. I was put on ulcer meds but dietary changes never came up.
    I was twenty-five when an acquaintance was diagnosed with Celiac. I did some research and decided that my problems might be caused by gluten intolerance. My doctors at the University actually discouraged this course of action, telling me there was no link between diet and depression. I ignored them because nutrition is so often overlooked, and I would rather modify my diet than commit to lifelong medications, especially since none had worked for me and had only caused terrible side effects.

    Six years later, I have almost no arthritis pain, which feels so miraculous. My depression is manageable, thanks to dietary and social changes. My stomach never burns.
    Going gluten free has saved my life. I am now 31 and feel better than I can ever remember. I’m not sure how long I could have gone on like that– especially since I have often been without health insurance.

  53. Anna

    I was diagnosed with Celiac Disease when I was 22. I had migraines 2–3 times a week until I was 22 — I took medication to manage the symptoms, but it was awful! I’m very short (4’11″), and my parents are normal height (5’4″ and 6’0″). I was always underweight, and hated eating — I almost never had an appetite. By the time I was diagnosed, I was vomiting at least once a day, had horrible intestinal pains, very depressed, and my hair was falling out. I’m so thankful for the gastroenterologist that diagnosed CD.

  54. Jennifer Carnegie

    My infant daughter became extremely ill at 6 weeks old after having been a healthy 7.9lb baby. She lost weight, had repeat ear infections, severe GI issues and respiratory infections. We where told she had CF, cancer, pediatric lupus, and numerous other illnesses. At 2.5 years we where told to prepare that she would not survive as the medical profession could not figure her out. In one of our numerous hospital stays a doctor walked in took one look and asked if she had Celiac Disease (of course she had Celiac and was very aware of the signs). Within two months my delayed lethargic baby was a running toddler. The doc later said my daughter started responding to my breast milk. Of course my husband later found out he was celiac.

  55. Erin McKercher

    Love, love, LOVE the tone of your posts. You always hit it right on!

    I was diagnosed with hypothyroidism and Addison’s disease during the year after the birth of my last (3rd) child. Part of routine screening for Addison’s disease is to test for Celiac’s since they are associated. My blood panel showed positive and my biopsy (endoscopy) showed normal. My GI diagnosed me with “subclinical” or “latent” Celiac’s. This means it’s likely that gluten was slowly damaging my insides (low iron, low vitamin D), or would have damaged them eventually. He recommended switching to a gf (completely gf) diet to reduce my risks of cancers. By switching to gf my cancer risks are the same as the average non-smoking female. By not switching to a gf diet, with my positive blood tests, my GI explained thaty cancer risks would be about six times the average. To me this was a simple decision.

    Just like you, when I see food with gluten it repulses me because all I see is poison. Since switching a year ago, my cholesterol went from good to great and I eat a lot more fruits and veggies. Keep up your awesome work and motivating posts!

  56. francesca

    I was diagnosed with Celiac in 2008. I didn’t have any “normal” symptoms. None of the usual intestinal distress. I didn’t notice anything after eating specific foods. But, for about two or three months, I just felt gross. My stomach felt icky. Everything I ate made me feel stuffed. I described every meal as Thanksgiving dinner and that feeling of fullness. Everything I ate made me feel that way. I didn’t throw up. But I just felt gross. So, finally, after eating some cantaloupe one day during lunch I was fed up with feeling ready to throw up. I called my doctor. She was busy. So I saw her associate the next morning.

    I went in and we chatted about what I felt. She asked me about my history. I was asked if I ever had stomach aches as a kid and I remembered the incredibly painful stomach aches I used to get that would lead me doubled over. I was asked about my family. My dad had complained of stomach problems since I can remember. My aunt had a host of gastrointestinal issues. My grandmother died of stomach cancer when I was a kid. I was asked if there were some triggering foods. I told her none. She gave me some acid reflux medication to try. But also ordered blood work. I will always credit Dr. Appel for having the “creativity” to throw celiac in the blood work she ordered. My numbers came back through the roof. She encouraged me to have the endoscopy just to be completely sure and also make sure there was nothing else going on. I did. As the gastroenterologist who performed the procedure said, I was “pervasively damaged.”

    It’s been a very intense change as it is for everyone. Like most have written, I was brought up on bread and pasta and well, flour. I was raised in an Italian family! But I was so happy to have an easy answer to problems I had never really consciously been aware of. The dull joint pain in my fingers? Likely gluten. The increasing forgetfulness? Gluten again. Mood swings? Oh yes, gluten. And the family history of cancers and stomach problems? Going gluten free was a relatively “easy” answer.

    Oh, it’s been a pain. It’s been tough. I miss how easy getting a quick sandwich used to be. I miss my dad’s homemade bread. I miss sflogliatelle. But, it is my answer. And it’s a lot easier not focusing on what I miss and just focus on how much better I feel.

    Thanks to Shauna for all her writing. Her blog was a huge source of inspiration for me.

  57. Maura van der Linden

    For many years I honestly thought I just had a “sensitive stomach” but, looking back, there are actually a lot of symptoms. I would have days where I felt okay but then days where I couldn’t get more than 5 minutes from a bathroom. I wouldn’t eat before leaving to drive to work for fear that something would set me off and I’d be stuck in traffic so I somehow decided my body just didn’t like to eat before I had been awake for several hours.

    I was lethargic and swollen on top of being overweight. I had no energy to exercise and no amount of dieting would budge the weight. My joints ached and I would get a LOT of migraines.

    Things came to a crisis when I was bitten by a cat, very badly, and my hand turned into a raging infected mess. Like a lot of celiacs, a health crisis shoved me into full-blown symptomology. I had a horrible time while trying to get the infection cleared (a month of very strong antibiotics) and I put the digestive issues down to that but even when I went off the antibiotics, I didn’t get any better. Finally, a friend with a lot of food allergies and a gluten sensitivity told me to get tested because these symptoms were familiar to her.

    I did. I have Celiac Disease. I found out later that the fact I have rosacea is also a clue — once you have one auto-immune disease, you are more likely to have or develop others.

    I went off gluten as soon as the tests were done — before I got an official diagnosis. Like you, Shauna, I was reborn. I felt like a whole NEW person. I suddenly have energy, I feel NORMAL. I keep thanking my friend for pushing me.

    I was only diagnosed about a year ago but I’m not even tempted to cheat. I miss certain foods but that’s okay. I’ve been accidentally glutened once or twice since and I get extremely dizzy, my rosacea goes bright red and I sweat a ton, then I get nauseous and will either throw up or will be not leaving the immediate vicinity of a bathroom for a few days. I also get very crabby and my temper gets a hair trigger. Oh — and I get confused and ditzy.

    I never thought I could have celiac because the symptoms I noticed weren’t ones I tied to it. But I’ve heard celiac called “the great pretender” for the ways it can present being so different in each person.

  58. Geesche Snider

    My daughter was 2yo when she was diagnosed. She will now turn 7 in October. She had the classic symptoms starting somewhere between 12 and 18 months; distended belly, skinny arms and legs, low energy and putrid, light, oily, lose stools with almost every diaper. We started questioning her pediatrician about the symptoms at her 15 and 18 month well visits and eventually she ran blood work and a celiac panel at 2 yo when my daughter lost weight and was officially labeled with ‘failure to thrive’. Our luck was that our Pediatrician had recently gone to some continuing education and Celiac was a covered topic. We are very lucky to have been diagnosed so quickly.

    At diagnosis my daughter was 26.5 pounds and had gradually dropped from the 90th to the 10th percentile. 4.5 years later, she is 70 pounds and the tallest Kindergartner at 4ft5in at her school except for one other boy. Granted she has a genetic advantage having a 6ft8in father, but it just goes to show that following the diet can have such a huge impact on a child.

    Today we are doing great. For the most part she is ok with bringing her own gluten free versions of whatever is being served at school or at parties, etc. 9 times out of ten, what we bring is just as good, if not better anyway. ;) We keep a 95% gluten free home with a very small corner being designated to gluten food prep ie. sandwiches, but that is mainly for my sanity. We try to keep focused on what we can have and I keep a freezer stocked full of cupcakes, cookies, muffins, biscuits, brownies, rolls, chicken nuggets, etc. If we have an impromtu food situation, I usually have something to offer.

    All in all, life is good. I have a healthy daughter and I can’t ask for more.

  59. Leah

    I had chronic diarrhea for over two years and saw countless GI specialists and physicians, had umpteen tests run on me. Eventually, I saw a Naturopath/Acupuncturist that did some kind of electromagnetic testing on me and came up with a laundry list of foods I was having reactions to, wheat being one of them. (Sadly, bacon and chocolate were also. And all soy products.) I made changes to my diet immediately and have been (mostly) symptom free since. Eating out proves to be a challenge so we don’t go out often any more but it’s worth. I have more energy and a much happier life all around.

  60. Ann

    All the GI issues. The perpetual splotchy rash on my chest and inner arms. Overweight but malnourished — my fingernails were very weak and constantly showing horrible stress marks, and my skin cracked around my nose. My allergies were SO MUCH WORSE at the time — I think the overall load on my immune system really took its toll. I couldn’t absorb my vitamins worth a darn and they hurt my gut to take. Lethargy. Did I mention GI issues?

    Now? If I get glutened, I’m incredibly wiped out with an upset gut and I often get the brain fog. I thought that last one sounded terribly unscientific and silly until it started happening to me.

    I knew my gut wasn’t happy about 5 years prior to being diagnosed. I ignored the recommendation to quit gluten for a solid year. I was an idiot.

  61. Bewildered Bug

    I believe I’m gluten intolerant as well.…I say believe because I’m not medically diagnosed. I went gluten free last year and felt so much better, immediately lost 20 lbs in 2 months, my migraines disappeared, my stomach stopped being gassy and stopped cramping, my bowel movements improved drastically, my acne pretty much disappeared, my hair stopped dropping. Then I was convinced to do the testing — and have added it back in.…I’m at my wits end eating this gluten again — constantly telling myself that it’s important and slowly losing the battle. My first test went negative — even though I told the doctor it would.….so I’m doing it again at the end of May. It’s good to hear that so many other people have gone through similar trials.….God knows I need to feel less abnormal. I used to think it’d be lovely to no longer be the only sister (there are three of us) who is always gassy, swollen and sick.……now I just want to be healthy and feel normal.

  62. Victoria

    When I was 24, I was diagnosed with carpal tunnel and mild arthritis. No surprise… they ran in my family and I was on the computer all day for work (no hand rest for technical writers allowed!). A couple years later, I was put on meds for acid reflux by a doc who didn’t bother to test me for any cause first. That was about the point in time where my digestive system got totally messed up. Then I went to another doc who would test for what was causing the acid reflu, and they couldn’t find a reason for it.

    Went off the Prilosec and dealt with the occassional heartburn. Hands continued to get worse (but that was expected). Then last summer… a horribly painful, bumpy rash on my hands. By coincidence, I started on week 1 of the South Beach diet while I was dealing with that, and poof, as soon as the wheat was gone I was worlds better. I ate one last glow-out meal of cheese ravioli and half a loaf of French bread and at the doctor’s office the next day, he told me that it was either probably a wheat allergy or celiac. He could put me thru a battery of tests to find out, or I could just go off the wheat altogether. Since then, I have no knowingly ingested wheat (now… have I unknowingly done it? Heck ya! I can count the number of weeks on one hand where I have not been “glutened”, and usually by myself — forgot I used pasta water to thicken something I had in the freezer, was totally not thinking the gyros meat uses breadcrumbs as a binder, trusted that a “no gluten ingredients” label really meant gluten-free, etc.).

    And when some wheat does accidentially make it into my system… it starts with sneezing and stuffiness about an hour later. The next day, I’ll have heartburn and a rash will start. If it is bad enough, the digestive issues also kick in.

    It’s no magical thing for me… no brain fogginess when I have wheat or “general sense of well-being” that people who DON’T need to do it say it gives them.… when I do not eat wheat, I am not in pain. Cheese ravioli and French bread may be my favorite meal… but as much as I love food, I love being not in pain more.

  63. Heather

    I thought (and my doctor treated me for) I had asthma. Now that I am gluten and dairy free I do not have to use an inhaler. My singing voice/speaking voice has been stronger since going g-f/dairy-free. I’d missed singing like this (even if just in my car)! I’d had what we’d termed “acid reflux” for years/“sensitive tummy” which coincided with me eating pizza at restaurants, some cinnamon rolls, and cheesy casseroles…hmmm…spending Christmas time at my parents’ house meant I’d likely spend lots of time in the bathroom.…My “sensitive tummy” seems to have been responding specifically to gluten (and dairy). Not constipation, mind you…but lots of “cleansing” going on over holiday visits. I’m so relieved to be feeling better now!

  64. Laura

    I have gluten-sensitivity, not full-blown Celiac. My story sounds a lot like many of those above — diagnosed with Fibromyalgia & Chronic Fatigue Syndrome in my late 20’s, infertility, hormone issues, fibroids, underactive thyroid, gall bladder infection, autoimmune issues, eczema, impossible to lose weight, depressed, angry, emotional roller coaster, brain fog… sadly, I thought all of this was “normal”, it was just who I was, how I’m supposed to be, I aged badly. I’m 34 now, and when I avoid gluten, life is peachy. When I eat gluten, the world feels like it is going to end. I can tolerate small amounts of gluten — as long as it is paired with a strong protein (for instance, I can eat a breakfast taco on a flour tortilla if the filling is eggs and cheese).

    Financially, I struggle to eat gluten free, because I crave carbs (not healthy, I know) and the GF breads & pastas are 3–4 times more costly than their standar counterparts. On our limited budget, our lunches were usually sandwiches; prior to GF living, we had a pasta dish 2–3 times a week (pasta streches recipes for our family). I’ve tried increasing the grocery budget, but there isn’t really room to increase it enough — my daughter and I both need to eat GF, and my son needs to as well, though he refuses to (due to sensory disorder issues — he cannot tolerate most textures, and GF foods have lots of textures).

    I’ve cut sandwiches out of our diet for the most part; instead, DD and I eat the fillings without bread. We have pasta once a week, but I use GF pasta (Ancient Harvest is AWESOME!) now, and I’ve transformed many of our previous pasta dishes into rice dishes instead — the rice still stretches the food, but it’s GF so we don’t feel bad when we eat it. My daughter & I love to eat GF oats for breakfast, and I make sure we have GF cereal in the pantry for quick breakfasts… She can tell when she has eaten too much gluten (even though she’s on 6) because her stomach hurts. (She had stomach pain for 2+ years, and it wasn’t until I realized through a detox diet that I was gluten sensitive that I realized what her pain was — once she went GF, the pain went away.)

    I enjoy baking, and I’m learning to bake GF… I can’t stand bean flours, but I love rice flours and potato starches. I keep Pamela’s in my pantry, and for the most part, I can substitute my preferred GF flour mixes cup for cup into my favorite baked goods (pumpkin muffins, peach cobbler, pancakes) and get almost perfect results — I can’t get the creamy, melt-in-your-mouth texture of wheat, but it comes very close. :-)

    Due to eating gluten for so many years, it’s likely that many of my health issues won’t ever resolve. My thyroid is destroyed — it doesn’t function at all, and through medical tests, they’ve discovered it won’t ever work again. I will likely develop osteoporosis in the next 10 years, and according to MRI’s, my bone age is advanced by about 20 years. My gall bladder failed when I was 19, which is a symptom of gluten intolerance… as a result of having that removed, I will battle fatty liver disease for the rest of my life. (It’s not out of hand right now — but I do have to monitor it to make sure it doesn’t become a problem.)

  65. Stephanie Eaton

    I had been diagnosed with IBS since 25… I am now 41. This disease has caused me to have unexplained infertility, migraines, weight gain and hair loss. On my 40th birthday I went to Las Vegas with my family and friends.… I was unable to enjoy myself due to being horribly sick. All of my loved ones came to celebrate fun and me, and yet I could barely get up to join them. I only ate croissants and noodles cause my stomach hurt so bad and was so painful and weak. I cried all the time I was there. The day we flew home was my husband’s birthday. I asked him what he wanted me to give him and he said.… for you to go the doctor to find out what is going on with you. The next day I was in the doctor’s office and he off handedly stated.…You know.… they are starting to think that IBS could actually be a gluten allergy.… let’s run some test… By that Friday, my test were back strong positive and then sent on to be confirmed with never eating gluten again. I thank you Shauna for your blogs as i found you the first day. You helped me go from a place of no.….….….. to a place of yes… and now a year later… i am finally taking control of my life by taking control of gluten’s role in my life. I will never have children nor will I be able to eat a croissant in Paris when I eventually get there.…. but i will be able to ENJOY my time because I feel so in control of my life. ( especially with a fuller head of hair to sashay around with).

  66. Mama without instructions

    When I was pregnant I started to have UTI symptoms and would test positive for blood in my urine. They would culture and no infection would show up. I figured out myself that it was potatoes and then wheat. I went back to eating wheat for awhile when my son was born but when I got pregnant again a couple years later it was clear that my body was rejecting wheat and all gluten in a serious way. After my daughter was born I tried wheat here and there again and continued to have terrible bladder pain and all the UTI symptoms in addition to fogginess and fatigue. I only have those issues when I eat out and have been exposed to gluten somewhere. I am very careful but I suspect soy sauce is often to blame as the hidden culprit. My symptoms are mild compared to many and I haven’t been tested (and won’t go back on wheat to do it) but I am certainly much healthier without the gluten. So far my kids have no issues and basic food sensitivity tests don’t pick up on wheat.

  67. Lisa

    Fatigue (would sleep 12 hours at night and need a mid-day nap just to make it through the day). Brain fog. Extreme bloating (looked between 6–8 months pregnant on most days by the end). Gas. Migraines. Infertility (has not gone away — boo.) All this led to depression, but that was the only thing for which I was ever given treatment. My doctor said I was just gaining weight due to age (although he couldn’t explain why I had this “weight” one day and not the next). I finally watched a special about gluten intolerance and was relieved when that was the magic cure. I have no official diagnosis as I will never eat gluten again just to get a diagnosis. I feel like I’ve been given a fountain of youth. I feel great, have lots of energy, and even have a flat stomach again.

  68. kb

    Can TOTALLY relate! The birth of my first child really set my Celiac in motion. Mild symptoms until then—always tired, always ‘on a diet’. But the second my daughter was born—-I was not well. And I did not recover from the strange constellation of symptoms that kept multiplying until our whole family tested positive for a strange condition called Celiac Disease in 2005—when I was 35–after being weirdly ‘sick’ for 13 years. 13 years! I attributed most my symptoms of headaches, extreme fatigue, painful skin, acne, bleeding gums, heartburn, Raynaud’s, bloating, inability to lose weight, chemical sensitivity, hormonal disruption, moodiness,etc. etc. to getting older and having kids—-well, that’s what the Dr.‘s said anyways! It was our daughter’s CONSTANT illnesses, stomachaches, headaches, extreme moodiness, bloody noses, bone pain, joint pains, allergies, ‘wavy eyes’, ‘learning disabilities’ that caused us to seek testing.

  69. Dana

    I started to suspect I had celiac my sophomore year of college and it took me thankfully only a year to get an actual diagnosis. I had gotten sick my freshmen year with mono and had never been healthy since, every time I would eat I would get sick, would be in pain, lost close to 20 pounds and I was one of those people that couldn’t afford to lose 20 pounds. My mom started taking me to doctor after doctor and they tested me for ulcers, irritable bowel, etc.
    I was in nursing school and decided to start doing my own research and finally approached my primary care doctor with the information I had found on celiac who absolutely blew me off and told me it was absolutely impossible, it was “too rare” and that could not be the case. I decided to try again with my neurologist who I saw for a history of migraines, he had to do blood work anyways and asked him to add the celiac panel, when I explained my reasoning he had no issues doing it. All the results came back positive and I was sent for a biopsy for an official diagnosis. Needless to say I have since changed primary care doctors.
    I have been gluten free for almost 5 years since then and the stomach issues have resolved, my migraines have improved significantly and I am no longer tired all the time.
    It is amazing also how many people I went to school with and now work with have been able to educate about celiace and being gluten free just by being aroudn them. I am frequently asked about why I eat the way I do and am given the opportunity to share with them about why i am gluten free. I am amazed at how many people in the health care have not met anyone that has celiac or is gluten free.

  70. Shannon

    I had GI issues for the majority of my adolescent and adult life (I am now 30). I attributed them to the years of being on antibiotics and other harsh treatments for my acne. At first, my GI issues manifested as really painful constipation, but in 2009 the symptoms started to change. After eating (within 30 min), I would become extremely (painfully) bloated and would have horrible and embarrassing gas (which sometimes I did not have control over). In July 2010, I took a trip to Mexico and came back with what I thought was a stomach virus. It took about 3 weeks to clear whatever infection I had, but then my GI distress felt like it quadrupled — every time I ate, I experienced bloating and gas, major headaches and fatigue, and then I would switch between being constipated and having diarrhea. I would experience major acne flares as well. As a result, I was extremely depressed, fearful of eating, and this all continued to snowball until late 2010. I thought that I might be intolerant to lactose, caffeine…I tested everything except gluten!! It was not until I got extremely sick after eating a muffin that it all clicked… I have been gluten-free since December 2010, and have found that I am also extremely sensitive to “the gums” (xanthan and guar gums). I am SO SO thankful for Shauna (and Danny too!) for this amazing website — thank you so very much for bringing this supportive community together!! And of course, for sharing all your recipes and wonderful, poignant stories :).

  71. Pat McCumber

    I am a follower of yours & appreciate the great recipes you have provided. I am not Celiac or gluten intolerant but I am anaphaltic to wheat. I suffered many of those same symptoms for years, the brain fog, daily itching, daily headaches, eczema,. I was getting worse diarhea lasting for days, extreme fatigue. I have known for years I had a problem if I ate too much wheat, but the day I consumed some Taboulleh salad and then experienced every symptom of anaphalaxis ended my consumption of wheat. There have been times when I have been exposed for which I suffer. I have to thank you all for all the information that the Celiac community has provided to work with this allergy.

  72. Caneel

    Great post, Shauna! For us, it started with my husband. He had been showing elevated liver enzymes in his annual physical exam bloodwork each year for about 9 or 10 years. He went to several doctors about it, none could explain it. Each year he would have advanced bloodwork done, ruling out things like hepatitis etc. He had several ultrasounds, CT scans etc. They couldn’t figure it out. Finally the second internal medicine doctor he saw suggested that he have a liver biopsy to try to figure things out.

    A liver biopsy. I said NO WAY. They aren’t doing a liver biopsy on my husband when they have no specific reason to go in there and mess with his liver except to “try” to figure out what’s going on. No guarantee of answers with such an invasive test, in his case. So, I started researching more (I’m a journalist, I research until I get the answers I want, then research again). I’d done so before and this “celiac disease” thing kept coming up, but I’d dismissed it. He didn’t have the “classic” symptoms. This time I paid more attention. I told him about it and suggested he get tested. He kind of said, “Yeah, okay” and then went about his business. You see, I’m also OCD and neurotic at times with my research — especially relating to health issues, so he was used to hearing me say things like this. (I’ll also go on the record as saying that more than 90% of the time, I’ve been right in my “diagnosis” and our healthcare practitioners have at times been impressed. :) )

    Fast forward a year or so later, my father-in-law was getting increasingly ill. Severely ill. GI problems, joint problems, you name it. I kept thinking it was all related and wondered about what I’d read about celiac. Bingo. After he’d been to countless doctors and specialists, he was finally diagnosed with celiac disease. My husband took it to heart and got tested a few months later. The bloodwork was off the charts with showing positive for potential celiac, so he went on with the biopsy, which was also positive.

    My husband never had “classic” symptoms. Any GI issues he occasionally had, he attributed to normal life. Any fatigue he felt, he attributed to stress at work, having young children, not getting enough sleep, etc. The main thing was the liver enzymes. They have been normal since he’s been off gluten, going on 2 1/2 years now.

    After my husband’s diagnosis, we had our daughters genetically tested to see if it would be an issue. Results showed it might be, so we had them tested to see if they were reacting to it yet. They both were. My youngest had terrible eczema that pretty much disappeared after going off gluten. Based on their genetic tests, I also got tested to see if I was reacting to it. I was. I got off. We didn’t have biopsies, we didn’t need them to convince us that we needed to be off. If our bodies weren’t handling it well, it was bad for us. I had stomach problems for years that disappeared after going off gluten. I have been accidentally glutened three times in the last two years and have been violently ill each time. I have no desire or cravings for the stuff.

    So, that’s how all four of us got off gluten. One with diagnosed celiac, the other three of us saying we are “gluten sensitive” or “intolerant” depending on the crowd we’re talking to, since we didn’t have the biopsies. It’s easier that way, anyway. No chance of cross-contamination. And we are healthier.

  73. Kathleen

    My symptoms were extremely mild — so mild that I never thought I had a problem! Back in summer and fall 2009 I experienced a period of poor health — I was always catching cold, achy, not feeling well, etc. which I attributed to a draining emotional situation I was going through at the time and nothing really physical. Finally in November I came down with a bad flu and went to my doctor. He’s the type that LOVES to test for just about everything, so he signed me up for a whole gauntlet of blood tests, including Celiac.

    Of course, then I got over my flu and didn’t bother going back for the blood tests until about March. I had a feeling of dread when he called me into his office to discuss the results personally. He told me I might have celiac disease, which I had never heard of before. He was really quite excited, and told me that he’d been learning lately how common the disease is so he was recommending all his patients be tested — I was the first of them to be diagnosed (what a great doctor, right!?). I had the upper GI endoscopy in May 2010, and there it was. Celiac. Confirmed.

    On May 31 I bought a fresh baked loaf of french bread from the grocery store and ate every crumb. That was the last gluten I touched. What happened in the months afterward was really discouraging though — I was sick! I started experiencing fatigue, mental fogginess, irregular periods, irritability, mood swings… basically I was all over the place. I should have taken this as evidence that gluten really was having an affect on my body, because my body sure did react to the absence of it! I think I just took a while to regulate my system. Luckily I love to cook so the actual food transition wasn’t very hard for me (thank goodness, or I might have given it up last summer when the lack of gluten was making me feel terrible).

    I stabilized about two months after going gluten free, and started to feel really good. I never realized before that I really did have mild stomach troubles — bloating, constipation, discomfort, etc — until they were gone and I felt amazing. The biggest change is that my birth control pill, the same one I’d been on for years with no problem, started having a terrible affect on me almost the day I stopped eating gluten. I won’t go into details, but I spent a seriously miserable couple months until I realized the problem and switched brands, which helped immensely.

    It’s been almost a year now, and I feel amazing. My mind is sharp, my body is a tank, and I have more energy than I ever thought possible. Most stories I hear are about people who are sick and start to feel better the moment they stop eating gluten. My own experience is different, and I had to feel worse before I could feel better. So, for anyone who might be in a similar situation, don’t feel discouraged. Stick with it, and you’ll get there.

    1. Sarah

      I totally went through a long withdrawal period and am learning in part sensitivities to other foods (dairy, xanthan gum etc.) but I do envy the people that felt better overnight! At least it does get better!

  74. Debbie

    I am only recently GF…maybe 6 weeks now…The last few years I have been suffering from alot of stress related sicknesses…I researched building up my immune system and they suggested eliminating gluten…I stopped eating it and after a few weeks if I had anything with gluten in it I was immediately sick and my head was in such a huge fog…I felt as if I was on a drug…it was horrible…I made an appointment with a ND and he said to test to see if I had Celiac disease I would have to go back on gluten…I told him no that I was not willing to do that…so I remain untested…I do know I am at least gluten intolerant..but the good news is I keep finding things I no longer feel that I would never have related to Celiac…I now have no pain in my hips…I don’t have to stop and take a nap on my way home from work…I have tons of energy…I am happy, no depressing thoughts of doom…no bloating stomach…and I have lost the 10 pounds I have tried to loose…I never want to eat gluten again…I love bread and I miss bread, but not enough to sacrifice my health…Thanks Shauna for your blog…I feel like a stocker…I read everything you write…

    1. Amy

      Try Food for Life Brown Rice bread at Trader’s joes which is wheat and gluten free. It’s awesome!

  75. Carly

    I was extremely nauseous 24/7, so tired I could barely move, and weighed 79 lbs which is extremely underweight for a thirteen year old, very tall girl like myself for months before the doctors figured it out. It has been almost four months since I gave up gluten and I still don’t feel completely better yet, but each day I feel a little bit better and a little bit closer to feeling like myself again.
    For me, cooking, baking, and eating is what my life revolves around and depends upon, and after many. many months, I am finally getting it back.

  76. Candy

    Joint pain that was pretty much ignored since I’m nigh on 60 and figured it was arthritis (it is). But then I had a horrible outbreak of eczema on my hands and feet, and figured something was up. I started reading research on the inflammatory properties of gluten, went to all whole foods (which I pretty much did anyway)and eliminated all gluten. Within 5 days of being gluten-free I was a new person. Much less back pain, knee pain, and eczema is practically gone — it’s hard to distinguish those rough spots from callouses on my feet from exercise! I can tell when I cheat, as my feet start to burn and I have a headache about 6 hours later. Then I think back and realize what I ate, and gluten is always the culprit. This is doable, it’s just hard to eat out, but we don’t do it much anyway. I’ve learned to pack snacks.

    I still need to make your whole grain bread sans gums — I suspect gums may be an issue for me too.

  77. Rhonda

    I was diagnosed March 23, 2010. I thought my body was rotting from the inside out. Here I sit a year plus after my diagnosis still feeling the effects of Celiac. Residual damage (I’m 44 and went undiagnosed my whole life)? Refractory Celiac? Yet ANOTHER small intestinal bacterial infection and/or esophageal thrush? Maybe another autoimmune disorder? I don’t know, but it hurts to read stories of miraculous remission from other Celiacs on 2, 6 or 12 weeks. I still struggle. Luckily I have a team of physicians who are continuing to investigate and who are very caring and understanding. If course, it took me practically my whole life for the medical community to believe me, but at least I’m finally getting appropriate care.
    –Rhonda (two sisters gluten free)

    1. Jessika W.

      I was diagnosed with celiac disease in May 2009. I only had symptoms for four months, and my villi damage was mild. However, I will say that it took FOREVER for me to feel completely better. I too used to read those “in-two-days-I-felt-better-than-ever!” stories and wonder what the hell was wrong with me. Now, two years into the GF diet (and I am STRICT), I can truly saw I feel better. I think some people just take longer to heal.

    2. Jessica

      I am really curious whether other people have had it take a while to feel better. Has anyone had the experience that you didn’t seem to be improving at first, but over time you felt much better?

  78. suZombie

    Ever have your DR suggest that after endoscopy, autoimmune panels, and allergy tests that the next step is an HIV test? I was 24. I was freaked.

    Yes, I was moody, bloated, and had horrific acne. Joint pain, chronically underweight and hair falling out. My teeth are soft with bad enamel. And, the brain fog! Wowsa. How did I ever succeed in life up to then?

    I still have some symptoms… two months of cross contamination killed me this year. The depression, hayfever, and fog are better, but I’m still underweight. I lost over ten pounds. I cry when I get on the scale. My friends give me that soft voice, worried look. My jeans are falling off.

    I’m exhausted. By all of it.

    I need a vacation!

  79. Lisa

    I have battled GI issues for the past 15 years. First I was told I had IBS and to take citrucel. I couldn’t even take 1/4 of the regular dose. It made my symptoms 100 times worse (later I found out it’s made from wheat). Later in life, my husband noticed that my GI issues seemed worse after eating wheat products, especially bread, pizza, and pasta. Often times I would get nauseous immediately after eating these foods. He mentioned the gluten issue, so I got the blood test… negative.

    Fast forward 5 years and my GI issues got worse. Now I was nauseous all the time, could barely eat, and suffered from numerous lower GI issues as well. After years of saying “I just have a sensitive stomach,” my husband said “enough is enough, not a day goes by where you don’t complain about your stomach at least 3 times a day… you have to figure out what’s wrong.” So I had the endoscopy, and got “diagnosed” with acid reflux. And my celiac biopsy came back negative.

    I have had numerous docs tell me “you don’t have a gluten problem.” But I decided to go gluten-free anyway, and pretty much every single GI issue I have ever had has cleared up. I got off my Nexium as well, which was giving me some nasty side-effects.

    I am definitely one of those “I don’t have celiac, I just have an intolerance” people. But all I know is that I feel better, and that is all I care about. : )

  80. Erin

    My symptoms were CRAZY! I had cystic acne, and crazy menstrual patterns, ovarian cysts, abdominal pain, anxiety, depression, fatigue, insomnia, nausea when eating pizza, waffles, pasta, etc., eczema, a CRAZY rash all over my body that didn’t respond to 3 different treatments (was never explained, they just said it’s probably contact dermatitis, then gave me a shot as a last resort and it went away), high white blood counts for no reason that could be explained, recurrent UTIs and yeast infections, bloating, brittle nails.…I could go on for days. But ALL of this has gone away since I stopped gluten!!!!

  81. TH

    I have a gluten sensitivity (not Celiacs), and I just started a GF diet yesterday. I have unexplained dermatitis that started during my first pregnancy. I’m hoping a GF diet will help– sounds like that’s a common symptom. And I have also been dizzy everyday for over 4 years, with no diagnosis– and, yes, I’ve seen every doctor out there (ENTs, neurologists). I don’t know if a GF diet will help, but I’m really really hopefully that it will! Has anyone out there experienced dizziness that has resolved by a GF diet? Fingers are crossed… Wish me luck!!!

  82. Tami

    When my daughter was four and a half, she began to freak out about any little thing and stopped looking people in the eye. Her behavior changed so much that I was so worried she was becoming autistic. Then she started complaining about stomach aches when she didn’t like dinner and soon stopped eating even her favorite foods. Luckily, her doctor immediately sent us to a gastroenterologist who tested for celiac on the first visit. It ended up being about four months of noticeable symptoms before we got the diagnosis, but her growth rate had slowed down quite a bit and she barely gained weight that year so I’m sure she had it for longer than the four months. She had had a bloated stomach and mushy stools for a while and had horrible dark circles around her eyes. One week after getting her off gluten, her personality started to come back. It was amazing how fast she healed. The dark circles are gone from her eyes. Her digestive systems works great. She’s a happy healthy young lady and I am eternally grateful for both her pediatrician and her gastroenterologist.

  83. Nicole

    I have never received a diagnosis. I started feeling really horrible the summer I graduated college. I’d eat, and my belly would look like I was 5 months pregnant, then I’d fall asleep immediately after eating or run right to the bathroom. As things developed my face would get red and swollen when I ate gluten, I got terrible migraines, I gained weight, had awful heartburn and would throw up. I’m sure there were more but those are the big ones that stand out now.

    After a few months of this being really bad, my future mother in law suggested I try doing a carb free diet. She had tried it and felt amazingly better. So I did. and I felt better too. Things were good for a while and then Thanksgiving rolled around and I said I’m not sticking to this diet on a holiday, and boy did I pay. In front of 18 people, there I was with my “pregnant belly” in pain and really hurting, almost immediately.

    I started to do some really heavy research on what this all could be. I had looked before for one thing or another online, but couldn’t find anything concrete. And then I came across Celiac somehow and thought “Hey this sounds like exactly what I have”

    Cue countless doctor’s appointments, test, x-rays, biopsy, getting dismissed by doctor after doctor thinking I was a nut. I had already stopped eating gluten at that point, and I did actually try to go back to it to get a good test in, but I nearly passed out on the floor after 2 days and realized it wasn’t worth it at that point.

    I’ve been gluten free for almost 5 years now and the majority of the time I feel great. There were some other things that I’ve removed form my life since then, the main thing being hormones (birth control pills) that also helped. I know instantly when I’ve been glutened, the red face and the big belly come back so fast, its like they never left!

    This blog has been an amazing inspiration to me, so Thank you big time for writing it!

  84. Becky

    I was diagnosed with Celiac Disease on June 4, 2009 after about 4 years of digestive problems (bloating, gas, diarrhea, stomach aches after every meal). At first I was shocked, devastated thinking of all the things I would never eat again. After grocery shopping that first day, I came home and cried. But after the first few days, I felt so much better, I really felt like I had been reborn! Since then I have seen the diagnosis as a “blessing in disguise” of sorts. Not only do I feel great, but I have discovered how much I love to cook. It can still be hard sometimes (the overwhelming anxiety I feel when eating out, the cravings for Tastykakes), but nothing is better than feeling healthy! Thank you for this wonderful blog, I always look forward to new posts :)

  85. Kari

    I was diagnosed with endometriosis when I was 24, but looking back, I figure I had it long before that. Some of my symptoms have included pelvic and abdominal pain, heavy bleeding, intestinal issues, back pain, headaches, and infertility. I’ve had two major surgeries, gone through temporary menopause twice before the age of 32 from Lupron injections, had multiple CT scans and multiple ER visits…but no doctor has ever brought up nutrition as a way to treat this condition. After a year of particularly harsh symptoms, including regularly waking up in the middle of the night from extreme pain, I began to research nutritional treatments for endo on my own.

    For a year now I have been avoiding wheat, among other things, and while I am not completely symptom-free, I feel so much better than I did. For me, the issue seems to be the inflammatory properties of the wheat rather than the gluten, as I can tolerate spelt. Gluten-free blogs like yours have been so helpful to me as I have developed a new, pain-reducing way of eating. While I am not Celiac, I identify with many of the symptoms and issues that you write about, including a seeming lack of interest in much of the medical community about our conditions. Endo is also a condition that can take many years to diagnose. Thank you for your upbeat attitude, wonderful cookbook, and delicious recipes. Your new whole-grain bread is the best bread I’ve eaten in the past year. Thanks.

    1. Linette

      Hi Kari and Shauna
      This sounds like my story.
      I was also diagnosed with endo and my lovely gynecologist suggested a link with the inflammatory properties of wheat.
      I suffer from many of the celiac symptoms but are not a celiac. I have been off wheat for almost 6 years and was blessed in this time to fall pregnant and have two gorgeous children. They are not exposed to gluten or wheat, I might have them tested one day. But for now it is just a way of live.
      My sister has been diagnosed with lactose intolerance for years and only this year has she been diagnosed with a wheat intolerance.My dad had colon cancer and I now suspect it was due to a wheat intolerance.
      I love the blog Shauna and has bought your book. Thanks for being so inclusive on your blog. I always find it hard to explain to people, that I am not a Celiac and it is not just a whim to be wheat free.

      1. Susi

        I’m so glad to hear from others who have improved endometriosis symptoms by eliminating wheat/gluten! Thanks for sharing your stories, and thanks, Shauna, for starting this discussion and bringing us all together.

        I was diagnosied with stage III endometriosis 10 years ago during laparoscopic surgery. Symptoms improved after surgery & I was happily able to get pregnant. I felt wonderful during pregnancy and could eat anything — no troubles. Several years later, the endo returned, along with headaches and joint pain. I stumbled upon a couple of books on diet & endometriosis (Dian Shepperson Mills and Carolyn Levett), tried eliminating gluten and dairy — - wonderful results! I’ve never felt better!!!

        I asked my family doctor to do the initial blood test screen for celiac, since I had noticed I felt better in so many ways after eliminating gluten for endometriosis. The results were negative, but I still wonder about this (I had eliminated gluten for at least a year before the blood test & ate gluten each day for about a week prior to the blood test).

        I do find it a little difficult, navigating through daily life & social situations and explaining my reasons for not eating wheat and dairy. Reproductive problems are not exactly a great conversation starter. While I am glad to see so many more gluten-free foods and awareness these days, I sometimes get odd reactions, like folks wondering why am trying the latest “fad diet.” This is yet another reason why I so appreciate Shauna’s blog — thanks for celebrating healthy food, healthy living, and bringing such a positive joy to this topic!!!

        1. Aleisha

          I didn’t see this post before I replied to “Laura, May 17″! Yes, this is the book that I read as well by Dian Shepperson Mills. I am glad to see that you have found a good resource for your endometriosis as well!

        2. Kari

          Dian Shepperson Mills and Carolyn Levett gave me my starting point, too, for eating my way to health. In addition to wheat, cow’s dairy and soy cause the most issues for me. There is so much wonderful food out there to eat, though. It just takes being more creative sometimes. I’m glad to see that there are a number of us endo sufferers who enjoy Shauna’s blog and are finding natural ways to manage our symptoms. I wish you well, ladies!

  86. Melissa

    My 2-year-old was a “great eater,” praised by family members for her enormous appetite, yet slim body. I noticed that her bowel movements gradually got looser, and in particular, whenever she ate fat, she’d leave oil slicks in the toilet. She had a huge appetite for fat, but this was probably because she was starving for it, unable to absorb it no matter how much she ate. Since cutting gluten out of her diet, I saw a huge change in her bowel movements in just a few weeks. No more oil slicks!. She still eats a lot, but I figure she has to catch up on a lot of nutrients.

  87. Jen

    I was in an accident at 13 that I feel activated my CD and probably was always GI before that. Shortly after the accident my grades started dropping and started having mood swings/depression. My parents didn’t know what to think and thought I was being a typical moody teenager.
    My periods went from week long and heavy to a heavy month being 1 1/2 days and very light. When I would ask my Dr’s they would just brush me off since they were monthly. I repeatedly asked for my iron to be tested because I bruised so easily and felt weak, as well as craved red meat constantly. I think because of the cravings I was always on the normal range.
    I went from having 1 tiny cavity to having numerous every 6 months and some quite large. Along with decalcification of my teeth. Every dentist I saw blamed it on soda, I’ll accept some but not all on the soda that I don’t drink anymore.
    By my late teens I figured out that when there was a big jump in temps I would go through this horrible stomach cramping and diarrhea. I had a choice of making 3 trips to the bathroom or just park myself in there for 2 hours. I now know that gluten wigged my hypothalumus, it’s job is to regulate body temps and mine doesn’t work, still.
    I tried going to college but couldn’t retain enough knowledge or focus long enough and ended up dropping out.
    I joke about coming from a long line of bathroom readers and figured I was just following the family trait with constant constipation that randomly would switch to diarrhea.t
    Fast forward to almost 4 years ago my now best friend but was just beginning to know her at the time was visiting. She is a gifted medium/psychic and was doing a reading and suddenly said “Your people are yelling at my people that you need to get off gluten — NOW!” Since I didn’t know her very well at the time and being a little skeptic about where the info came from I tried going low gluten and started researching GF. My brain fog was so bad I didn’t realize I had a lot of the symptoms and figured I was just gluten intolerant and would be good for a few days then go to Quizno’s for lunch. In this time period I also developed plantar fasceitis(SP?) and could only walk if I wore Crocs.
    About 6 months at the end of April/beginning of May later I developed this rash on my hand. Over the summer it spread — from ankles to thighs, my whole bum, and from above my elbow to my hands and it itched like there’s no tomorrow. No creams really helped, a couple took the edge off it. Luckily at the time where I was working my co-workers chose to work at home so my little corner was myself and could scratch where and when I needed. Finally September saw something mentioned DH and realized what it was. Had it biopsied to be sure, in October went GF cold turkey.
    In the 1st 2 weeks I lost 15 lbs of inflammation, I had more energy and felt so much better. In December I was snowed in my place for 2 weeks. Due to the foot issues and only able to wear Crocs couldn’t walk anywhere. Somewhere in that time I stopped itching, it had been going so slow I didn’t realize it at first. In January I was going someplace that required me to put dress shoes on, as I grimaced about putting the shoes on I slipped my foot in and NO PAIN! Not sure how long that had cleared up but I was so happy to be able to put my regular shoes back on.
    February I was at the bowling alley. My friend didn’t finish her fries and offered them to the rest of us. I knew there was CC but didn’t think that in 5 or 6 fries there’d be enough to react to. Within 10 min I wanted to put my head down and sleep, I could feel the fog drifting in, when I got up to bowl I could feel my body swaying. Luckily I got home before my belly revolted and started cramping. I felt so depressed the next day and started having panic attacks, I hadn’t realized they were gone till they came back and lasted about a week..
    I haven’t eaten any gluten willingly since.
    Since going GF the red meat craving is 99% gone, my periods have gone to 3 days and even had 1 4 day-er. Mood swings, depression, panic attacks — gone. Brain fog pretty much gone and now in trade school with a 4.0 GPA. Constipation gone, at first I was pissed since I could barely find my spot on the page before I was done, and that was my reading time but now I’m thankful that I don’t spend so much time in the bathroom anymore. Now when I see the dentist I’ve only had a couple of little cavities. My hypothalumus is still wonky and probably always will be but I get proactive about trying to prevent the reaction when I’m expecting wild temp changes.
    I didn’t see a friend for about a year from before going GF to after, I know I shocked her with my different personality. I told her my real personality was buried under the layers of gluten and finally coming back out.
    My face looked like Shauna’s before picture, now the redness and dullness is gone and healthy looking.
    I could go on but this is getting long.

  88. Lisa Rogers

    I think I probably started exhibiting my worst problems in the mid 90’s. I am not sure perhaps what triggered it, but I am sure I’ve probably had it longer than that. The first probable warning sign was this terrible oozing rash on my legs that nothing, I mean nothing helped it, and then it just went away. Not long afterwards I would get terrible abscesses (this is what I thought they were) around the apocrine glands under arms and other thin skinned areas. It wasn’t until maybe 4 yrs ago that I had a surgeon tell me what they were, Hidradenitis Supperativa. Not a good thing. I joined a group and someone noted that hers was tied to food intolerances/allergies. And the main cause was gluten and wheat for her. I also dealt with depression, exhaustion, mood swings, and poor complexion. Well my mom was also Celiac diagnosed. This started my quest, and it was nigh impossible to get a Dr here to test you properly. I at least got a blood test, but it was a false negative. Needless to say and moving along, now being without gluten and the other foods I cannot handle has completely changed my life. I’m losing the weight, and it’s staying off, my health has improved so much I feel like I have a new lease on life.
    Gluten isn’t for everyone, and not everyone can handle it. :) Thank you Shauna for this. :)

  89. Alee

    Symptoms since childhood, increasing in severity and breadth with age. Diagnosed (correctly!) by a great GP at around the age of 40. Two prior incorrect GI diagnoses — one around the age of 20 and the other around the age of 25 — first was for IBS, second for hyperacidity — first treatment was eating a wheat-bran-based fibre supplement daily which I aborted after two days because it simply made me feel too rotten; second was years of prescriptions pharmaceuticals to treat GRD. Symptoms included many GI and other symptoms which have already been mentioned in prior posts. I wanted to post to share my story about HD — the skin rash which sometimes accompanies CD and appears in different places on the body in different people. I suffered from years of the most painful rash — much like a diaper rash — which would become worse with body heat, moisture, hot climates, etc., spread over much of my buttocks, originating at the anus and causing anal fissures, occasional open sores and bleeding. Going skiing in spandex athletic pants, followed by a hot tub was a near impossibility and excruciating. I visited many doctors over the years (due to moves) including one I consider a really top-rate OB-GYN. All diagnosed on sight as a bad yeast infection but would later call (puzzled) to say that the lab results did not confirm yeast. I was constantly treated for yeast including the violet paint and oral antibiotics — I cannot emphasize how repeatedly this was done. I also suffered from repeat functional ovarian cysts and was diagnosed as statistically infertile with very irregular and extremely heavy periods. All of this disappeared two days after stopping the ingestion of gluten (and initially also diary). Four days post going GF, I had no symptoms whatsoever. I have now been GF for close to 10 years and I do seem to be one of those very sensitive Celiacs — I suspect from being symptomatic (and sustaining damage) but undiagnosed for so many years.

    Keep up the great work GF Girl — your transparency about this disease is a lifeline to many.

  90. Jeanne

    I got giardia. I knew something was really wrong. The doctor suspected giardia and sent me for blood tests and cultures. My uncle was diagnosed with Celiac 6 years ago. My aunts and uncles went for blood testing and in the back of my mind I always thought that sometime I should have a test for Celiac too. I asked the doctor if he would add a Celiac blood test to the list of blood work I was going to have. Both the test for giardia and the blood test for Celiac came back positive. When I told this story to my chiropractor he said that I got the giardia because my system was so compromised that the giardia (which a healthy digestive system would keep in check) just went wild.

    Thinking back, I didn’t have the awful symptoms many people describe. I did realize that most people don’t feel like they’ve eaten Thanksgiving dinner after having one beer.

    I am the only one who needs to be GF in my house. We are careful about cross contamination in the almond butter jar and I will order pizza for my husband and kids but our family meals are GF. We tried out pastas, made our own GF granola, crepes, muffins, pancakes, scones & cakes. If my daughters ever do need to be completely GF the transition should be easier for them.

  91. Katie

    I come from a family with autoimmune problems. I have always suffered from asthma and allergies. I have caught every cold I have come across, I have even had sinus surgeries twice. In my late teens and early twenties, I began having all sorts of medical problems and started collecting diagnoses. I had the sinus surgeries, hives, uncontrollable asthma, orthostatic hypotension (low blood pressure and high heart rate) fibromyalgia, rheumatoid-like arthritis, irregular bowels, horrible migraines, and was diagnosed with Rosacea and Sjorgen’s Syndrome Vs Seronegative Rheumatoid Arthritis VS early Lupus. In this time I had millions of tests, chest xrays, lab tests, cat scans, echocardiograms, tilt table tests, pulmonary function tests. I was put on several different medications, which did help somewhat. But I knew there was still a key piece missing to my puzzle. The overwhelming majority of these tests came back negative. I did have the antibody tests for Celiac at this time. I had some antibodies, but not high enough to count as positive. I did not have any of the other antibodies for any of the other autoimmune tests they tested me for: lupus, rheumatoid arthritis, etc. My digestive problems continued to get worse, as did my hives. My boyfriend’s sister went through a similar course and it was recommended she try to go gluten free. I began to do research on Celiac, gluten, and its affects and relationships to other autoimmune disorders. I found your site Shauna, and read your first book. I cried almost the entire time, because finally, someone understood, and someone gave me hope. I could get my life back, I didn’t have to be an 24 year old stuck in an 80 year old’s body. I gave up gluten for a week. I didn’t see any improvement. I introduced it back in. I had a horrible asthma attack and hives. I went to the urgicare center, told the doctor my suspicions and she told me that I should try it again, and give it at least a month. This day was my 25th birthday, and it was late. We stopped at my favorite pizza place on the way home for a goodbye pie. I have not had any gluten purposefully since. I felt so much better, after one month, that I have never thought twice. I have energy. My joints have improved 80% and I am off of two of the three drugs the rheumatologist put me on. I have not had an asthma attack since. I was having them every 6 to 8 weeks. After I realized my moisturizer had wheat in it and switched, my rash has all but disappeared. I get migraines rarely. I have no hives. I was able this I have a firm diagnosis of Sjogren’s Syndrome now– dry eyes, dry mouth, and minor joint/muscle aches. I am not in chronic daily pain and misery. My digestion is a million times better. I can live my life with the vigor and energy of a 25 year old. I will never look back. Thank you so much Shauna, you have been absolutely pivotal to my success. Words will never express my gratitude.

  92. Rachel B.

    When I eat wheat or anything with wheat in it, I get stomach pains and eczema. Back in the 70’s when hubby and I were vegans and we were baking our whole wheat bread daily, I had eczema from head to toe, much of it bleeding as well as since I was a kid I had stomach pains and major bloating which I actually thought was from eating meat. A friend gave me a copy of the book Eat Right for Your Blood Type and when I read what Type O’s should eat for optimum health, I thought, no, this can’t be right. It goes against everything I was taught, that whole wheat is so good for me. But I was desperate so I decided to try the suggestions for one week. By the end of the week, all my eczema was gone and my stomachaches were non-existent. I actually thought this was a coincidence but every time I would eat artisan bread the patches of eczema would break out and my stomach would hurt. Okay, no more wheat for me. I feel so lucky to have found out what my problem was so I could change the way I eat. I am also lucky that my husband happily eats whatever I do so we never have gluten products in our home.

    1. Mary Ann Reynolds

      I’m a Type O, had candida and tested sensitive to wheat (not gluten). Wheat is the worst offender for Os. Thanks for sharing this. Would love to have more data. Could catch it earlier!

  93. Julie V.

    I just wanted to write and say thank you for this post and for everyone that commented. I am going through the process of figuring out how to live with my gluten intolerance and this post and following comments have really been a blessing. I can see parts of my own story here and there in yours.

    I have had various symptoms since I was 10. I’m 29 now. It’s been a really difficult struggle to be so ill and go from doctor to doctor and find nothing wrong. I didn’t test positive for celiac, but I removed the gluten from my diet anyway. My husband says I’m a different person. I know I feel different. I think I probably have other intolerances also and am not feeling fantastic yet physically because it’s still a lot to sort through.

    I can say that the painful blistering rash that lived on my hands is finally gone, my face isn’t as flushed as it used to be and my coloring is more even. I’ve dropped some weight, but I still have a lot to lose. I don’t wake up in the night with intense stomach pain anymore. (When I was in high school this happened so often that my parents thought I was faking to get out of class. They became more sympathetic when I had to drop out of college and didn’t have any class to get out of.) I remember being so weak at times that I couldn’t walk down the driveway. I was diagnosed with IBS, Bipolar Disorder (the mental symptoms were far worse than the physical ones for me), PCOS, GERD, Fibromyalgia, Interstitial Cystitis and other things. I always tested positive for blood in my urine. I had terrible PMS and the cramps were enough to get me sent home from school. My thyroid would test hypothyroid and then test fine without meds. The doctors were all confused and basically thought I was crazy. I’ve spent a whole college tuition’s worth in medical bills and always wondered why I was spending all this money when I never got any better.

    There were times I wanted to give up. Luckily, I met an amazing man who stands by me to this day. He doesn’t eat gluten or dairy now either, but he could easily and without symptoms. I can say that I have been off gluten for three months now. The last time I went to my doctor she said, “Well, you’re not bipolar.” The relief from the mental symptoms has been the biggest and most dramatic change for the better. I have hope for more of the physical symptoms to resolve themselves in the future.

  94. Celia

    I’ve dealt with chronic fatigue, pain, and anxiety for just about as long as I can remember. I remember being in junior high and high school and not having the energy to finish a swim practice. I always felt like such a wimp. My first week of college I got a horrible infection complete with a throat abscess that left me with six months’ of debilitating fatigue (or so I thought). I was anemic. My teeth started eroding. I was sick ALL the time. Finally my senior year I was diagnosed with fibromyalgia and a “good luck” from a rheumatologist, who had tested me for RA, lupus, and leukemia.

    Since then my skin has gotten worse–horrible eczema. I’ve gotten many cavities, and for years had near constant canker sores. I got migraines. I had heavy menstrual bleeding with horrific cramping. Who connects that to gluten? I sure didn’t. Then I started having symptoms directly after eating. My fingers and face would get bloated; my stomach hurt. I went back to the doctor. She tested me for gluten antibodies.. That came back negative. I was tested for food allergies. Also negative. And lupus (again), and RA (again). All negative.

    Finally this year after two more rounds with various specialists I was diagnosed with non-celiac gluten intolerance after my endoscopy showed no signs of celiac. This doctor–FINALLY–told me that I needed to stay away from gluten for good. My “fibromyalgia” pain has almost completely gone away. The migraines have stopped. Most of the pain is gone. (Not all, but most.) The eczema isn’t gone, but it’s better. I am dealing with GERD, but I assume that’s probably associated with the gluten in a way, too, so I’m hoping that goes away eventually. I feel SO much better.

    For anyone who might have similar symptoms and doctors who won’t listen… PLEASE seek a second opinion. And if you can’t see another doctor, please just try eliminating gluten. It’s a pain in the rear, but it could really change your life if you’re sensitive. Now I can run around with my kids and make it through the day without needing to sit in a corner and cry because it hurts too badly. If I had known 15 years ago that the solution was this easy, believe me–I’d have been there.

    Also, thank you so much, Shauna, for you post and for including that article about non-celiac gluten-intolerance! I’ve shared this with as many people as I can think of who might benefit.

  95. Katie

    Ooops, I have a typo. I meant to say “I was able this year to heal without surgical intervention for my sinuses.” Which is a good thing :)

  96. Chris Monson

    I just got the official diagnosis last week. Before going gluten-free, I had a low-grade headache every day, felt like I was fighting hard to just keep moving after 2 pm, was either irritable or listless every evening, and spent life alternating between diarrhea, constipation, or gas pains.

    It was all manageable enough, so I just bucked up and did my best most of the time. Not feeling well was just part of the rhythm of my life. People referred to me as Eeyore.

    It took feeling better to recognize that something was really wrong in the first place (the gluten-free diet was almost entirely accidental, but I connected the dots, then my doctor confirmed it). Now I can’t bear the thought of going back. The symptoms come roaring back with the slightest mistake.

    It’s hard to feel sorry for myself, though: I’m too busy feeling good.

    For the first time in my life, I have some control over how I feel.

  97. Rachel

    I have aytpical Celiac Disease and was diagnosed a year ago. For years I have been very tired and fatigued and was starting to lose quite a bit of weight. I also have these other problems: acid reflux (much better now), acne, severe nose bleeds, easy bruising, anxiety/brain fog, sinus pressure and headaches, infections and some other stuff. Some of these problems I’ve had nearly my whole life (I’m now 33) and most I’ve had for at least 10 years or so. All the doctors I saw kept treating me for very specific health problems, but could never see me “as a whole.” It wasn’t until I traveled to Indianapolis and saw a sleep doctor that I was finally checked and diagnosed with Celiac.
    It amazes me how ignorant so many doctors are of CD. Not only that but they are incredibly misinformed and give me bad advice! I’ve also had a few doctors say my problems were mainly “psychological.“
    Unfortunately I have not gotten much better (my antibodies are still very elevated) and I’ve been trying to get to the bottom of this. I suspect that I must be continuing to accidentally ingest gluten in one form or another. And since I do not get sick or have a very bad reaction after consuming gluten, I can’t tell whether I’m continuing to ingest it or not. It’s truly frustrating.
    Thanks for writing this article…it voices how I feel about this issue in many ways.

  98. Andra

    The most obvious things I experienced were horrible bloating and diarrhea; I also had fatigue, night sweats, trouble sleeping and a series of weird rashes, none of which I ever connected with the gastrointestinal stuff…that is, until I stopped eating gluten and every single symptom went away within the first 2 weeks. I’m 35 now and it’s been around 2 1/2 years since I’ve gone gluten-free and I have no regrets! I never was officially tested for celiac–my doctor’s opinion was that the testing tends to be unreliable and it’s better to just work towards symptom resolution. Based on my own personal experience, I think I’m simply gluten-intolerant rather than having the autoimmune disorder and I seem to do fine without having to worry too much about minute cross-contamination (thank goodness). For what it’s worth, I also think I feel physically better for having reduced my overall carbohydrate intake as a result of eliminating gluten. I’d encourage anyone who even THINKS they may have a food sensitivity to give an elimination diet a try…you have no idea how much better you might be until you feel it first hand!!!

  99. Lea

    I didn’t make any connection with gluten intolerance and my symptoms as my doctor put it down to fibromyalgia, which I also have (another condition not understood very well within the medical profession) and my symptoms have been quite varied. In fact, it seems I’m still connecting some of them here while reading of other people’s experiences. Irritability, bloating, constipation, irregular periods, always feeling tired. I’ve also suffered from back pain the last three years, which during the first year was awful, but (perhaps by coincidence) considerably improved after I went off gluten a couple years ago. While at the massage therapist’s she recommended I stop eating gluten, and after the first week, I was already feeling much better. I just can’t describe the feelings of relief, even though I still had so many other things going against me, it truly was the light at the end of the tunnel.

    Thank you for being a true champion of celiac disease and gluten intolerace, you have made a difference in so many people’s lives and we appreciate it!

  100. Becky

    I had terrible GI symptoms for several months (along with alarmingly rapid weight loss and extreme fatigue/tiredness), and was lucky enough that when I finally convinced myself I needed to see a doctor, she did the celiac blood tests on the first visit. It took almost two months gluten free before the symptoms started to resolve, but once I really started feeling better I realized how sick I had been for so long without even knowing it. I think it happened so gradually that I didn’t realize anything was wrong; I just thought it was normal to feel that way (always tired, general low energy).

    I want to let people know that while some people feel better almost immediately after quitting gluten, others, like me, take longer. It was almost two months before the GI stuff started clearing up for me. I was really worried and discouraged when I wasn’t feeling better after the first few weeks.

  101. Laura Reoch

    I couldn’t figure out what was wrong with my son Mason from the time he was a toddler. He had diarrhea constantly. His bottom would be red and would burn when wiping. I took him to the doctor. Many times. I was told he had “Toddler Tummy”. Apparently many children suffer from this when new foods are introduced.

    I had no idea about food, food allergies, any of those things years ago. I tried to figure out what he might be allergic to but never had any real success. We did the poop test, twice, only to be told that he was apparently fine. Except for the chronic diarrhea and pain when going to bathroom.

    When I think back to those years when I had no idea what was causing his discomfort, I hang my head and cry at my ignorance. At my willingness to listen to a doctor tell me that he was “fine” when I knew he wasn’t.

    It wasn’t until he was 6 and in Kindergarten that things changed. As I was preparing to potty train his 3 year old brother, I realized that I was fighting a losing battle. How was I ever going to convince my younger son to step foot in the bathroom when his older brother screams in pain every time he’s wiped. It was literally that bad.

    We had a playdate with a family from Mason’s class. The mom and her two daughters came over. Her youngest daughter was “gluten free”. I had heard people talking about this here and there. It was something that was becoming more common or “popular’ as I was led to believe. I had overheard someone talking about how people were “jumping on the GF bandwagon even if they didn’t need to be on it.” I was curious and asked the mom about it. She put a great book in my hands, “Gut and Psychology Sundrome”. It was an eye opener for a lot of things and sparked me to want to do a three month gluten free test on Mason.

    The test on Mason wound up being a test on the whole family. Three months later, I asked Mason how he felt, what he thought about being gluten free. He was 6 at the time. He said, “I LOVE it!. I feel great. I’m sleeping better, I don’t have diarrhea anymore and I don’t have tummy aches.” Well, that was it. I was sold.

    I saw his doctor a few months ago. I shared with her that we were gluten free and that his symptoms went away. She looked surprised and checked her notes saying that we had done the poop test and it came back negative. Well, negative or not, being gf has made a HUGE difference in our lives.
    Laura

  102. Andra

    I also forgot to list migraines and mouth ulcers in the cluster of strange symptoms that all went away with elimination of gluten from my diet!

  103. Yc Le Pew

    IT IS NOT ALL IN YOUR HEAD!

    I couldn’t agree with this statement more, although after almost a year I feel so annoying talking about it endlessly.
    I have had severe migraines for years which is what started me GF– a cousin with Hashimoto’s suggested I try it after getting much better.
    Unfortunately that’s the one thing that didn’t clear up completely.
    Many other things that I thought were “normal” went away:
    seasonal allergies (now it’s my first clue that I’ve been glutened), gas, diarrea, restless leg syndrome, hot flashes, exhaustion, fuzzy brain, stomache aches– these are the biggies but there are more.

    Thanks Shauna for making me see “YES” and teaching me to enjoy food completely. Your food history in So Cal could have been mine, including the area, and it’s nice to find out WHERE food comes from as well enjoying the nuances of flavors as well as the other senses. I actually tell people I know what “food sensualist” means now, as reading your love of cooking and eating reads like food porn :)

  104. Sarah

    I am one of those people who “didn’t have symptoms.” My niece, age 19, was the first one in my family to be diagnosed with Celiac Disease. She had been having many digestive problems and had quickly gained quite a bit of weight in a short time. I figured that since it can run in families I should be tested the next time I had blood drawn. Surprisingly, my blood test was positive. So was my subsequent biopsy.

    Looking back, I did have many symptoms but they were varied and I had assumed that my digestive troubles were just normal for me. I had frequent heartburn and indigestion, mild cramping a little too often, soft or loose stools, and I was gassy. I never would have considered seeing a doctor for these mild problems. I also have psoriasis, asthma, and was diagnosed with Bipolar Disorder Type II. Since I was diagnosed with Celiac disease and went completely gluten free 10 months ago, my psoriasis has improved tremendously, my asthma has almost disappeared, and my moods have stabilized so much that I have been off of my mood stabilizing medications for 6 months. Both my GI doctor and my psychiatrist now attribute my severe mood instability to Celiac Disease and neither feel that I truly have Bipolar Disorder. Since going gluten free, I have also realized that I have difficulty with both dairy and oats.

    My daughter tested negative for Celiac Disease. She is now 13 years old, but has a very long history of ear infections (40+ infections, 3 sets of tubes) and chronic sinusitis (50+ infections, 2 surgeries). As I was researching Celiac Disease and gluten free living, I repeatedly encountered sinus problems as a symptom so we decided to try her on a gluten free diet for 3 months to see if it made a difference. It did. Within 2 weeks, she was able to stop using nasal steroid sprays for the first time in 11 years! She has not had a sinus infection since we removed gluten from her diet. It is truly amazing. She is also sleeping better, is less moody, is spending less time on homework, and is doing better in school. Only time will tell if this gluten intolerance will turn into Celiac Disease or not (I’m sure she will try eating gluten eventually…), but a gluten free diet is certainly making a huge difference for her.

    In the last year, many family members have been tested, and three of us are positive for Celiac disease. Three others have seen major changes in their health after changing to a gluten free life. Both my sister and I have completely gluten free households now, and we have found that having someone to research with, cook with, and share ideas with has made it much easier.

  105. jess

    For years, I had joint pain. As an early-20-something, I had knee and back pain as bad as my grandmother. Unexplained, uncontrollable anxiety. Depression. Symptoms and signs bordering on manic depression. Unexplained high blood pressure. Unexplained vitamin deficiencies. Uncontrollable psoriasis on my elbows. Seborrheic dermatitis on my scalp. I was falling apart.
    Finally, two things happened. First, it went digestive. Bloating, gas, steatorrhea (how’s that one for a food blog?), constipation. Second, I met a wonderful, wonderful woman, the wife of one of my coworkers, who had self-diagnosed as celiac and who subsequently taught me that all of these things could have an actual cause. I went to the doctor (a new doctor, actually) and asked her directly if this could be causing it. She ordered the blood tests — negative on celiac — and told me I could still be “gluten sensitive.” She told me to try it. And I did, and I felt better within weeks.
    I was not dreaming it up. I was not acting out. But I wasn’t broken, either. This is mendable.

  106. Melissa

    There are the symptoms that led me to the doctor, and then the symptoms that in hindsight were my body screaming at me.

    The acute symptoms were a series of colorectal problems (fissures, absesses, fistulae) over several years that required surgical fixes, problems usually seen in this frequency in someone with Crohn’s or colitis or inflammatory bowel disease, none of which I had. They were accompanied by an endless cycle of constipation and diarrhea, and constant nausea and abdominal cramping–cramping that would double me over when I woke up in the morning. But the GI who the surgeons referred me to assured me this was all classic IBS. She prescribed an anti-spasmodic medicine and a therapist.

    I’d been sick in the gut for at least seven years, but I had long ago attributed it to the battle wounds of too much world travel, too many cases of dysentery to count.

    But then my husband and I couldn’t get pregnant, and on the recommendations of friends, I went to see an acupuncturist. One look at my medical history and she said there was no way I was getting pregnant until the rest of me healed. My body was clearly in crisis. We did a battery of allergy tests, and gluten came back off the charts. That–and an immune system that looked like it was barely functioning. She recommended I go off gluten immediately. I did, and I’ve never felt better. While my gut took many months to heal (and now, if I have somehow eaten gluten, it again goes spastic and takes ages to heal), within weeks I noticed other things: I had so much more energy. The headaches I’d been plagued with since a child were gone. The bone aches that I thought were a constant case of the flu disappeared and never came back. And my immune system–weak, weak, weak since I was a kid–was suddenly normal. And two years later, I am happily and healthfully pregnant.

    And that GI doc that prescribed drugs and therapy? She STILL doesn’t believe in gluten intolerance. Because the tests I begged her to do did not clearly indicate celiac, there must be nothing wrong with me. It must all be in my head.

    1. shauna

      Wow. Thank you for sharing this. I wish that doctor could learn a new way. Maybe send her this post? If she reads the comments of hundreds of people who have suffered with this? Perhaps she’ll open her mind? Mostly, CONGRATULATIONS on your pregnancy!

  107. Charity

    Where do I even begin? For about as long as I can remember I would get fierce tummy aches, diarrhea and the occasional migraine. As I started getting older more symptoms presented themselves more often. Horrible, sharp gut aches, diarrhea almost constantly, weight gain (I just kept getting fatter and fatter), ovarian cysts, irregular cycles, mental fog, fatigue, mood swings… and the list goes on. I finally went to the Dr. He suspected IBS. But suggested a colonoscopy and endoscopy just to be safe. They came back clean. My symptoms were worsening and the ovarian cysts were rupturing, ultimately landing me in the ER which resulted in ultrasounds and so on. It was starting to get expensive. A cat scan of my abdomen was recommended so I made the appt. ANYTHING to make me feel better! It showed a ‘spot’ on my stomach. Maybe ‘it’ was the cause of all my problems? So I was schedule for another procedure that was something like a endoscopy w/ an ultrasound from the inside. The spot was nothing. Had probably been there my whole life. I was told I had IBS and was offered a pain med. and told to eat more fiber and maybe try taking an antacid. What a joke! I was hurting and depressed and I was getting fatter. I’m not quite 5’4 and at my heaviest I was tipping the scales near 180. I had all but given up on feeling good. Then, last summer I had my 30th birthday and a big party/bbq. When all the pictures of the party started to roll in I was shocked! I didn’t recognize myself in the photos! Had I really changed that much? Is that really what I looked like? I have an amazing husband who insisted that I was beautiful just the way I was but something had to give. So I started doing my own research. Almost immediately I noticed I had lots of the celiac symptoms. But I was fat and all that I was reading said I should be skinny? Then I found an article about gluten intolerance… it mentioned that some people might suffer from weight gain etc. That was all I needed. I decided to give it a go. I was cutting out gluten. So on Aug. 11, 2010 I started what would be my ‘new life’. Within 3 days I was feeling better. Within a week I started dropping pounds. Within a month my ovarian cysts disapated. I was a new person!!! My husband said he’d never seen me this happy. I was telling everyone my good news. :) By Christmas time I had dropped over 26 pounds w/out even trying. Since then I’ve had the blood test done but it came back negative. I wasn’t willing to start eating gluten just to know for sure. But I have found that if I keep my diet clean, an occasional glutenous food doesn’t really bother me. However, there have been occasions where I have over indulged and paid the price. But those are few and far between. I am SO thankful for the blogs, articles and research materials available. They changed my life and I am forever grateful!

  108. Dianne K

    I suffered silently with the lethargy that incapacitated my life, as well as migraines and skin rashes. No one could identify the issue. For 8 months I had the opportunity to face my own mortality after being diagnosed with a 3-year life sentence by THE leading cardiopulmonary surgeon in the US. When that diagnosis was debunked, there was no help from anyone as I continued to deteriorate while enduring lesions on my tongue and throughout my mouth, migraines 3 to 5 days a week, emotional dysfunctions including agoraphobia, depression, rage and depression.
    Almost 2 years ago when I cut out gluten, my life was restored to something resembling “normalcy”. I am FOREVER grateful for a couple articles I read and this blog. My life has changed. My marriage has changed. I love each morning. I love each meal. We enjoy our love.

  109. Diana

    Oh my goodness. I read every single one of the preceding comments and I am just blown away by how our medical profession is still in the dark about this, and how much suffering is documented right here. I am so thankful many of you are feeling better!

    My story is a long one, so I’ll just list all of the symptoms I had throughout my life, from youngest to oldest:

    Terrible gas; severe seasonal allergies; GI issues (diagnosed with IBS at 17); fatigue, acne, long, heavy periods (9 days), joint pain in hands (blamed on my being a clarinetist); hospitalized at 21 for abdominal pain (ruled out appendicitis and sent me home). Many foods passed through my body completely undigested, sometimes after only 2 or 3 hours.

    Inability to lose weight despite sensible diet and a LOT of exercise (distance running, weight training); extreme fatigue; OCD; still unbearably gassy; seasonal allergies worse; rectal bleeding, hemorrhoids; debilitating intestinal pain; appendectomy at 23 (appendix was adhered to small intestine). Surgeon said my small intestine looked “not healthy” but didn’t tell me anything else (she was a Reservist and I never saw her again — downfall of military medicine).

    Had a baby in 2002, her stools were bloody (exclusively breastfed) and she was so gassy. I cut dairy and eggs and she became a new baby, I felt better than I had in years. Still tired.

    Got pregnant again when she was 13 months old. Never so tired in my life. Felt like the flu, everything hurt. Rashes started and didn’t ever go away. Exhausted, I don’t even remember my baby’s infancy at all. Blamed it on having 2 babies and still being on active military duty. Couldn’t digest anything (not even low-allergy foods), but I finally dropped some weight!

    Terrible sacroiliac and hip pain, sometimes all joints. Flu-like; low serum ferritin; fainting, low blood pressure (70/45 on one visit), fatigue, fatigue, fatigue. Brain fog; bad sleep (too itchy!); elevated fasting glucose with no dietary or other explanation; allergies got WORSE; rash persisted; doctor said I was “hypoadrenal” and advised me to salt my food and “try to get more sleep.” Severe rectal bleeding led to colonoscopy and suggestion that I have a “sphincterectomy,” a slice cut into my anal sphincter to make passing BM’s easier. No thanks! (How would I hold in all the gas??) Considered suicide but couldn’t imagine how my babies would ever understand the loss of their mamma.

    Spent 3rd pregnancy in 2007 almost completely covered in rash, which had been called “lichen planus” and I was told to go ahead, get pregnant, it will go away during pregnancy. It didn’t, and the itching was so horrid I had to use a very potent topical steroid just to get some sleep. Baby came, also highly sensitive so I gave up all dairy, eggs, and soy but she didn’t seem to get any better. Crazy colicky and reflux (baby) for almost 3 months. I was living on homemade granola (oats, wheat germ … ). I was so happy and in love with my children, but so tired. So, so tired — useless, really. And I had been so industrious my whole life. An overachiever. But now with the children I dreamed of all I could do when I wasn’t working was sleep. (It was hard to stay awake at work, too.)

    I got tired of being told I was depressed. Still rashy; couldn’t concentrate; everything hurt; tired beyond tired; gassy; HUNGRY LIKE A BOTTOMLESS PIT but restricted to 1400 calories because I have to make weight twice a year for work. Oil floated on the water in the toilet after I passed a BM. Sometimes I saw oil and blood. Got tired of being tired, sick of being sick. Couldn’t lose weight on a 1400-calorie diet and 3–5 miles of running a day, 5–6 days a week. Started using huge doses of caffeine to make it through the days and the workouts.

    Doctor came from heaven. Young guy, just back from deployment. He promised me I’d feel better. Ran any test I asked him for. Sent me to nutritionist who said I had the best diet she’d ever seen. Doctor arranged for me to get 3 weeks off to sleep. SLEEP. “Reset your body, then we’ll see what happens.” Nothing happened, I still felt like I had been hit by a truck. Achy, exhausted. Tests for bone density, Rheumatoid Arthritis, thyroid … I felt certain something was wrong with my endocrine system. My periods got stranger, I didn’t think I was even ovulating anymore.

    Vitamin D test came back severely deficient. Mega-dose supplements, levels didn’t come up as they should have. Referral to endocrinologist in August of 2010 who didn’t care about my rashes but tested everything else, looking mostly for cortisol issue or celiac. Celiac? Really?

    I started researching and couldn’t believe it. My life, it all fit. Antibody tests came back … “alarmingly negative, undetectable, immeasurable IgA … ” she said I “couldn’t have celiac” but a study I had just read indicated that many celiacs go undiagnosed because they are actually IgA deficient. They make ZERO IgA (an immunoglobulin). I decided to go gluten-free.

    First, searing headaches. After a week, I felt like a new person. Rashes gone. NO GAS. Seriously, I mean NONE. Like maybe 3 toots a day. In 24 hours. (My kids can’t believe it.) Vitamin D deficiency corrected. Sleep comes easy now, I get tired like normal people and feel refreshed after a good sleep. Mental acuity is the thing I am happiest to have back — I’m sharp again! Appetite is regular. Periods regular and down to 5 easy days. No more oil or blood in the toilet.

    I found this blog on my first day gluten-free (September 1, 2010) and I cried when the photo was of an unbelievable pasta dish. I never made it (avoiding eggs) but I had found a foodie! I had instant hope … there was more I could eat than not, and it would be delicious. I don’t miss the gluten foods anymore, either — I don’t go for GF substitues of most items (not worth it) and instead crave and enjoy those foods that are gluten-free by nature. The hardest thing to give up was my Panera habit so I hope they find some way to introduce some good practices that will allow me to go back there again soon.

    I know it now when I get glutened. I’ve become incredibly sensitive and I get contaminated in my own kitchen all the time. When school lets out for the summer, I’m putting my kids (8, 6 and 3) on a GF diet. The three of them have the worst gas and crave gluten products like crazy. Seasonal allergies, lots of food sensitivities even as they grew out of infancy. Their diets are quite healthy (minimal processed food, lots of fresh, whole foods) but it’s time to get rid of the gluten. My husband will have no choice but to go along if he wants to eat!

    I work with breastfeeding mothers and I believe strongly that many, many breastfeeding issues are related to and can be fixed by changes in the mother’s diet. If I had it to do all over again, I would be gluten-free in my pregnancies and when my babies were infants, whether I had symptoms or not. I’d love some research to back me up on this so I can recommend these things to mothers!

    I am thankful to be gluten-free at this time in history when there is awareness and there are options. I can’t thank you, Shauna, enough for your voice and for your tireless work. You’ve found that sweet spot where what you love to do is what the world needs and I hope you and Danny can continue to nurture us even as you nurture your growing family.

    1. Llysa

      My dad was a chiropractor who worked extensively and studied nutrition. I was probabably one of the only kids in the 60’s who LIKED to take her vitamins, because they made me feel better…
      He told me when I was in high school I was probably gluten-sensitive, because I craved it so desperately… not a useful note in my house, as my house had no gluten issues whatever, but — looking back — I am sure my sensitivity comes right from the Irish side of the family.
      It is a common thing, to crave that which is bad for you(in the middle of the ‘addiction’, whether is it sugars, gluten, or bad boy/girlfriends!
      RE: Panera — WRITE THEM. My sister works for a bakery in AZ that was recently bought by Panera, and because of her issues (an anaphylactic reaction to alcohol — which does NOT ‘cook off’) and her understanding of my issues, has led to great conversations at her store, and a heightened awareness of ‘if you make, they will buy it!’. But — it was a shock for them to realize that Dijon mustard was keeping people from buying certain products, or the extra ‘thickener’ of flour in the soup — when a non-gluten alternative would work. Talk to your local store manager, write to the regional offices. If it is useful, let them know in Australia, for instance, EVERY bakery I went into last year had at least 2 gluten-free options. It was great.

      Congratulations on figuring out what you need — but don’t be afraid to make the house gluten-free. [There are enough opportunities for the kids to indulge if they are NOT sensitive]

  110. christina d

    This story is about my now 27 month old son. When he was 12 months old he was diagnosed with multiple life-threatening food allergies. He was NOT tested for gluten (we have since stopped seeing this allergist). He began to eat wheat products at 12 months old. He was “almost” walking on his own, had 4 words and was 25% on the growth chart. By his 18th month check up (we was 19 months by then), he had lost all of his words, still couldn’t walk and was crawling more than ever instead of cruising along furniture, had dropped to the 3% growth chart and had this “foggy” look to him. He qualified for NYS Early Intervention and there was discussion from the testing group that he had signs of being on the spectrum.

    At this 18th month check-up, our Dr. told us we should think of stopping gluten to see if it was an allergy/intolerance or Celiac’s. We stopped immediately and within 2 months he had gained 5 pounds, disqualified from speech therapy (was talking up a storm) and running everywhere. He had made steady weight and development strides ever since and disqualified from physical therapy not long ago.

    We have a GI, although we wasn’t tested for a Celiac panel as by the time we got our initial appointment it had been well past the 6 week mark of not eating gluten. This past round of allergy skin & RAST, with out new pediatric allergist, testing shows a mid-level allergy to gluten. Interesting stuff indeed.

    Until my son came along I never truly understood what food (its proteins & sugars) could do to the body. It still amazes me everyday. Miles is my hero, my inspiration.

    Thanks for this great post, your blog and your cookbook. Its been a lifesaver.

  111. Patty

    Let’s just say that for more than 20 years (probably) more, I dealt with increasing GI symptoms that turned out to be gluten intolerance. 20 years! Talk about learning how to talk back to your doctor and become an educated and demanding patient! Since my diagnosis this year, most of my symptoms have gone away. I don’t touch gluten at all because I simply cannot. Now, I don’t even make excuses. My diagnosis was a relief and a long time coming. Thanks everyone for your thoughts, and thanks to Shauna for sharing.

  112. Liz

    From about 10 years old I had migraines. By 13 I was put on a daily preventative medication to try and reduce my migraines. At 14 my menstrual cramps were bad enough that I’d faint from the pain. My previously perfect skin would break out in horribly painful acne. By 17 my mother would point out that I went to the bathroom too often and that “something must be wrong” with me. It never occured to her or I to seek a doctor. I also began feeling tingling pain in my finger tips and palms — like the feeling when your foot falls asleep after sitting on it wrong, only this wouldn’t go away — it hurt all the time. I was extremely sensitive to rough textures.

    Fast forward through my 20’s… migraines 2–3 times a week, so severe that I’d vomit from the pain. I had continued bouts of bad, painful acne, menstrual periods so severe that the doctor put me on continuous dose birth control pills just to help me not miss an entire week of work each month. My hair started thinning dramatically, and I got dark circles under my eyes. I started catching a cold or flu 3 times a year. I’d work 9 hours then come home and sleep for 14 or 16 hours. Normal weight loss was impossible, even on a doctor monitored 900 calorie a day diet. I experienced extreme bloating (wearing four sizes larger on some weeks, but four sizes smaller on other weeks). Increasingly bad, foul gas and pain in the lower abdominal region (which doctors claimed was due to ovarian cysts). Intense huger, and bizzare food craving cropped up as well. I couldn’t grown my fingernails nicely — they were flaky and brittle, peeling and dry. Heartburn became my regular nemisis, and I ate antiacids like candy.

    By my late 20’s approaching 30 I was experiencing swollen joints, extreme constipation or extremely loose bowels. My face was constaly red and flushed, irritated no matter what I did to care for it. I got hard cystic lumps on my head which had to be removed surgically. When I began seeing blood in my stools I finally started wondering if maybe everything I experienced was related.

    Finally fed up I went to see several doctors.Within a period of six months I was “diagnosed” with Polysistic Ovarian Syndrom (PCOS), ednometriosis, Vitamin D difficiency, Iron difficiency, IBS, chronic sinusitis, exercise induced asthma, chronic migraines, and was labelled pre-diabetic. Doctors felt that my migraines, pain, inflamation and fatigue could all be explained with all these labels.

    I did some reading and soon discovered a link between PCOS and gluten intake. On a whim I cut out all gluten from my diet and within two weeks all my symptoms were gone. Every single one.

    After three months I had a trial binge day, eating any and all of the wheat products I had avoided for three months. Within an hour I had a migraine that didn’t end for three days. My face broke out in horrid acne, and I ached like I had the flu. My cheeks flushed bright red, looking like I’d been slapped.

    That’s all the proof I need.

  113. hillary

    I had been deeply depressed and chronically constipated as far back as I can remember. I remember sitting on the playground, trying to ignore my constant stomach pains and feeling lousy about myself and my body. I was 10.

    I’m 26 now, and I’ve been living gluten-free for 6 months. After my third visit to the hospital with severe colitis (during the first 6 trips to see a doctor prior to these I was sent away with 10 days of Nexium and a diagnosis of “gas” and “acidity”) I finally gave up. I cried and moaned and felt sorry for myself for a long time after that last appointment. I was tired and sad all of the time. I couldn’t think straight. I couldn’t even talk straight anymore! I was mixing up my words and stumbling and stuttering, even though I had always thought of myself as articulate before this. I was losing my balance and getting dizzy every time I stood up. I was constantly in pain in my entire body and only going to the bathroom once in every three weeks.

    I did some research on the internet and decided to give the whole gluten-free thing a try for a month just to see what would happen. Within a week, I felt better than I can ever remember feeling. I could wake up in the morning without dreading the day and stay awake past 9pm! I didn’t need a nap, or coffee and I could think straight and do my work every day well. I became interested in doing things again. I started a garden. I cleaned the entire house. I painted and decorated. And I clearly saw the beautiful man I love who had stuck by me and nursed me through the worst of it and so have spent everyday trying to absorb as much of the beauty around me as possible. There’s too much beauty and love, everything is overflowing. I never saw that before.

    I slip sometimes. I live in South India, where there is an abundance of fresh, local produce for next to nothing a foot from my doorstep. There are flours made from all sorts of different grams and pulses and millets that I’ve really enjoyed experimenting with. Even most of the street food is battered in besan instead of white flour. But I grew up in America, and my comfort food is a big bowl of spaghetti or a slice of pizza or a bottle of ale. Gluten-free is not a “thing” here. No one has heard of it, and so no products cater to it. Wheat is heralded as the healthiest food available. I get angry at the world because I have been denied my favorite foods. Not denied, really, but I must put effort into having them. If I want spaghetti, I have to make my own pasta. And I have to stay away from all of the processed food here because the nutrition labels, when they are there, are inaccurate. Pepsi, for example, lists its ingredients as “Carbonated water, sugar, natural flavoring.” That’s it, no joke. I love to cook, but I hate only being able to eat what I cook. So I get mad at the universe and punish myself (“reward myself” is what I’m thinking at the time) and eat something I shouldn’t, because I tell myself that I am “allowed”. And then I pay the price, dearly, as I ‘m sure all of you know about. Each time it happens, it becomes less worth it. And it’s good sometimes to remember how bad I felt then and how good I feel now. I don’t ever want to forget that, and stop appreciating it.

    I still have problems though, I still have stomach pain and cramps sometimes, I’m back to being constipated and I’m gaining weight, even though I haven’t changed my diet. I’m trying to start cutting other foods out of my diet, to see if there’s something else I’m allergic too. I left dairy a week ago, so we’ll see how that turns out.

    Any suggestions for other problem foods?

    Thanks for giving me a place to get all of this out! And thanks to all of you struggling with the same things for being around and lending your support and your stories. And Shauna, for your story and your blog and for giving us all a place to come together

  114. Erin

    Growing up I was always sick– it was just kind of who I was and I was used to it. Everyone just described me as having a weak immune system, even my doctor. Around the time I turned 20 I began losing lots of weight (to the point that family members accused me of being anorexic). At the time it was blamed on medication I was taking for my chronic anxiety and depression that I’d been dealing with since the age of 12. As I entered my mid-20’s I became more sick on a regular basis. At some point (I don’t even remember when) I stopped having normal bowl movements. I literally had diarrhea for years. I was careful about when I would eat so I would have somewhere I could go to the bathroom. Then I started having heartburn and soon that turned into me going to bed and waking up with heartburn every day. I also had rashes– most often on the backs of my legs or the base of my scalp. What finally pushed me to go to the doctor (because up to this point I just accepted everything and assumed it was something I was causing/being too dramatic about) was my now-husband and I were on vacation and the pain I’d begun to have in my arms and legs got so bad I couldn’t walk. Before that trip I would sometimes feel this achy, bone/nerve kind of pain that would keep me up in the middle of the night in tears, but never seemed to last very long. This time it was days and it was ruining my trip. And my husband was feeling as tired and frustrated by all this as I was. I’d gone to multiple doctors in the past, but all for individual symptoms and never for anything like this. They did all kinds of blood tests and didn’t come up with anything. Finally it was my mom, who happened to hear about the GFCF diet that some of her students with autism were on, who said, “Hey, just try this out and see what happens.” She’d heard that one of they symptoms of Celiac was swelling muscles/joint pain. I cut out gluten for 3 days and instantly knew something was different. Then I had a sandwich and the most intense stomach pains I’d had in a long time. I’ve been totally gluten-free for almost 3 years (and reading this blog the whole time– thank you so much Shauna!!!). I haven’t had the test because there is no way I can live like that for 6 weeks. And I have a feeling that I might have more food allergies because I still have some stomach problems, but overall I feel 100 times better. It’s go back through all that and think, “How could I not have known?! Why didn’t any doctors realize what was wrong with me??” I feel so lucky that I figured out what was going on and I hope others can too.

  115. Jacqueline

    My journey began after having Mono in late 2006. I began to put on weight and could not take it off. I then had Chicken Pox–despite being vaccinated against it–and could not stay well. My “manageable” diarrhea then became constant and I began to have accidents on long walks. I kept a food diary, saw doctors and a nutritionist. Nothing helped. I had fevers most nights and a bright red face. I began to not be able to read the words on the page due to the brain fog, and I was blacking out (although I had a period in 2005 of blacking out a lot–ahhh…hindsight). My joints ached, and I was afraid I had Lupus, MS and/or Fibromilagia.

    July 1, 2008 I gave up wheat because I read an article that said that if you could not lose weight this can help. My body loved me not eating wheat. The aches and diarrhea were the first to go. I did not give up gluten then, for I did not even know about gluten at that point. I did keep pressing my doctor–Why the weight gain? She sent me to an endocrinologist. While there and after noticing a poster with a lot of the symptoms of thyroid disease, I said to her that I did have those symptoms but they went away if I did not eat wheat–was there any connection? She told me, “No. What you need to do is eat 1000 calories a day and work out a minimum of two hours a day if you want to lose weight. You are obviously lying to me about what you are really eating and doing, and you come from a family where there are heavy people. Maybe you should just accept that your genetics prevents you from being a different size.” I left her office heartbroken.

    At Thanksgiving and Christmas of 2008, I went back to baking bread, etc. Gluten-lapalooza. I was dying. So, by January 15, 2009 I gave up wheat once and for all. By February I had found out about gluten and began the process of learning what I needed to do to kick all gluten from my diet. I also read an article in “Living Without” about a man with no GI problems but with blackouts IDENTICAL to my own who was dying until diagnosed with Celiac. Some of us with Celiac can have Parkinson’s like symptoms from gluten plaque in the brain, it turns out. That was the moment I KNEW I would never ever have gluten. My brain was not something I was willing to cheat on ever.

    My doctors now think I most likely do have Celiac given the neuro symptoms, although as Shauna mentioned if you go GF prior to a full-on diagnosis work-up you cannot be properly tested. In my gastro’s practice he considers me to be his most sensitive patient. No medicine. No lip gloss. No makeup. No shampoo. I can tolerate nothing with even a smidge of gluten in it. When I look back over everything, I know I had symptoms in elementary school. I believe I have been gluten intolerant since I was at least 10, but I believe the mono threw the switch and made my body go into full autoimmune response Celiac.

    You know, I think that those of us with weight gain have it really hard because so many doctors told me that the gain was my fault and never considered Celiac or gluten as the cause. I have had more than one doctor tell me now that they never knew that people GAINED weight with Celiac; they only thought of unexplained anorexia as a symptom. I still struggle with healing my body after all the years of damage gluten did to it. The weight has not come off, and I now know that when I have diarrhea I will gain weight as my body goes into full-on “save those calories we are about to starve again” mode. So, even as my mind and body are coming to greater peace, I still find my soul longing to be at one with my body again. That has been the hardest part–to accept that healthy on me might not be back to my normal size ever again. I have had my moments of cursing that I ended up with a disease that makes almost everyone super skinny but I got the fat version. That would be my one pity party in all of this. Yet I know on a deep spiritual level that my self worth and beauty come from the deepest parts in me, not from the surface. Goodness, though, it has been a tough road!

    1. Emma

      Your story mirrors mine, less one integral factor: antibiotics. I discovered my Celiac after a double round of antibiotics to rid a nasty sinus infection caused a systemic candida infection. Hives so bad I cried myself to work on the train, wearing socks and gloves in June. My boyfriend at the time, a doctor, made me swear off all carbs and yeast, which I did for weeks until it cleared up. The first piece of bread I had after the Candida died down left me so sick I could barely move. Went gf then and there. Three months later I had a poece of cauliflower I was told was covered in parmesan turned out was breadcrumbs and more misery. Prior to the candida I’d had varied mysterious symptoms (long periods, loose stool several times daily, terrible eczema and psoriasis especially in warm months) but never clicked thru til the GI misery hit. I will never subject myself to the suffering again, thanks to Shauna and growing awareness and product offerings I can take good care of myself and live a long healthy life!!

      1. Emma

        Oh yes, and obesity, I was obese until age 21. (hence, our stories are similar.) Only gf diet and regular exercise/yoga helped. And not jusy ANY gf diet, I am talking I eat ONLY quinoa brown rice buckwheat teff lean protein no soda very little alcohol (ciroc.. such a vice) and my body weight in fruits and vegetables every week. Don’t get caught up in gf packaged goods, I know its hard, I KNOW.….. but the trick with obesity is just dont tempt yourself, just do not bring it into the house. Cook one of Shauna’s amaaazing cookies or cakes if you need to satisfy that sweet tooth and for the love of all thats good, SHARE :)

  116. Leanne

    Looking back now I am just amazed at how long I suffered from all sorts of symptoms. I have been a lifelong asthmatic. In my early 20s I developed a lactose intolerance, and as I got older I had ovarian cysts, I had irregular, heavy, painful periods, then I got giardia, which was absolutely excruciating. I used to suffer from constant headaches, I was tired and bloated all the time, indeed there was a period of time where I just slept for days at a time I was so exhausted. Finally about 4 years ago I got so sick that it didnt matter what I ate, I was suffering from excruciating stomach pains and yet I just kept putting on weight. I was also suffering from really bad indigestion, so bad I would down a whole packet of antacids and they wouldnt even put a dent in the pain, and I would try to sleep sitting up it was that bad. I went to the doctor who diagnosed GERD and gave me tablets to reduce my acid, but it did nothing to stop the bloating and the cramping, and all it did do was give me the most horrible, foul loose stools (sorry about the TMI).

    Around about then I met my good friend who started working for the same company. He is a coeliac and after researching the condition further, I started to make the connection that maybe my symptoms could be that, so I went to the doctor and asked for the blood test, which subsequently came back negative, although I had been eating GF for a while so the doc referred me to a GE who suggested a gastroscopy but I would have to eat gluten for 6 weeks prior to the test. What a horrible and traumatic time that was, I was so sick with horrible stomach pains, loose stools, exhaustion, headaches, and the most horrifically huge bloated stomach (people would ask me when my baby was due). The day I went in for the Gastroscopy I was so excited because it meant I could stop eating all the stuff that made me sick.

    After going through all that agony, in a way I was gutted when the diagnosis came back negative. The GE suggested that I had a gluten & dairy sensitivity and to follow a GF diet, which is what I have been doing ever since.

    It’s hard, because sometimes you are made to feel like it’s all in your head, or that it’s just a fad. I dont really care, because at the end of the day going GF changed my life and I am not going back to being sick all the time.

    Finding your blog was an absolute godsend, and I applaud everything you are doing to raise awareness. The more people who are educated the better off we will be.

    Love your work! :)

  117. Melanie

    After years of trying to get pregnant, I tried a strict candida diet to “reboot” my system. The diet was to be for 90 days, but after 50 days I found out I was pregnant. Instead of finishing the diet, I slowly tapered off and eventually gave in to that bread I so badly craved. I was almost soon hospitalized and in intense pain…they kept me on an epidural, tried unsuccessfully to operate on a cantaloupe sized fibroid, and told I would be lucky if my baby made it to 25 weeks. A few weeks later I went home…still unable to lift my own head (I’d been on a hospital diet, after all!) and began acupuncture. My acupuncturist immediately said to give up gluten.….and what a difference! I still had a difficult pregnancy, but I was up, moving, and the baby made it to 34 weeks, against all odds. A few times since his birth I’ve started to buy the lie that it must be all in my head and given in to the siren call of the bagel…and ALWAYS PAID THE PRICE. Now I actually feel a physical revulsion when holding a gluten item, sometimes even when looking at it. It is difficult with my husband and children eating some gluten and sometimes having nothing around for myself that I don’t need to spend an hour cooking, but I’m learning to just say no (or, in Shauna language, just say Yes, eh?) and do what is best for me. I’d like to be able to play with my kids, not just sit there and watch!

  118. Lois Parker

    I had to give up work, I was so ill. I ran my own consultancy business.
    My joints were so weak I had to squeeze toothpaste out of a tube by leaning my forearm on it.
    I had appalling periods for three weeks out of every four — very miserable, lots of pain, heavy bleeding. I was offered a hysterectomy but didn’t accept as that wouldn’t have addressed the mood.
    Black circles under eyes — now I can see them in photos of me when I was two years old. I used to wear dark navy eye shadow to try to get the eyelid darker than the eyebag.
    Only wore trousers without proper waistbands an elasticated fabric as never knew what size I would be.
    Ran my life by timing my first food of the day so I could have an hour to go to the toilet afterwards, or else pain and panic all day.
    Always got food poisoning when ate a salad at a restaurant.
    Always got food poisoning when travelled ( with gut so bad couldn’t kill off the bugs)
    Migraines frequently
    Had very restricted diet without realising I was doing it. I thought I was just eating sensibly.
    Gut pain. My sister, a massage therapist (and artist) used to want to massage my belly but I would never let her.
    Couldn’t sleep unless had a very comfortable mattress. Thought I was the princess and the pea.
    Fell asleep if I sat down — on the sofa, as a passenger in the car (always!)
    Serious respiratory infections if I spent time with other people. When I visited family I had to leave on day three or I would be too ill to drive home. Thick chest, blocked sinuses, rope-like mucus which sometimes I had to pull out with my fingers (I know, Yuk!). If I didn’t take high dose antibiotics fast on first symptoms I would be out of action for two weeks and this was about ten times a year.
    Leg cramps — always took calcium and later quinine, and that helped, but painful and made driving feel dangerous at times if foot spasmed when using pedals.
    Felt like trying to think with my head in a bucket of goo — now I recognise the brain fog if I have accidental contamination with even the tiniest amount of gluten (and I cant eat oats either)
    Probably more, but feel so well know I keep forgetting how lousy I felt. I had started planning the point at which I wasn’t prepared to keep on living if things just kept getting worse.

    Inspiring work, thanks.
    I am about to get my own flour blend made here in the UK and busy writing the cookbook for it. It works better than anyone else’s, and I started as I was so horrified by what was available. Mission is to help everyone else eat as well as I do.

  119. Fiona

    Stomach problems since early 20’s; skin rashes that didn’t respond to classic eczema treatment, chronic, inexplicable sinusitis and terrible migraine, zero energy, sleeplessness .… took moving to another country and seeing a doctor that didn’t just treat symptoms but looked for the root cause to get a diagnosis after 18 years. Life is so much better now.

  120. Emily

    The first symptoms started creeping in during my senior year of high school, when I was 17. I played golf for my school, and halfway through the spring season my chest began to hurt so much that I could barely finish the season. The pain was constant, dull, spread across my entire chest, and it grew worse with any exertion. My doctor diagnosed it as costochondritis, inflammation of the cartilage between the ribs. By June, I was in such pain that I almost did not go to my graduation.

    The pain faded and I had a year or so without any problems. Then, during the fall of my sophomore year of college, the costochondritis pain came back and was even more severe. I was playing golf then too, and had to stop. I was also incredibly fatigued, generally weak, and found myself in the bathroom almost immediately after meals. I started needing lots of downtime to get through the day, often going back to my dorm room between classes to lay down. On school breaks throughout the year, I visited various doctors at home, none of whom paid attention to all of my symptoms. The costochondritis diagnosis was pointlessly affirmed again and again, and I was prescribed massive amounts of NSAIDs to manage the pain. One fancy diagnostician told me it was all in my head. At home that summer, I grew worse and worse: on top of the other symptoms, I started having daily headaches, brain fog, and gut-wrenching stomach cramps after meals. The pain in my chest got so bad that I could not even lift a kettle, and by August I was essentially bedridden.

    I kept seeing doctors, looking for answers. They ran lots of blood tests, ruling out Lupus, cancer, etc. Finally, I see a wonderful, patient internist who reviewed my entire medical history. She suggested running the Celiac blood tests and doing an endoscopy. Everything came back negative, but because we had seemingly exhausted so many other avenues, she suggested gluten sensitivity as a possibility and that I try going gluten free. Within days, I sprang back to life. That was three years ago, and I haven’t looked back.

  121. Melly

    I have just read every comment and I feel pleased for you all that you’ve found your cures.
    I’m not sure if I have an intolerance or celiac disease (stupid word disease!).

    I do however have terribly yellowed teeth (I’m a non smoker and don’t drink coffee), my belly always seems bloated, my hair is limp, my hands look like they belong to my nana (I’m 34), I get teary for no reason, I have never had a regular period, I always get severe gastro at least once it twice a year, I’m tired all the time (I blame having 4 kids) and I’m so moody and can get so angry so quickly.

    Does this sound familiar to anyone? :)

    1. Yc Le Pew

      Yes– give it 3 weeks and you will be amazed at the differance you feel in yourself! At this point it can’t hurt and I’m sure you will be happily, healthily surprised.

  122. Isabelle

    First, forgive my english, I’m French, but still coeliac ;)

    I had a masive intestinal infection 3 years ago, which made me lost a lot of weight really fast. nearly 1kg/day.
    I stopped eating, and I didn’t come back to it after more than 10 days. I ate seldomly; with dreadful pain in my stomach. I drank a lot because it helped me sleep.

    My luck in here is that my brother is a doctor. So after a month of pain, and of weight loosing and not eating nearly, I went to him and asked. We first thought of a misplaced pregnancy, but 2 weeks later he got me an appointment with a gastroenterologue. They first thought I had Krone, but “hopfully” the tests revealed a gluten intolerence, which blood examination confirmed. I’d never been sick lick that before, and even after my strict diet, I was in pain for nearly a year to recover.

    I seldomlu have headache now, I know when I eat gluten, because in 2 hours I can’t move. I learned how to cook (what i seldomly did before) and my husband is a great help, even if I still, sometime, cry over odours of pizza, or pancakes, or just the fact of being different and not able to eat the same things that my friends do.

    I still pray that someday soon they’ll find a cure, because there are some things I’m dying to eat again, like a hot croissant fresh from the bakery in the morning. But untill now, despite the fact that in French it is difficult to find good product, or even people knowing what we are talking about, I learnt how to cook.

        1. Serena

          Isabelle,

          If you’re in Paris, I can tell you where to go and what is safe to buy. You’re right, there’s not that much selection here!

  123. Lydia

    have you read the blood type diet book? well i did and my husband and i are both Os. the book states that if you are an O blood type you tend to have gluten allergies. we decided to try the south beach diet which in the first phase cuts out carbs (translation to us, gluten products). it worked! the weight dropped off, no gas or bloating and i had way more energy. we eventually caved back to a stress diet of pizza, pasta and bread. we have two children now and i am thinking that i need to just bite the bullet and go gluten free. though neither of them exhibit any signs at all. because my husband and i are both Os they are too and if the book is correct, they could struggle with gluten as well. what do you think of his book? have you noticed any correlation with the people you have seen diagnosed in regards to blood type? or is it pretty universal in its affects on all blood types? just wondering what you thought of these ideas. thank you so much for your blog shuana. i find your story inspiring.

    1. Mary Ann Reynolds

      I am a Type O. I was tested twice and found sensitive to wheat, not gluten. I also had candida, which Type Os are more prone to. I also saw strong parallels with the Type O diet and the foods I was sensitive to. I’d love to have more data on this. Thanks so much for sharing!

  124. Sherry

    ADHD and wheat intolerance can have some of the same symptoms. My son was misdiagnosed with ADHD. We did an elimination diet of gluten. Now he no longer takes ADHD meds or allergy meds. Dark circles under his eyes are minimized.

    Could the genetically modified wheat in the U.S. be one of the culprits in the increase in celiac disease and wheat intolerance?

    1. shauna

      What I have been reading is that high gluten wheat is privileged in this country — we like our stiff grocery store bread — and that this increase in gluten in traditional foods might play a part.

      1. Serena

        I agree — in the last 150 years people have been increasingly consuming more wheat as opposed to a variety of grains. It’s easier to bake and cook with, isn’t it?! The more you expose yourself to something, the greater the risk of triggering an immune response. I mean, just look at the modern Italian diet (laden with gluten) and then the corresponding numbers of Celiac patients. It’s SO easy to travel in Italy because just about everyone and their grandmother knows about Celiac disease. If we (the world) slows down with the wheat obsession, and revert back to “ancient” grains, I wonder if the cases would drop?

        ps. There was a Swedish study that showed that baby formula in the late ‘70s contained hydrolyzed wheat protein and that triggered it for a large number of children born at that time.

      2. Kiri

        I doubt that this is the case. These ailments are genetic, and the only reason non-celiac gluten intolerance isn’t picked up by normal celiac testing is that it doesn’t affect the intestines as much as it does other organs of the body. People with non-celiac gluten intolerance typically have the same genetic markers as celiacs, or so I’ve read.

        I would, however, be willing to bet hard cash that our high-gluten wheat is what is causing all the gluten intolerant people to notice their symptoms and get tested. In a way, this could be a good thing–they’d go on feeling miserable forever without ever finding out if it weren’t for that.

  125. Simone

    Thanks all for sharing your stories and thanks Shauna for bringing us all together. My diagnosis with celiacs was 12 months ago and was sort of by accident. I was certain that the constant pain I had in my side was a reproductive issue, having irregular periodds and not being able to fall pregnant being two reasons for this thinking. But after everything reproductive was checked and cleared my Dr recommended an endoscopy and it and a blood test resulted in a diagnosis of celiacs. I actually said to the doctor, “But I’m to fat to be celiac” Straight up I was sad about all the things I couldn’t eat and I am still sad eating out sometimes because what I make at home has less boundaries but after being gluten free for a year I can’t believe what I thought was normal. I no longer suffer headaches that last for days, I no longer get mouth ulcers, my hair grows longer before falling out, I have regular periods and a lot less pain with them, I have a chin instead of bloat where a chin should be, I no longer alternate between constipation and the runs, I have clearer thought processes and need much, much less sleep and I have lost weight. All the above while not severe symptoms were my ‘normal’ I thought that was just how things were for me. I like my gluten free normal a lot better and whilst I really miss pastry, life without it is really that much better.

  126. Genevieve

    Here’s my question to all of you diagnosed,
    I am exhibiting almost all of the symptoms listed in the posts above. Recently had a colonoscopy and upper endoscopy (same day) to all come back with “normal” pathology
    results…GI says he wants to call it IBS and prescribe bentyl.…do I still insist on a blood panel?
    My GI says that the pathology eliminates the possibility of Celiac.

    Any prior experience shared would be appreciated!

    1. MJ

      When your doctor did the colonoscopy, did he take a biopsy and test for Celiac? If he did, and it came back negative, then there’s probably not much use in asking for the blood test, as the boipsy is considered to be the more accurate test.

      However, you can test negative for Celiac, and still have gluten intolerance. That was my experience. Started having IBS-like symptoms. Tested negative for Celiac via both the blood test and biopsy in March 2009. The colonoscopy showed inflmmation in the colon, and my Gastro told me I had Crohn’s disease (a form of inflammatory bowel disease).

      He put me on medication, but it did me no good — the severity and frequency of my symptoms continued to increase. In March 2010 I did an elimination diet with a naturopathic doctor. I had a violent reaction when I tested gluten. So I stopped eating gluten-containing products. I gradually started feeling better. Had a follow-up colonoscopy in July 2010, and the inflammation in my colon had completely healed. (Unfortunately my Gastro refused to believe the healing had anything to do with taking gluten out of my diet — he’s convinced it was a coincidence). It took about 9 months for my gut to heal, but it ultimately did.

      So even if you’ve tested negative for Celiac, gluten could still be the root cause of your symptoms.

    2. shauna

      From what I am reading lately, you just went through the test for gluten sensitivity. If you have all the symptoms, but the traditional tests for celiac come back negative, it’s gluten sensitivity. As your GI to look up the work at the University of Maryland and follow through with that.

    3. Doug

      This is an interesting situation.. because the pathology report isn’t directly confirmatory of celiac disease.. It doesn’t come back as “Celiac” disease… It comes back as blunted villi or something describing the the state of the villi… If they look short and stubby then that’s usually confirmatory of Celiac disease.. I think you need the blood test too! When I look back of the years I can tell there were times when my symptoms would ebb and flow, which I think are times when the gut healed and other times when it was inflamed, I have no way of knowing for sure… Are you still eating gluten? If you are still eating gluten then I would probably ask for the blood test and I would even consider genetic testing cause the blood test is still a bit iffy…I wouldn’t take the results of this biopsy as confirmatory that gluten isn’t still an issue.

    4. Rebecca

      Genevieve — I actually went through genetic testing for Celiac and do not carry the gene. However, I am allergic to wheat and exhibited so many of the systems throughout my lifetime. I have been GF for about 5 months and while I am not yet fully healed I no longer suffer from debilitating muscle and joint pain. My brain fog has cleared and I have almost as much energy as I did in my early 30’s (I am 55 now). I am slowly weaning myself off the toxic medications I have been prescribed for all of the various auto-immune disorders I have been diagnosed with.

      Remember, what the doctors call “normal” is a mid-range of results gathered from 1,000’s of results. If our society as a whole is ill, then “normal” is not a healthy place to be. Follow the GF diet and judge your own results. But be sure to give it enough time to work. Our bodies didn’t get this out-of-balance overnight so it may take some time to start healing. Best of luck.

  127. Amy

    My daughter was diagnosed with celiac at 10 months. She began vomiting almost daily out of the blue when she was 9 months old. In between, she would seem fine. At first we thought she was just constipated because she always had what we call “pebble poop”. After trying juices and miralax resulting in better BMs but still vomiting we took her to her pediatrician. She was also becoming more lethargic with each episode of vomiting. It was then we realized that she had not gained any weight and in fact had gone from the 90th percentile weight at 6 months (limited diet aside from formula as we were just starting to introduce solids) to the 10th percentile. They did an barium swallow which didn’t show a whole lot. Luckily, my husband and I are both physicians and happened to know the best pediatric gastroenterologist in the city. He got us in the next day. Two days later, she was scoped and biopsied. Just by the appearance of her gut looking at it with the naked eye, he strongly suspected celiac. The biopsy and bloodwork came back positive. Within a week of cutting out gluten, she stopped throwing up. Within one month, she was back up to the 75th percentile weight.

    Now, she is turning three next week and better than ever. She will never know any different regarding her diet. Although it was a stressful, horrible month when she first became sick, I’m thankful in a way that she presented with the symptoms that she did. It’s hard to ignore a infant who vomits everyday and because her presentation was so extreme, she was quickly diagnosed and won’t have to live a myriad of vague symptoms that might just be written off.

  128. Donna Vieira

    On the 12th of September 2010 I was watching a mainstream morning TV program, and a guest on the show (I really don’t remember the show or the celeb) was touting the benefits of going gluten free for 21 days. Something in me said, “Hey, I can do anything for 21 days!” and jumped in. I remember going to the mega mart and buying some GF flours, came home and made some bread. What resulted was only somewhat edible, but I persisted. Over the next few days, my continually drippy nose was less stuffy, and the clouds of depression that had hung over me started to part… I could see “sunshine,” and the skies began to return to a blazing blue again. Day 12: I just started tossing out all the gluten in my house, “Oh, this is old anyway, to the pasta…and then to the wheat flours, until at that day’s end there was no gluten in my house! I Felt GOOD. I felt ALIVE.

    I prepared my self for a battle with my nearly 80 year old Mom, who makes the best Mac ‘n Cheese and Southern cornbread dressing on the planet. “Mom, I don’t eat wheat anymore, so don’t be upset that I have to turn down these lovely creations”. To my surprise, her response, “Well, you did have an allergy to it when you were little!” She had forgotten to tell me, and felt guilty for quite awhile… she has gotten over it now… thankfully.

    The benefits to me are very real… I can sell my “stock” in kleenex, cause my nose is clear all day, expect when I get “glutened” accidentally. My depression is GONE …my rosacea is going AWAY (I have read in some literature of a link with gut problems and rosacea, and now that makes sense to me.) I don’t cheat, I just change and move forward … I found your blog, along with many others, that have been life changing. New chapter, new horizons, new energy, what a difference leaving gluten behind has made in my life. Bless you, Shauna for your courage and your tenacity to spread this knowledge to everyone!

  129. Julie Seifert

    I don’t have celiac. I had them test me twice. I do however have gluten sensitivity. It is hard for people to believe what they consider to be imaginary illness since you can’t test for it. Only people who saw how sick I was before I stopped eating gluten really can believe it. I had excruciating stomach pains, vomiting, all manner of bathroom issues, tired all the time I would fall asleep in a room full of people after eating wheat, once while driving my car after eating a dough nut I fell asleep and ran off the road. You would have thought I had narcolepsy. I had a myriad of vitamin deficiencies; I would loose weight for no reason even though I was ravenously hungry and would eat 4000 or so calories sometimes. I was a double 00 and 5’10 imagine how that looks? (And no this is not a disease you want to loose weight. I’m kind of sick of hearing how that part made me LUCKY?! WTF!) Many thought I was anorexic or bulimic or both. Now off of wheat no more spending evenings on the couch curled up in a ball of pain, no more running to the bathroom 100 times a day, I have ENGERY! Holy crap I had forgotten what that felt like. I started exercising and gained 10+ lbs now I look healthy. People can say it’s in my head I don’t need anyone else to believe it. I’m never going back to that again.

  130. Rachel Ann

    I had no idea what celiac or even gluten was until I decided to do a master cleanse which required cutting out gluten for 2 weeks. I’ve been sick or feeling unwell for the better part of 30 years, but chalked it up to stress and just lived with it. During the cleanse, I felt amazing, but attributed that to the cleanse. Eating GF foods made me fill full and satiated like no other food had before. Of course, after the cleanse I went back to eating whatever and feeling bad.

    My symptoms started getting worse. What was tummy aches, bloating, and headaches since high school turned into severe dystension, severe irregularity, severe fatigue, worse headaches, and an increased appetite that was so bad I would literally shake from hunger less than an hour after eating a full meal. Oh yeah, and I was losing weight. My doctor diagnosed me with IBS, but advised me to cut out gluten immediately. She took my blood too, but told me the test was negative and that I was “fine.”

    I cut out gluten and felt great, but I didn’t take it 100% strictly seriously because I was “fine.” Two months later, I was so sick that I ended back up at the Dr. Turns out, I was given an outdated unreliable blood test. I was referred to a GI with but my primary care Dr. was careful to tell me that he didn’t “buy” the whole gluten thing– thankfully he sent me anyway. The GI put me on a 6-week gluten challenge and scheduled an upper endoscopy and colonoscopy and the proper blood panel. My original symptoms returned within a few days. My primary doc ate his words at my follow-up, telling me that gluten was a trigger and that I must be gluten free after the procedures.

    My endoscopy and colonoscopy are tomorrow morning, and honestly, I don’t even care about the result because even if they tell me that I am “fine,” I will be GF (happily) for the indefinite future. I’m excited to put all this medical mess behind me and start living! Wish me luck!

    p.s. My diet today consists of gatorade, 7up, and jello. Jealous??

  131. Maggi

    Well, we should have seen this years ago… (sorry, this turned out longer than I thought it would)

    I was always a skinny kid with ‘tummy issues’ that were always dismissed. And even I did my best to dismiss them too. When I was 22, my ‘tummy issues’ had a new name: Irritable Bowel Disease. At the time — no treatment, no cure. Great. I was finally pregnant at age 32. The whole pregnancy I was severely constipated, which in and of itself isn’t unusual unless the laxatives don’t work. I felt like I was pooping glass (I’m sorry — there was no better way to describe it) every time I went. I didn’t feel like eating and I lost a ton of weight while pregnant instead of gaining. Miraculously, I had a healthy child despite this. Fast forward — I’m a new mother and always tired. Nothing new. But my IBS is on over drive. I feel awful and my gut hurt more than ever. Except now, there are new me4ds on the market. So, we try Zelnorm, Bentyl and a few others. Nothing worked. Even worse, I had a mixture of constipation and diarrhea — sometimes in the same bowel movement. It was odd.

    Finally, I reached the breaking point. I was so tired all of the time. I couldn’t function like my usual self. I stole time each day in my office for a nap, even though I was sleeping 10 hours a night. My work was suffering because I felt like I couldn’t remember even the most mundane tasks and I couldn’t concentrate. I was ready to drop out of my graduate studies. So, I went back to the doctor. I told him that SOMETHING has to be found. We went through my symptoms one more time. He suggested we try to find what food is triggering my IBS. We eliminated raw fruits and veggies, soy, dairy, and then eggs.

    Then — oh oh.… a new problem. I had sever pain in my gall bladder. Ultrasound showed no stones. But the pain is clearly in my gallbladder area, positive Murphy sign, so a HIDA scan was ordered. GB function at 10%. The surgeon wasn’t fully convinced that it was my gall bladder, but he didn’t know what else to suggest. I was in absolute agony. At this point, I was on the egg-free trial and at nearing the end of that 12 week trial. Surgery was scheduled, and my gall bladder removed. Sure enough, no stones but pathology came back saying it was inflamed and scarred. But, the pain in my gut still persisted. I was at my wits end.

    I broke down in my doctor’s office and cried. I just wanted to be well. I just wanted to enjoy my life again. He suggested one more food trial: wheat. He said it was a long shot, but we had nothing to lose.

    Guess what? I felt better. Not completely, but there was improvement. Then I started Googling and learned about Celiac disease. I went back after the 12 week trial and asked for the IgA blood test. It came back elevated. I stopped eating gluten. I improved greatly. No, better than greatly. Within a month my ‘tummy issues’ were gone. I couldn’t remember what it was like NOT to have a tummy ache! It felt marvelous. My stools gradually went back to ‘normal’ My energy increased and now I sleep a solid 7 hours and have energy for not only my work and studies but my kid and all of his extracurricular activities.

    You would think this is the end of the story — but one day, in a fit of self-pity I glutened myself. Oh no, not accidentally. I was feeling sorry for myself and I actually convinced myself that maybe, just MAYBE this gluten thing was all in my head (as I was told by a gastroenterologist when he heard that I hadn’t had a biopsy done of my intestines) so I ate a nice, big chocolate cookie from my local bakery. And it tasted phenomenal. And about 3 hours later, I was in more pain than I had ever remembered before when I was eating gluten full-time. It took 4 days to get back to my (new) old self again. That solidified it for me. Gluten Intolerance/Celiac IS real and I DO have it (which ever one) and I never, ever want to feel like that again.

  132. Letty

    I’ve had minor symptoms for as long as I can remember; preferring to nap and read books rather than play outside with my siblings and friends, anxiety, asthma, stomach problems, TMJ, RLS, and a slew of other issues. Due to my incredibly vague symptoms that didn’t seem to go together, my doctors tried to fix my symptoms without looking for a cause (beyond checking and rechecking my thyroid and lyme panels). Finally, after a doctor prescribed me the wrong (really wrong) dose to treat my supposed Fibromyalgia, I lost faith in modern medicine and found a naturopath. She was amazing! Within two months she had diagnosed me with an allergy to wheat and put me on a diet to reflect that. I immediately felt better. I was finally able to concentrate, to get through a day without taking advil for my aches and pains, to sleep restfully, and to eat without getting nauseous. It was a miracle! It’s been 6 years and I haven’t looked back. After getting my family on board with my new diet, two of my siblings tried and both felt better also (my brother had migraines and depression and my sister lupus symptoms and a rash). It’s been great to know that my change has helped other people to also feel better. Most of our family functions now are completely gluten free. It’s been a long road but well worth finding the answer!

  133. katie

    this is fascinating to read everyone’s very unique experiences! I have an intolerance to gluten. When I found out, with the help of my doctor, so many things made sense about my health. And after eliminating it, so many things cleared up. My skin issues (acne and eczema) vanished, all of my stomach pains went away, I finally put on the weight I couldn’t put back on to reach my healthy weight, my periods became regular again, and all signs of anxiety and slight depression went away. I have never been happier or healthier since saying ‘yes’ to healthy and natural gluten free foods.

  134. Serena

    I know that there are already so many comments, but I would like to share one little tidbit. When I look at my husband’s pictures throughout his life (he was diagnosed with Celiac disease at age 19) it makes my heart sink. He was an adorable baby and small child, but by the time he hit age 9 or 10 he became shriveled and scrawny. His body had withered away so much, it doesn’t even look like his body could support the weight of his head. The alarming thing is that he stayed that way (and remained at a height of 5’5″) until he was diagnosed. After two months he shot up to 6’1″ and is now a healthy weight. When he has even the slightest contamination, his body rejects it exactly 3 hours after consuming the food (it’s like clockwork), and he’s locked away in the bathroom all night.

    Can anyone help with this problem though: even proper gluten free food (we have no gluten in the house) will still cause him to have diarrhea. This happens almost 3–4 times per week and doctors that we’ve consulted don’t really know what to do. I don’t think it’s an allergy to another food (ie. corn, rice, etc.) because even a “meat and potatoes” kind of meal triggers it. Thanks in advance.

    1. Janet NZ

      Could he be sensitive to the ‘nightshade’ vegetables? Potatoes, tomatoes, capsicum — including chillies…
      It’s just a thought, but it seems I am too… (sweet potatoes, pumpkin cause me no problems at all)

    2. Traci

      Along with “nightshade” vegetables including peppers, try excluding potatoes AND potato starch. Many gluten-free foods contain potato starch. This was the culprit for me.

  135. Kearstin

    I first starting noticing that something was wrong about 8 months ago. I was going to my Primary care doctor with symptoms of extreme bloating (looked like I was 8months pregnant), upset/unsettled stomach and being pretty tired. She refereed me to a G.I. doctor after trying an array of OTC medicines and giving up diary. Then my G.I. doctor performed blood tests, lactose intolerance tests, endoscopy procedures and even antibiotics. None of these tests, procedures and medications helped any of my symptoms nor did they show anything abnormal. It wasn’t until my chiropractor noticed how terrible I looked and was felt that he suggested me giving up gluten. At the time I was on the antibiotics which I had to take for two weeks, so I didn’t want to start something knew since I wouldn’t know what was helping. I realized that these tests after tests keep telling me that there isn’t anything wrong anatomically. So I just decided one day to give up gluten. Within one day I felt so much better. Then one week later I was back at my chiro for my monthly visits and he noticed that something had changed in me. I was acting and feeling better and he could see. So he was shocked to find out that what he suggested was what I needed this whole time! I had a gluten intolerance the whole time and had no idea! No wonder i was feeling sick each time I ate! It is in a lot of things!!!

    It has been almost 3 months since I gave up gluten and I’ve never felt better! I finally feel like I have my life back! Of course I have the occasional bad day when I eat something with gluten unexpectedly but I like having a few bad days then only have a few good days each month!

  136. Meghan

    I started noticing weird symptoms about a year before my wedding (about june 2008), but thought it was my milk allergy flaring up because I was not being as careful as I should be. However, these symptoms were different than my milk reaction (usually a headache and stomach ache). I was beginning to feel cloudy and dull in my mind, I kept being asked if I had rosacea, and I was having horrible “outputs”. I specifically remember on my honeymoon being so sick and miserable (looking back it was the cake. ugh!) and not being able to eat anything. I lost 5 pounds on my honeymoon just because I couldn’t eat anything except bubble tea.

    Funny thing, though. I made so much pasta my first year of marriage, and I never made the connection. My dad (a sharp pediatrician) says it’s the way some people cope with celiac/sensitivity; they keep eating the stuff that’s harming them because they’re just hoping the next time they’ll feel better. Did I do this unconsciously? I sure did.

    My mom laid the bombshell on me two april’s ago. She figured it out by watching me. A few months before that I had gotten a new job and I couldn’t stay awake, felt dull and foggy, and couldn’t eat without feeling sick. I also began to get migraines, and slept all the time (as in, till 11am, go to work, take mini-naps there, come back at 5, go to sleep, wake up at 7, make dinner, go back to bed at 11. I couldn’t stay awake for more than a couple hours. It was horrible.

    I feel so much better being gluten-free. I don’t have aches and pains all the time, I can stay awake and enjoy life again, and the cooking transition hasn’t been too difficult (thanks to Whole Foods.)

  137. Ann

    I was diagnosed with a wheat allergy 10 years ago — I had breathing problems and lived in an area that produced a lot of the stuff. I discovered I was allergic to both wheat dust and the wheat products. Stopping to eat wheat gave me the ability to breathe without problems and I discovered when I cheated and ate wheat that it not only affected my breathing but also my immune system. I rarely get sick if I stick to a gluten-free diet but if I start adding little bits and pieces here and there I will get all kinds of illnesses. I have some of the other symptoms of celiac/gluten intolerance but having been gluten-free for so long I feel that as long as I stay gluten-free I don’t really need to know. Over the years my sister and nephew have discovered that gluten greatly affects them and my mother recently went gluten-free for Lent and felt so much better and had a lot more energy. I’m just glad that there is a lot more support, along with better products and recipes, than when I went gluten-free back in 2000. Keep up the great work!

  138. Tami

    My symptoms were all over the place. One day, I’d have trouble feeling my hands and feet because of the numbness and/or tingling. My feet consistently swelled, joints ached, headaches, etc. However, the two most severe symptoms were 1) debilitating exhaustion and 2) never-ending stomach/bathroom issues.

    I discovered on my own, through research. Oddly enough, yours was the first blog I came across, yours the first story I read about Celiac. I began to insist that I be tested, only to be met with rolling eyes from doctors who clearly didn’t buy that this is a real disease or a real issue. Finally, after four years, I found someone who would listen. Dr. Allessio Fasano at the University of Maryland center for celiac research was absolutely wonderful. Over the course of a few weeks, blood testing and other tests, I finally was given my diagnosis. (I wasn’t at all surprised)

  139. Alison

    For me, the doctors couldn’t figure it out. I was tested for SO MANY THINGS. They were pretty convinced that i had Lupus, or Hashimoto’s Disease. I was getting so sick that my muscles and my joints were giving way. My legs were giving out on me constantly. My doctor was to the point that he was going to hospitalize me so that we would have active research to figure out what was destroying my body. I had had a CAT scan done and all they found was a upper sinus infection. My husband was on the phone with my doctor talking about the results and asked the doc if he thought the drywall dust would have caused the infection. My doctor then asked how long we had been working with drywall (months) and told us that drywall is primarily gluten. To then remove me from the environment immediately as well as all gluten from my diet. It took me a while to regain strength in my legs, but I started to notice a difference on the third day of being gluten free!! I was then diagnosed with Celiac Disease.

    I have never respected food the way I do now!

  140. Jennifer Iannolo

    Wow, Shauna, it’s eerie reading this. My journey with fibromyalgia has been so similar, and eliminating gluten has definitely helped. I wish going gluten-free made it all go away, but I’ll take anything I can get at this point. Thank you for sharing your story, and offering a glimmer of hope to people whose doctors simply will not listen. In Europe, celiac is one of the first things they look for, but here we are stuck in a medical rut.

  141. Lydia

    I am simply astounded at how many people have replied and I look forward to reading them all as I have time. I got through 3 today.
    I am 34 and have been gluten free since Thanksgiving day 2010. I don’t know how long I’ve had symptoms because the more time passes the more health issues go away. I went gluten free in an attempt to help clear up whatever I had that was crippling me. We couldn’t figure out if it was rheumatoid arthritis, fibromyalgia or multiple sclerosis. I had lots of borderline symptoms of hypothyroidism, diabetes, migraines, severe sinusitus, was scheduled to have my gallbladder checked out and my liver function plummeted. By the way I also began to gain weight after our 4th child was born and it just kept increasing until I ended up 65lbs overweight while eating an almost entirely natural diet!! I have now lost 33.5 lbs can walk and exercise without pain, have a clear diabetes diagnosis which is under control, don’t require 10–12 hours of sleep just to function, am beginning to remember everything, can wear my wedding rings again, no longer deal with a distended belly, constipation or diarhea, have normal menstrual cycles, my complexion is amazing, my eyes are clear, dark circles under eyes are almost gone, depression has lifted, urinary tract infections have cleared, my hair is shiny, curly and beautiful with silvery streaks that look cool, my nails are strong and I’m adding to this list every week! BTW I did have bloodwork done and it came back negative. My doctors tried but couldn’t find the proof so they just told me to keep the gluten out if it makes me sick.

    Despite all of these wonderful things I’ve shared they are no where near the best part at all!

    THE BEST PART IS THAT MY LITTLE GIRL IS BETTER!

    When I went gluten free we had a family trial to see if the children were affected as well since gluten sensitivity and celiac are inherited. Our 9 year old daughter is no longer having anxiety attacks, stomach aches, irradic heartbeats, nerve spasms or chronic constipation AND has gained 7 pounds!! She is a lot less tired, very happy and runs and plays a lot more! Her heart was a great worry for us and I’m glad we found this out before she had to go to a pediatric cardiologist.

    We are now investigating our 5 year old son’s skin rash which flared up in January and hasn’t cleared up. We have pinned the reactions down to bananas and gluten. He gets welts from head to toe and when he eats gluten they have a purple hue. Results from his bloodwork come in today.

    I recommend that anyone having symptoms or feeling better share this with their friends and family. If I had heard about this earlier I definitely would have eliminated much suffering in my daughter and myself.

  142. Jenn C.

    I had felt weak and sickly for years, catching every cold, flu or bug that came along. My stomach hurt and I constantly had ‘tummy’ issues (so common w/ celiac so i’ll spare you grisly details). My nose dripped and I was conjested, even when “well”. I struggled with infertility and lost two pregnancies. My skin was cracking open and bleeding. I was depressed and anxious but always too tired to do anything about it. I struggled with weight and general well-being. After taking test after test, being injected with radioactive dye and xrayed multiple times, being poked and prodded by many doctors, enlisting 4 specialists and taking over 6 medications daily, I decided (not my doctors, ME) my issues could all be related. I found out it was as simple as not ingesting gluten again, forever, and is the reason I feel so healthy and amazing now. I feel reborn! And being diagnosed resulted in me also feeling validated for advocating my own health, and empowered to continue listening to my body!

  143. April

    Reading these stories just reaffirms everything I already know. So many of them are similar. The saddest part is that most of us have to “diagnose” our selves. Fortunately, some doctors are educating themselves about celiac and gluten intolerance. It just goes to show, there is no substitute for a second opinion. if you are not getting the results you need, don’y be afraid to switch doctors until you find one that helps! Doctors only know what they’ve been taught. They are taught to diagnose and write prescriptions.
    And for those of you that cheat, please reconsider! Dr Thomas O’Bryan has studies that support the statistic that you are 6 TIMES more likely to die young if you cheat once a month! Is it worth it?

  144. Diane

    Wow, so many stories! I just want to hug everyone!
    A few years ago I started having some aches and pains in my joints… nothing major at first — it seemed a little like a bad case of carpal tunnel, and then it spread. And spread. And spread. From one wrist to both, to my fingers, knuckles, elbows, hips, knees and ankles. I couldn’t open a jar, couldn’t lift a frying pan without both hands, had a hard time lifting up my kids and I had a hard time writing and typing… my walking got slow, and I had difficulties with going up and down stairs.
    I had just turned 38, and have an Aunt with Rheumatoid Arthritis, so I was really worried about what was going on.
    I kept waiting for it to clear-up and when it didn’t I went to my doc — he put me on NSAIDs and said he thought it wasn’t anything to worry about just yet — and that we would do some more testing… Well, I didn’t want to be on those kinds of drugs indefinitely, so I went to a Naturopath recommended by some friends and was put on an elimination diet — it took MONTHS!! and was really hard at times, but I felt better and was able to stop taking my meds. We finally narrowed the culprit down to wheat (and nightshades) as being my Achilles heal(s). I been living wheat free, (and mostly gluten free) for about 3 years and feel so much better.
    My mom lived the latter part of her life with bowel complaints and iron deficiencies, now I wonder if she had had a wheat or gluten intolerance as well.
    Be well, be healthy, take care of you.

  145. Jacki

    My family’s gluten-free journey started in October of 2007, when our 3 year old daughter was diagnosed with it after nearly a year of being sick. Her diagnosis and our going gluten-free led to my husband being diagnosed after suffering GI problems for several months.

    Shortly after her second birthday, she began to occasionally throw up after meals, had chronic ear and sinus infections, and just was not thriving or growing as a normal 2 year old should. We went from pediatrician to pediatrician, and grew extremely frustrated. They all seemed to just treat the symptoms (she has an ear infection, here’s antibiotics) but never looked for an underlying cause of her lack of weight gain, constant sickness, etc. By her 3rd birthday we were extremely worried and exhausted. She was throwing up on a daily basis and refused to eat. She complained of constant stomach pain, had a terribly distended stomach, went back and forth between diarrhea and constipation, was tired, and walked around like she was in a fog. She had no interest in playing or anything. She weighed only 25 lbs.

    Finally, we went to a pediatrician that people told us to stay away from because of her horrible bedside manners and general unfriendliness. She looked through our daughter’s medical records and the first thing out of her mouth was “has she ever been tested for Celiac?” I had no clue what that was, but agreed to have the tests done. That day we were sent for blood work, had tests run on her stools, and had an appointment with a pediatric GI who specialized in Celiac. A week later it was confirmed through blood work that she had Celiac, and she was sent in for an endoscopy.

    As soon as we got the diagnosis, she was put on a gluten-free diet and within a month all of her symptoms cleared up! In 4 years time she went from being in the 25th% for weight and height to being in the 75% for weight and height. She will be turning 7 next month and is 4-feet tall. She is thriving and happy and healthy.

    My husband was diagnosed with Celiac after being on a gluten-free diet cleared up his GI problems (stomach pains, diarrhea, head fog, migraines, etc). He had moved to the US from Denmark in 2004 and within 3 years had developed Celiac from eating our overly processed white flour. In Denmark the only breads he ate were rye-based multi-grain breads, and apparently his body rejected overly-processed white flour. When we travel back to Denmark to visit family he is able to eat all the breads he wants with no problems.

    I always tell people that going gluten-free was the best thing for us, and that I am so thankful that my husband and daughters health problems can be “controlled” by eating good, wholesome food.

  146. Sandy

    I have been in a fog most of my life. The kind of feeling you have when your ear is stopped up, like you are at a distance from everyone else. I also would have unexplained gastrointestinal problems, bad complexion, total lethargy. This year (I am 66) I went to an accupuncturist who suggested I try a gluten free diet. I have been gluten free for 7 or 8 weeks now. I feel like a new person, like I suddenly got younger, got more energy — complexion is better already, no gastrointestinal symptoms. I can’t believe the difference. My husband is amazed as are my children.

  147. gretchen

    wow. thank you … each and every person here!! I have had tummy stabbing pains since i can remember. in my early 20’s it got severe to the point where every day around 1 i could no longer stand upright. after a year and a half i finally found a digestive enzyme that helped and lived pretty ok with it for the next 15 years.

    I would have ‘bad’ days. crippling pain on occasion. but it wasn’t every day. often i would feel full, like stuffed to the gills thanksgiving dinner full, from one meal and not be able to eat for 6–7 hrs. my spouse at the time was frustrated in that we could never really plan a lovely dinner out. I just wouldn’t be hungry and i may have been ok with just sitting and watching them eat.. but yeah.. i guess not so fun for them. actually as i think about it, i can look back and think of countless meals that i just sat and watched everyone eat.

    the critical mass came in 2008, i had gone thru a nervous break down after my divorce and was rebuilding a life, but it was slow. i took a part time job and found that learning the tasks was near impossible the brain fog i attributed to the depression was like pea soup. i couldn’t remember simple tasks.

    then the exhaustion and bloating came. i bloated so severely that i looked 5 months pregnant and couldn’t even bend to tie my shoes. i would be so near passing out tired by the time i got home at 5 that i could barely get my shoes off and head on the pillow before i was asleep. i would sleep for 3 or more hours and wake up feeling like a slug.

    this would happen every day. my skin was ashen.. my eyes were sunk deep in my skull. my cheeks gaunt, my joints hurt, i injured easily and wouldn’t heal, my immune system was shot.. i got every cold that came round and it would land me in bed for weeks.

    i had done the medical testing years ago, and been told it was nothing.. to take a pepcid. so i didn’t go back there. i went to pharmaca.. and talked to a naturapath… now mind you at this point, ANYthing i ate bloated me severely… even a glass of water. i was literally afraid to eat.

    She told me that it sounded like my body was in a severe inflamitory response and that we would start by eliminating gluten, soy and dairy.. she put me on digestive enzymes, intestinal healers and sent me on my way. within a week i was feeling 50% better.. and after a 1 month… I knew i had found my healing path. in fact i was feeling so so much better.. i tried a cookie.. you know just to be sure… pooof.. blew up like a balloon and ‘passed out’.

    now being gluten free has been sooper easy… there are plenty of alternatives and i’m just vigilant when going out about asking lots of questions. the no soy, no dairy is a might bit harder…

    I had a flare up about a year ago, and had to go back to eating just veggies and meat.. and was on all kinda natural herbs + healers.. but it’s working.

    western culture seems to not understand the deep connection between your gut and your health…

    thank you shauna.. thank you all who have shared. if you think you might have an issue.. just try eliminating gluten.. it can’t hurt, and you might actually feel great. you owe it to yourself to feel good.

    love.

    –g

  148. Gabby @ gabby's gluten free

    I have gluten intolerance, not formally diagnosed. It is suspected that I have Celiac, but it can not be tested since I made the mistake of going gfree before being tested. I was sick for so long — migraines, fatigue, joint pain, skin problems, perpetual illness, stomach ulcers, and inability to lose weight despite healthy eating and exercise. On a recommendation from my nutritionist at my sports medicine doctor, I cut out all wheat for two weeks. It was amazing. Soon after, I went completely gluten free and it was the most transformative experience of my life. I had energy, my health improved, and the skies were blue again. I will have been gluten free for almost a year now and I
    am noticing even more changes. My joints are better and that unwanted weight is finally coming off as my body heals. It is an amazing thing to know how food can heal or hurt and once you begin to live in the world of healing food, it changes you.

  149. Molly

    Thank you for this post. Personally, I suffered major depression for a decade. In desperation after increasing anxiety attacks, I had a prescription for more different drugs in one hand and a new book on a natural solution in the other. After removing gluten (following UltraMind Solution to the letter) I never looked back. 6 months later I stopped taking all my meds and have been in remission for 2 years. I’ve never felt better, removing gluten changed my life. No more sadness, no more stomach aches. I never have heartburn and I haven’t been sick (not even a sniffle) in 2 years. Saved my life.

  150. krista

    Ok, so i’ve never been ‘diagnosed’ as having celiac’s disease, or even having a sensitivity/allergy to gluten. However, for as long as I can remember; bowel movements, abdominal pains, crazy and painful rashes, bloating, fatigue, and many other staple symptoms were the norm.
    My Daughter was born Nov. 1, 2007. My first and only born, my love, my light, a true gift! For 11 1/2 months I nursed her, and though we did start to introduce food into her diet around 6mths of age, it truely wasn’t till she started day care that we noticed sometime was definetly not right. She was fatigue easily, (which was alarming because she was a toddler), her stomach would bloat to an unreasonable size, she would be constipated for days until we would have to resort to supositorys. At this point,t he constipation was enough for me to realize it was something she was eating. I started my own process of elimination. Of course you start with the obvious — milk products, peanuts, bananas, etc. When subtracting those from her diet didn’t make a lick of difference, I started introducing more fruits and fiber to help. I didn’t know what was wrong, but I knew for certain it was something she was eating. I remember the day it happened. 1 day after her 2nd birthday. She had been constipated for 3 days… I was starting to lose myself as a parent, as a mother. I thought I was failing… and all the while harming my child.
    I put her in the bath after dinner, and literally watched her stomach inflate throughout the ‘Rub-a-Dub’ song. I recounted what we ate for dinner… and ‘AH-HA!!’ I think i’ve got it!! I bellowed for Adam (Daddy), and told him that from hence forth for the next 5–7 days we will not give our daughter any ‘pasta, or bread’ as I had put it then. Miraculously her bowel movements regulated — she was an energetic being suddently — her stomach stoped bloating after meals — and the dark circles under her eyes dissapeared.
    It was a FREAKING miracle!!!
    Believe me, I wasn’t without contacting doctors before I embarked on this miraculous epiphany…
    I tried the pediatrician who sent me for a skin allergy test (even after I requested a food allergy test), which proved nothing. I made an appointment with my own family doctor who suggested the same thing.
    It was as if no one understood what I was going through.
    Finally, she’s 3 1/2 now. There are some struggles with her being at a sitters everyday. There’s the other children and their snacks, but we’ve educated her. Surprisingly she can recognize a lot of foods she can not eat. She does say..” I can’t eat wheat and I can’t eat gluten”. It’s helped with her knowing just this little tidbit of information.
    Now, the food is costing me an arm and a leg, but it’s worth it.. to have a healthy and thriving child. I’ve been looking into getting a medical certificate in order for me to claim her grocery bills on my taxes at the end of the year. This has been the most frusterating experience of my life. My family doctor and my daughters pediatirician refuse to sign off of a medical certificate without the report of findings froma fecal test which requires her to eat wheat and gluten for atLEAST 6 weeks.
    Now, you tell me what parent in their right mind would subject their own child to pain and discomfort? It’s like ordering up a death sentence to your loved one.
    It’s not right, and i’ve done the work for the medical profession.. through process of elimination have determined her nutrition requirements. Why is my word not good enough? As if i’d intentionally spend hundreds of dollars a month in order to get a tax write off when i’m already barely living above the poverty line?
    Regardless, my daughter is healthy. It’s not been a piece of cake but it’s easier now… it’s routine.. and it’s splendid. In fact, she LOVES baking with me. She loves looking at Shauna’s pictures of her little girl Lu and comments on how cute she is and how she’d love to play dress up with her one day or read her a book about Clifford the Big Red Dog!
    We’re all healthier because of this new(ish) diet we’ve adopted. All of my symptoms have slipped away slowly. I’ve become more educated and because of this blog in particular we’re informed and happy to cook day in and day out.
    It’s all good!

  151. Eleny

    Constipation, sever constipation, from as far back as I can remember. In 1996 I discover the “Eat Right 4 Your Type” it said for me to take all wheat out of my diet, I did. Since then I haven’t had constipation but on a rare occasion. The last few years I have noticed that when I get glutened I also have pain. I have not been diagnosed but I believe I have sensitivity to gluten at the least.

  152. Jo Fitzptrick

    Wow I have just spent nearly an hour reading peoples stories.…and mine is pretty similar (sorry its so long i got carried away)

    When i was in my final years of high school i was tired all the time. I did lots of sport so just put it down to that. but when i got home after school and training, i would need to nap, 1 hour sometimes 2. Then bed a couple of hours later for 10 hours sleep only to be exhausted every morning trying to drag myself out of bed. Looking back i dont know how someone didnt see the tiredness and know it wasn’t normal.
    Also even though i brushed my teeth all the time i still had tons of fillings and had tonsilitis and infections pretty regularly…I guess i was just seen as a ‘sickly child’
    When i moved out of home to go to University my diet changed from meat, veg and potatoes(not a lot of gluten) to fast cheap food, pasta, noodles, pizza, sandwiches. So even though i was slightly sick from the small amount of gluten i ate at home it all began to multiply and get worse once i turned 18.
    I always felt full and bloated, constantly burping (big burps like barney in the simpsons) i would wake myself up at night farting(!) , even though i was slim and exercised i had a spare tyre of fat around my middle. I went to the toilet maybe once a week so suffered from cramps, but often had bouts of severe and disgusting diarreha. I was so so tired all the time. I was on anti-biotics every second month and had black circles under my eyes. I didn’t listen to my body, i was too busy working, studying and partying.
    This went on for nearly 5 years until one day after eating some wholegrain wheat bread and then rushing to the gym where i worked, i nearly vomited, leading to a random conversation with a co-worker who recommended me seeing a kinesiologist who had a room in our Fitness Facility.
    He was great and looked at me and my life as a whole– diagnosed me with a wheat intolerance. I remember going home and taking everthing out of my cupboard that was wheat and all i was left with was butter and jam! After a week or so I felt amazing for the first time in years but my doctor said to me — No you just feel normal now, this is what normal is!!
    Over the years (i have now been GF for 8 years) i have done elimination diets and figured out Maize also makes me sick. I have never been tested for Coeliac and probably won’t either as i haven’t eaten gluten since (apart from the couple of times a year you get poisoned by people who dont care or know enough) and won’t go back on it just for a diagnosis!
    I love the blog and all the info avilable online, i bake myself, stay positive, plan my food, always have snacks with me and love that there are so many more foods available now.
    I would just say to people who are trying to figure it out– LISTEN TO YOUR BODY, pay attention to what it is telling you and know what is in all the foods you eat. Information is key. It is not as hard as you think it is :)

  153. Peggy Murphy

    When we tested my son for food allergies at the age of 3 he came up allergic to wheat and other various things. Going gluten free has been the best thing for him. His speech was delayed, he had recurrent ear infections, eczema, and diarrhea. We are still dealing with the eczema but everything else changed. He is like a different kid. After a year of him being gluten free and my own allergies, eczema and mood swings getting worse, I went gluten free too. It has helped me so much. I have more energy and my mood has taken a drastic turn for the better. I slipped one afternoon and used a packet of non-GF soy sauce and was thrown into a deep depression for 3 days. It was awful and mind blowing. I had no idea Gluten was affecting me so much and that it was one of the causes of my life long depression. Thank you for sharing your story and for helping those of us who have struggled so long to find the root of our own health problems.

  154. Lenora

    Thank you so much for opening this dialogue.

    For me, my celiac/gluten sensitivity diagnoses came after a year of hell. Extreme bloating, with a hard stomach, horrible constipation then horrible diarhea. No energy, no libido, Migraines, joint pain, depression, excessive weight gain despite a healthy diet and going to the gym 5 times a week with a personal trainer.… No one knew what was going on. My doctor advised me to take high doses of fiber supliments, eat extra bran…then I started to develop rectal bleeding.
    We panicked. I was tested for colon cancer. I had ever kind of invasive scope you could possibly imagine. Nothing changed , no diagnoses. I was sent home with rectal bleeding and vomitting one night from the ER. That was the last straw for me.
    I was desperate. I contacted a local naturopath. Thank the heavens for him.
    He did a simple allergy tested and found I do indeed have a wheat allergy. I communicated this information to my family doctor, who scheduled blood tests.
    Blood tested positive for celiac antibodies.
    I was angry, frustrated and had lost trust in my family doctor. Why hadn’t she suggested that before? I had to endure so many embarassing and painful procedures, the stress of thinking I HAD CANCER.…
    I’ve been seeing my naturopath regularly now. A gluten free diet and biweekly colonics have saved me.
    I find I“m having sensitivity to dairy and eggs while I detox from gluten, but he says that is normal and will pass.
    I have lost close to 30 pounds in the first couple of months. I’ve regained my energy, my libido, no more migraines… I get the occasional bloating but not nearly as bad as I had before.
    I worry about the damage that was done by the high bran fiber regiment my doctor had me on for months… I’m still angry about how little is known about Celiac and how little is done. I’m stilll angry for being treated like a junkie everytime I went into the hospital.
    The healing process is slow, but there is healing none the less.

    My celiac diagnoses lead me to start a cooking blog of my own, which is how I discovered your site. I am so very thankful that you are bringing so many issues to light for all of us sufferers.
    Please keep doing what you’re doing.

    –Lenora, New Brunswick, Canada

  155. Britt

    I never linked my myriad symptoms until I gave up gluten and they ALL went away. I’d been suffering from stomach pains for years, constant actute achiness that would from time to time flare up and feel like something was slicing me apart from the inside out. I was perpetually bloated and constipated. It typical for me that I wouldn’t go to the bathroom for more than a week at a time, and things reached the point once that I actually threw up because my body couldn’t contain anything more.

    After years as a regular blood donor, I suddenly started being turned away for having iron that was too low. No matter what I ate, what supplements I took, I couldn’t get it back up. On one occasion I managed to get it barely high enough to donate platelets, but my calcium was so low (and calcium is carried in your platelets) that my lips started to go cold and numb during the donation. They fed me Tums until they said they probably shouldn’t give me any more (I think I ate a dozen) and were astounded that they hadn’t made a difference. My body couldn’t absorb things. I had regular dizzy spells. I fainted. I was hypoglycemic, malnourished, and deficient.

    Now, more than two years gluten-free, my iron and other vitamin levels are awesome. I no longer carry tool softeners and glucose tablets in my purse–they’re not even in the medicine cabinet. I feel incredible and I’m often amazed by the lack of sensation in my abdomen. Sometimes I pause and go, “Wow, it feels so great not to feel anything!” And when I accidentally do get a dose of the big G, I cannot believe that I lived feeling that way for YEARS, thinking all the while that it was just my version of normal.

    This is not a fad. It’s not a device for grabbing attention. It’s a medical issue with serious repercussions. People need to get that. Thanks again, Shauna, for being a vehicle to help that happen.

  156. Kim

    Not long after my daughter was born, my body seemed to be falling apart. Suddenly it seemed like every thing I ate made me feel terrible, often running to the bathroom within minutes of meals. Body aches, muscle spasms, major abdominal pain & bloating, frequent sprints to the bathroom, fogginess, tiredness…nothing in my body seemed to be working right. I began the doctors appointments to try to figure out what was wrong. After a battery of blood tests, it was fibromyalgia & IBS-D. I was sent to physical therapy and given a smooth muscle relaxer for the IBS-D. I took control of my life and started eating better and exercising regularly, even when I didn’t feel like it. Things improved a bit. For 10 years I took the muscle relaxer twice a day, before lunch and before dinner, just so I could eat. Sometimes it worked, sometimes it didn’t. Towards the end of those 10 years, the abdominal symptoms got worse, with the muscle relaxer rarely working. I returned to hours of agony spent curled up on the bathroom floor sweating a cold sweat and shaking like a leaf, praying to just pass out from the pain or die. Those around me were in a constant state of worry…should we go to the ER? What can I do for you? Nothing, there was nothing they could do and I knew it. Every morning I would start out fine, but by 2pm every day I could feel it start. The bloating, the pain, the fog, the misery. I got to the point where I would not do anything with anyone after 2pm because I knew how I’d feel. I met with a new gastroenterologist before what was supposed to be my second colonoscopy. I mentioned to him that I had read a lot about gluten intolerance and sensitivity, and asked his opinion. He mocked me and made me feel like a complete idiot for thinking I could have a problem with gluten. Forget the fact that the first colonoscopy had found microscopic colitis, forget the fact that I have had allergy testing and am allergic to all kinds of things. He made it clear, he thought I was stupid for considering gluten as a problem. I was so angry when I left that appointment that I cancelled my colonoscopy with him and immediately went on a gluten free diet with the blessing of my GP. Within 2 weeks I could actually eat food again! I had failed to realize that oatmeal is often cross-contaminated with gluten, so those first few weeks weren’t perfect. But as soon as I cut out that oatmeal, life was good.

    I have now been GF for almost 2 and a half years, and it is the best thing EVER!! While I do still have fibromyalgia, which means the muscle spasms and pain did not go away with cutting out gluten as I had hoped, the fog that I often lived in and the massive abdominal pains that nearly sent me to the hospital hundreds of times are GONE. It is so wonderful to again be able to eat with friends, to enjoy cooking and baking, and to just feel so much better. Because the pain from eating is gone, I have been able to push myself to do yoga every day, which helps a lot with the fibro. I’ve become a much more healthy eater, and that has helped my family out as well. We cook most all of our dinners from good, fresh foods and the few times we eat out we pick places that also prepare fresh foods & never go to fast food restaurants.

    I don’t know if I have celiac or just gluten intolerance, and I don’t care. I can’t eat it, no matter what. Sometimes my kids will say they wish I could have gluten so I can try something they like, but I have never regretted my decision. I have learned to bake so many yummy GF goodies and GF meals that people that eat it never know it’s GF!!

    1. Mary Ann Reynolds

      Reading so many of these posts where doctors are just plain stupid and untrustworthy. I hope everyone who’s ever been dismissed or mocked by a doctor for thinking they might have a problem with gluten emails their comments to those doctors. Heck, maybe we should publish their names!!!

  157. Doug

    This is a cool article!! I’ll share my story…

    In High school (over 20 years ago) I remember going on a ski trip and having no energy.. I couldn’t keep up with my buddies… I figured I was just out of shape! The next summer I had a blood test that revealed Anemia, hemoglobin of 9 at the age of 16. So I started taking iron supplements and never really thought about it again! Over the years I did suffer from daily stomach aches in the morning, an occasional stomach bug that would last for a few days and go away, to me it seemed like basic stuff that I could deal with. Till the spring of 2009, my wife is a Physician and went to a meeting and stumbled into a lecture on Celiac disease.. She comes out of the meeting and her first thought is Doug, I think you may have Celiac disease! First thought was nah, that couldn’t be me, I really don’t have the symptoms. Fast forward to August I had a GI bug that lasted 2 weeks, in which I lost 20lbs and led my wife to schedule an appointment with a GI specialist. I went to the appointment and talked about my symptoms and we talked about some possibilities at the end of the appointment, he’s like I want to do a regular blood test and test for Celiac disease and go from there. The next day my wife called to get my blood test results and my Hemoglobin came back at 9 again, my red blood cells were very small and looking at those tests we knew right then, I probably had celiac disease.… 5 days later my GI doc called me while on vacation to let me know that I had Celiac Disease and he was setting me up to do a Biopsy and Colonoscopy… which also confirmed my DX… I have been gluten free to the best of my knowledge, because I am one that doesn’t get many symptoms if there is accidental exposure, I will not knowingly eat it, because I can still see the picture of my smooth small intestinal wall. I no longer take Iron supplements and my hemoglobin sticks at 15, I haven’t had a morning stomach ache in 2 years, I no longer get Canker sores in my mouth, which I would almost always get at least monthly… I just completely P90X and planning on doing it again! My ability to recover after workouts is dramatic. I can’t imagine ever going back. It’s hard to imagine that one food can really make such a difference. Looking back I dealt with Celiac disease for over 20 years! In fact my wife decided to try a 6 week gluten free trial, which led to some minor changes in how she felt… so she decided to eat half a cookie and the next day, her stomach hurt and she felt that she couldn’t clear her head all day… my wife is now gluten free by choice.

    I see patients myself with chronic canker sores, or autoimmune lesions and I mention that mine all went away by changing how I eat.. sadly my patients dont take me seriously…

  158. jen

    I won’t get into my symptoms, but will say that barring the weight gain, the paragraph stating there are over 300 symptoms sums up my major issues. It was as if you were saying; “jen, your symptoms are, but are not limited to…”

    Thank you SO much for this blog. As someone new to the world of being gluten-free– AND feeling better, this blog has been a wonderful find.

    Thank you. :)

  159. jen

    I started a long post but realize it is much a repeat of all these amazing, strong women and men who have posted already.
    With hindsight — I can look at a photo of myself as a toddler and see it from there. Bloated belly. Clubby fingers. Bad teeth. Anxiety. Depression. Tummy problems. Much more.
    With gratitude, I am hoping my diagnosis at age 37 will help me avoid some of the long-term effects that my grandfather dealt with, and my mother has had to deal with. She’s been gluten free a few months longer than I, and it’s completely turned her health around.
    Just over a year gluten free, at 38, I am so grateful to continue to learn how to be a caretaker and champion for myself. That has never been my strong suit.

  160. Mary Smith

    I have had stomach problems as far back as I can remember and have suffered from migraines since middle school (so bad, that between 7th grade and 12th grade I passed out half a dozen times from them while at school)…anytime my stomach acted up, my mother would have me eat toast and saltines and she used to joke about how sensitive my tummy was. My weight has fluctuated wildly since I was 13, I was always either really skinny or really heavy in that bloated, Stay Puft marshmallow man kinda way. In 2005 I got so sick that I was unable to eat anything at all without getting sick and I got to the point where I started smoking (to kill my appetite; if your not hungry, you won’t eat and if you don’t eat, you won’t spend all day in the bathroom on the toilet crying) and pretty much lived on toast and Ensure extra calorie drinks. When I FINALLY got a doctor’s appointment for it, they couldn’t figure out what was wrong with me and said that my diagnosis was Colitis by default and to eat dry toast and saltines when it flared up. My migraines started increasing in frequency, my fingers and toes started going numb and then just stayed numb all the time, my skin was breaking out like a hormonal 14 year old boy, my gums were receding and bleeding and the enamel on my teeth started breaking down, my hair started falling out, and my get up and go got up and left. I was depressed, I was anxious, and I was scared…my GI referred me to a freaking psychiatrist.

    Fast forward to 2007: I had no medical insurance and I got the worst rash ever known to man on my bottom (because God really does have a sense of humor) and I could not afford to see a doctor about it. I assumed it was hemorrhoids and tried every otc treatment to no avail. Luckily for me, my friend’s husband was a dermatologist and he offered to take a look at the rash free of charge. I will never forget that day…he knew exactly what it was and biopsied it just in case…it was DH. Other than accidentally ingesting gluten, I have not touched it since I received the diagnosis. My migraines are all but gone, my skin finally looks like the skin of a 38 year old woman and not a teenage boy, my weight has stabilized, my neuropathy is gone, my depression and anxiety have all but disappeared, and my hair is no longer falling out. The damage to my teeth and gums is permanent and there is nothing I can do about that, but at least it is not progressing anymore.

    As for the psychiatrist? I knew then that I wasn’t crazy, that it wasn’t in my head, that I wasn’t suffering psychosomatic symptoms. If nothing else, this journey has taught me that WE know our bodies and ourselves better than a doctor who spends 15 minutes with us and I have learned that I am my own best health care advocate. This has been a long strange trip, that’s for sure, but without having taken it, I would never have appreciated teff flour or the simple, unadulterated joy in figuring out how to make a gluten free Hostess cupcake!

    Xoxo…Mary

  161. fragilemuse

    I started developing a gluten intolerance about 8 years ago, though at the time I had no idea what the problem was. At the time I was quite poor and pretty much living off ramen noodles, pasta and rice, so when I started developing intense stomach pains every time i ate the noodles or pasta I figured it was just due to my poor diet in general. I remember describing it as if my entire intestinal system was stuffed with crushed glass. As I could afford it I started phasing out the ultra-refined flours in my diet and started eating more whole grain breads and brown rice rather than pasta. That worked for a couple years, though I would still get intense pain if I ate any sort of refined wheat pasta. I also still suffered from a constant cycle of extreme constipation and diarrhea to the point where I went to my doctor several times only to be told i had IBS and just had to deal with it. This was rather upsetting because I was getting tired of dealing with the constant bloating, cramping and pain, not to mention severe mood swings, eczema (which I didn’t realize until now was related), inability to lose weight, crushing fatigue, depression and brain fog.

    Around this time I had started hearing a bit about gluten intolerance and Celiac disease but never quite connected the two until the summer almost 3 years ago when I went to NYC with friends. On our last day there we had a huge french toast breakfast and within an hour I started suffering intense stomach pain which lasted for about a week. It felt like my entire intestinal system was inflamed and cramping. At this point I read some more about gluten intolerance and decided to make the change.

    It will have been 3 years this August since I went gluten free and I cannot believe the change it has made in my body. I have lost 35lbs without any effort (whereas before I had to fight to lose even 2lbs), my IBS symptoms are completely gone, I still have a sensitivity to dairy but not as bad as before, my eczema is almost completely gone and only shows up when I’m under a lot of stress, and I am no longer as fatigued or depressed or lost in a fog.

    I have cheated a few times and eaten something with gluten in it and always end up paying the price. I start getting stabbing pains in my stomach within an hour and in 2–3 hours (and onward for the next 3–7 days) my intestines get that horribly inflamed and swollen feeling and I get cramps and diarrhea. Not fun! I haven’t been officially diagnosed and knowing what is involved in such a thing I doubt I ever will get diagnosed as I am NOT putting myself through 6 weeks of eating gluten.

    Thank you for posting this and thanks to everyone who has been sharing their experiences. Reading everyone’s comments has made me more aware of how MUCH gluten intolerance actually affected my life all those years.

  162. Jacqui

    With every bone of sincerity in my now gluten-free body — thank you for the validation. I can’t tell you how many times friends and family have said, “If you think you’re celiac, why don’t you get tested?“
    How about I just not eat gluten and feel better for it?

  163. Tina

    My symptoms began to show when I was quite young. It always hurt to eat. I never had normal bowl movements. I had eczema and rashes quite often. If there was a cold that went around, I got it. My joints ached — I began to develop arthritis like symptoms at the age of 13. My menstrual cycles started off irregular, and continued to come too often, and at unpredictable intervals, I was put on birth control to “balance me out” before I was out of 7th grade. I was lactose intolerant, I developed acid reflux and soon after, involuntary vomiting after meals was the norm. My medical records show complaints of painful digestion and chronic diarrhea from age 2 on.

    Several friends and family had asked me about gluten intolerance but I always brushed it off — I ate bread all the time, how could it be the bread that was hurting me? Bread, or carbs in general, was my staple food. When I ate, it was always sandwiches, pizza, pasta, noodles — I lived off wheat. Ironically, all this wheat eating did not cause me to gain any weight. I was always thin. No matter what I ate, I weighted the same. This could have been viewed as a good thing, and for many years I shrugged this off as, “good metabolism” but there were too many other strange, seemingly unrelated, poor-health symptoms that continued to nag at the back of my head.

    Doctors had shrugged me off as a melodramatic kid with a bad case of IBS (irritable bowl syndrome) and suggested I learn to manage stress better and keep a food log. One doctor became so fed up with my complaints and multiple failed diagnosis that he sent me home with muscle relaxers — like that would solve my problem — just drug me up and send me off.

    After several terrible bouts of illness in college — where I was eating the worst food of my life, drinking far too much beer and not sleeping much — I became so ill I had to put myself on a very restrictive diet in order to pin down what exactly my food irritant was. Surprisingly — even with a food journal, documenting what I ate, when I ate it and how I felt after, I still didn’t put 2 and 2 together to find the gluten issue. And neither had the doctors, even after a colonoscopy. It took the “gluten rash,” as I call it, to bring me to admit what I had suspected, but tried to deny, for years.

    The rash, aka: Dermatitis Herpetiformis (google it), started on my left foot — it was small — and considering my history with skin issues — didn’t alarm me. It was there for a week — then another week — then the third week it got bigger, it got itchier, it got redder and it started to bleed. The rash did not go away. The rash began to scar my foot. I became so embarrassed of my icky, red, scarred foot that I made efforts to hide it from sight. I asked doctors about my rash — they said it was just “really dry skin” — like my eczema, “just put some of this cream on it and it should go away.” No such luck.

    Finally I took my health into my own hands. With the help of several friends who were diagnosed with celilac, I began some research. I looked up the “gluten rash,” and was beyond surprised — WHO had put pictures of my icky, rashy left foot all over the internet?!? With one web page I knew what I had always suspected. I was gluten intolerant. There was no way I was about to go back to a doctor for a diagnosis — I had given them a chance, in fact, I’d been giving them chances to correctly diagnose me for 24 years. This was my turn.

    I tried a gluten free diet for a week. That was all I needed. One week. One week turned my life around. One week and I could eat with out pain. One week of normal, solid bowl movements (If you had lived the last 24 years like I had you would know how big this was in my life!). One week of going out drinking with friends without having to run home early because I had a stomach ache. One week of less headaches. One week of more energy. One week of a happier Tina!

    I’ve never looked back.

    Take the innovative. Be your own best advocate for your health. This is YOUR body and YOUR health — if you want to feel better — take the first step. The rewards far outweigh any inconvenience of re-learning how, and what to eat. Understanding your body, and what it needs to be healthy, is YOUR responsibility and the rewards reach far beyond yourself (just ask my family and boyfriend). There is no downside to trying — just take one week — it’s all you’ll need to know.

  164. Consuela Morales-Streit

    Knowing now that I have gluten intolerance, I can look back on my young life and realize there were signs way before my body literally began to break down. I have never ever been able to get enough rest. My mother would joke that I was the incarnation of Rip Van Winkle. I would rather sleep then wake up to watch Saturday morning cartoons. What normal kid does that? Not much has changed in that regard really. I still require 10 hours of sleep to feel more normal.

    In school I would suffer from brain fog, especially after lunch. One doctor said I was hypoglycemic, but it didn’t matter if I ate a balanced low glycemic diet, because I still had to fight the urge not to fall asleep afterwards. I was a complete zombie. It was hard for me to gain weight and I got sick quite often. My senior year in high school, I stopped growing and was 5’5″, but just barely 100 lbs.

    I played a lot of sports, and my body was always sore. No one ever told me that the pain I constantly dealt with was not normal. Best way I can describe the pain, think of how you feel after a really hard workout. All your muscles are on fire, burning and tight. That’s how it feels, but I barely have to do anything to get that sensation. It will last for days, sometimes a week. I just figured everyone else felt the way I did, and if I complained I was just being a wimp. So I never said anything. It wasn’t until I reached my 30s that my health really took a turn for the worse.

    After marathon running for 4 years straight and learning Kung Fu, my body decided it had had enough. I was treated for an h.pylori bacterial infection in 2008 and only felt well for a couple of days, before my whole world changed. I remember waking up to intense pain and cramping in both my legs, arms, shoulders, stomach and back. I gingerly slid out of bed only to have my legs buckle out from under me and fall to my knees. I got back up on my feet and struggled to hold up my now, 125 lb frame. I knew something was wrong, something had changed. I could barely move my legs and I did what I call “the granny shuffle” to get room to room. You know, when you see an elderly woman pushing a walker, shuffling her feet. That was me, minus the walker. I had gone from being able to run 20 miles without batting an eye, to struggling to stand and walk. I was scared, embarrassed and then later just plain mad my body was failing me.

    Two years later, and countless specialists (neurologists and rheumatologists) I was told I had Fibromyalgia. So I continued to live my life, but in constant pain. It wasn’t until I had to see another doctor for a kidney infection that the nephrologist heard my story and thought to test me for Celiac Disease. Now armed with a proper diagnosis and the knowledge that all I needed to do was avoid gluten to feel better, I did what probably most newly diagnosed patients do. I would go gluten free for a couple of weeks or a month, and then cheat. By December of 2010, I had enough. I was sick and tired, of being sick and tired! I’ve been gluten free ever since.

    I’m happy to report that I’m no longer in constant pain. The gluten really messed up my nervous system, because my left side of my body, especially my leg is a little slow to react still. I can walk pretty normal and know one is the wiser, but I still have to make an effort to walk normal. If I don’t pay attention to my gait, I will start to limp and drag my left leg a little. It’s only been about six months since I’ve gone gluten free. I’m healthier and stronger than I have ever been.

    Right now, I’m trying to let my body heal from all the years of damage I’ve done to it. I still cannot exercise a lot with my legs. Swimming, cycling and walking are the most I can do right now, but in small increments otherwise that pain returns. I’m hoping that by this time next year, my body will have healed enough to allow me to resume some if not all the activities I used to enjoy. Not sure if I will ever be a marathoner again, let alone the triathlete that I planned to be. I’ve learned to appreciate the simpler things in life and the mere fact I can walk. I haven’t given up hope on some of my athletic goals, but its baby step for me now. Guess that’s better than granny steps, eh?

  165. merrie

    I have a pet peeve and I just have to get it off my chest. The condition I have is not “celiac.” It’s “celiac sprue.” The word “celiac” is an adjective which means “of or relating to the abdomen or abdominal cavity.” There is another form of sprue, “tropical” sprue. To say “I have celiac” is the equivalent of saying “I have tropical.” This really really bugs me! Words have meanings.

    The other way of referring to the condition is to call it “celiac disease.” I don’t like to use this because I don’t think of myself as diseased. Again, this is a word that has a lot of meaning, in this case loaded with negative meaning.

    So, I appeal to you all to use “celiac sprue” to refer to the condition. No, it’s not a pretty word, I agree. The “before” pictures we all have aren’t pretty either.

    I know I’m just a lone voice crying in the wilderness on this issue. So I don’t expect that it will change. Just gotta put in my two cents.

    Merrie

    1. shauna

      Actually, I appreciate this. Normally, in interviews, I use celiac sprue. It gets people attention. Unfortunately for those of us interested in grammar, I believe that “celiac” has made its way so far into the colloquial that it’s going to stick. But I’ll do what I can.

      1. Dan

        If we are going to split linguistic hairs let’s please split them correctly. Saying “I have celiac” really means “I have intestine,” and yes celiac has definitely become an accepted shorthand for celiac sprue.

        Dan

    2. Becky

      Since we’re getting pet peeves off our chest — please don’t call it celiacS. And don’t refer to a person with celiac disease as “a celiac.” Seriously. Thank you.

  166. Suz

    Thank you for writing this Shauna. I think it is an important piece for all of us as a community to read, understand, recognize, and share with one another.

    I suffered, for years and years from several of the more unpleasant of the 300 symptoms of Celiac and never had a normal response to food for as long as I can remember. It took doctors a lot longer to test me for Celiac for 2 reasons given by them: I was gaining weight, not losing it and there wasn’t a lot known about Celiac so they always wanted to search for Crohn’s and Cancers first.

    Finally with a simple blood test, I was shown as just being on the borderline of Celiac and was told if I stopped eating gluten I would never test as full blown. When dropping gluten, I didn’t feel better right away. I went through about 3 really tough weeks where my body struggled as the gluten left my system and I lost a big source of energy I was relying on in wheat based products. Once my body was really off, I felt much better. My eczema went away, and has never come back. I’m certainly in a better place than when I was eating gluten.

    Now comes the unfortunate part of my story. I’m still riddled with mystery medical problems that the doctors are having an impossible time solving. Strangely, because of the Celiac, they either think I’m sneaking myself gluten (which I’m not) or because of the Celiac I can’t have additional problems. I think it’s just as important to recognize that some people who have Celiac may have other medical problems too, that can’t only be blamed on the disease.

    I’m so happy that so many people are being diagnosed now. I was very sick from a young age until my 20s because doctors just said I had a “bad stomach” or was stressed out. Now at least I know what I can eat and how I should feel afterward.

    1. Kim

      Suz, I think you make an excellent point! An early diagnosis of mine, fibromyalgia, didn’t change once I went off gluten. I’m also still hypoglycemic, suffer from Reynaulds, and am lactose intolerant. It seems like some kind of “natural reaction” by everyone to lump all symptoms under one diagnosis, once a diagnosis like celiac is made. I’ve read many of these posts here today, where a lot of people’s symptoms were caused by their gluten intake, but like you, while my life has improved dramatically with cutting out gluten, other medical problems continue to plague me. Best of luck to you and I hope you can find the answers you need!!

  167. Dan

    Unlike many others I didn’t really feel too bad pre diagnosis. A routine physical turned up pretty bad anemia which my body had accomadated very well due to very gradual onset. I have to credit an insightful gasteroenterologist who suggested a blood test for celiac despite an earlier abnormal but not positive biopsy. My TTG came back sky high and the rest is history. The only other clue present was a chronically extremely low cholesterol level. After going gluten free that came screaming up to normal. I never would have suspected celiac on my own so sometimes the doctors are the good guys.

    Dan

    1. MaryG

      Dan, I too had extremely low total cholesterol–I was in a research project about cholesterol and diet about 10 years before my diagnosis and my cholesterols were in the range of 95 to 105–that’s TOTAL cholesterol! After diagnosis, up to 150’s-160’s–normal. Now I know that was because I wasn’t absorbing fats. However, I don’t think very low total cholesterol is in the differential diagnosis for sprue. More educating to be done.

  168. Natalie

    My story is embarrassing to me.

    I was a yoga instructor-in-training. I had been going to classes several times a day, logging hours, improving my body and my mind. I found that every time I did certain poses, I was starting to feel pain I hadn’t before, and not just the “oh that’s a big stretch” kind. My joints felt inflamed and in pain and I couldn’t do spinal twists anymore because I felt as though something (my liver?) was swollen under my rib cage and getting in the way.

    I stopped my training, and stopped going to yoga for a while.

    And then, my already small 107 lb body that already had difficulty maintaining any weight started to lose weight. I was under 100. I was lethargic. I had chest pain and difficulty breathing. My stomach was having disgusting reactions to every meal and I spent a great deal of time in the bathroom.

    Then one day, I was taken into the hospital for a heart attack. Only, it wasn’t a heart attack. It was just all the symptoms of a heart attack. Doctors humiliated me. The nurses and paramedics said my EKG was abnormal and I should be tested further for heart attack. The doctors were less concerned. Obviously I just had stress problems. Still, doctors ran stress tests. Found that my heart was in fact incredibly strong, but after several x-rays, tests, tests and more tests, said that all my tissue was highly inflamed, including the connective tissue in my joints and chest…which could trick anyone into thinking they were having a heart attack.

    So they said I had Lupus.

    Then found out I didn’t have Lupus.

    I finally called my mother-in-law, a naturopathic doctor who lives in another state. She suggested, from afar, that I go on an anti-inflammatory diet. The most important thing was that I did not eat ANY gluten for several weeks. I was also not to eat corn, caffeine, chocolate, or dairy. Ouch.

    I started feeling better almost immediately. And then it was time to test my body, because she couldn’t run tests for me from where she was. I tried dairy, just fine. Tried chocolate, no problem. Tried corn: sick, immediately. The way people allergic to bees are to be stings. So I kept off corn and gluten again until my body was normal enough to see about the gluten. I tried it in pasta…and was sick for two and a half days!

    Now, off gluten and corn, I am gaining and maintaining a normal weight, back into my physically rigorous routine, pain free, high energy, and not living like a permanent resident in the bathroom. I don’t know if this is typical for most women, but for the first time in my life, I am no longer experiencing menstrual cramps or PMS symptoms either!

    Like you said, not all of us have been officially diagnosed. But I really am not willing to eat gluten ever again to have the blood panel done. I’m satisfied.

  169. Samantha

    A gastroenterologist first diagnosed me with ulcerative colitis, then he called me unexpectedly at work one day and told me, actually, it’s Crohn’s disease. I asked if there was anything I should do diet-wise to help, he told me to avoid fried foods. It’s true when doctors admit to not learning much about nutrition in med school, it’s seriously not recognized as important enough, yet. It took over a year of talking to people who were living in fear of Crohn’s flare-ups (that can be triggered at a moments notice! you have no control! you can be in remission for 20 years and suddenly a bite of an apple will send you to the hospital!) for me to finally go to a naturopath who diagnosed me with both gluten and soy intolerances. It’s only been a few months, but the change to my diet, along with some supplements to re-build my system have made me a new person. Everyone comments on how great I look, and I haven’t felt this good in years. I’m only 28 years old, but I’m a new me, and life is really really good. In a few days I’ll finally go off of the medication I’ve been on for the past year and a half, and I couldn’t be happier about it. It was all so simple. I wish more people understood. I know this thread of comments will help someone.

  170. daisy17

    I’d spent much of my 37 years dealing with frequent and consistent gastro problems like diarrhea and bloating, and it finally turned into massive stomach cramping almost all of the time — which kept me from exercising or even keeping dinner plans — last year. I thought about what I had read on your blog and in Tea Austen’s book and I wondered whether food could be making me sick. Tests for celiac came back negative, but 3 days into my gluten-free “experiment” my gastro symptoms were almost entirely gone. Energy was up. Over time, depression subsided as well (hard to tell if there’s a direct link there). I’ve been off gluten for almost a year and I won’t go back other than for an occasional bite. And those bites cumulatively can end with me having an upset stomach, so they are selective and pretty rare. While I miss pasta and bread (I don’t eat GF versions very often as I don’t love them), there’s nothing that I miss so much that I’d go back to how I felt before last summer.

  171. margaret

    Self diagnosed around 2003 after the symptoms started in 1995 after the birth of my son. Bloating, foul smelling and painful gas, lethargy, depression, very low energy. My sister was the first one to suggest going wheat/gluten free. Within 3 to 4 weeks, I felt better. Not 100% better, but definitely better. I also struggled with the idea that it might be all in my head. But within hours of getting glutened (accidentally or otherwise) my belly swells up like I am pregnant, my intestines feel sore and tender and the foul gas and constipation returns.

    In 2009, I was diagnosed with Multiple Sclerosis. Numbness in my whole right leg from the foot to my butt. I have been healing my gut using a combination of the GAPS diet and supplements. Vitamin D3 is crucial. I urge everyone, especially those in northern climates to get tested. It’s really important.

    My husband’s grandmother was diagnosed with Celiac/Sprue by a resident in the 1960’s. She was on death’s door. Her tongue was black, she could not keep weight on, her systems were shutting down. She was eating Cream of Wheat every day because it was easy to digest. Once she went off gluten, she lived vibrantly until almost 100.

    There is hope. Shauna, thank you for this wonderful website and for allowing us to share our stories that other people might gain knowledge and hope.

  172. Allison Wilson

    Shauna, I credit you with saving my life. YOU are the reason I went gluten-free four years ago. I was sick my entire life. Always exhausted, I took a 3 hour nap every.single.day. after school. I couldn’t focus in class and it made me wonder if I was stupid and should be taken out of those gifted classes I had been put in. Sure, I could get the concepts. But I had to read a sentence 5 times before I could tell you what it said because I couldn’t focus. Everything was always foggy. I had strep throat as a child more times than I can count. In high school, I had unexplainable rashes all over my face. Always sick.

    And then as an adult, I had a very hard pregnancy with my son, who is now 7. I went from feeling kind of crappy all the time to feeling like I was dying all the time. My body just never recovered from the stress of the pregnancy. My hair started falling out, I had rashes all over my face, daily crippling migraines, exhaustion so extreme that climbing a flight of stairs would make me need a nap for hours, sleeping 15 hours a day, depression so severe that I considered suicide, 20 lbs. that wouldn’t go away no matter how much I exercised or how much healthy whole wheat food I ate (over half my diet was whole wheat — yikes!) and a fun eye condition kind of like eczema on the inside of your eyelids called Blepharitis that usually only people in their 70s develop. So, I thought I was dying. I went to doctors for over two years and had countless crazy and expensive and embarrassing tests done just so they could tell me what I didn’t have. Or diagnose me with vague illnesses like Chronic Fatigue Syndrome or I.B.S.

    And then one day, I decided that it HAD to be something I was doing to myself, something that changing my diet would fix. I don’t know why. Probably because I was out of options and I was convinced that if I didn’t figure it out on my own, I would die. So I googled my symptoms and YOUR website came up FIRST. I clicked the link, and it was like being lost and finding your way home. I was so relieved and excited to find out that this was why I was sick, and the fix was as simple as changing my diet. I didn’t even mourn the fact that I would never eat “real” bread again because no piece of bread was worth feeling what I went through.

    When I asked my doctors to do the blood test, they brushed me off and told me, “Celiac is really rare, you probably don’t have it.” I persisted because hell, they just did a $12,000 colonoscopy, what was one more blood test? So the day I had my blood test, I decided to just go gluten-free and see if I felt better. I decided that even if my lab result wasn’t positive, I needed to see how I felt because a piece of paper didn’t matter much to me if I still felt like I was dying. A week later when the doctor sheepishly called to tell me that yes, I did in fact have celiac disease, I could tell him that I already knew because I had never felt better. Within just a week of going gluten-free, my body had started to heal and every single thing that was wrong with me had begun to reverse. It took probably 6 months for me to really feel well again. In fact, my definition of feeling well previously had just been that I felt slightly less crappy than I normally did. I didn’t even know what it felt like to really feel well until I went GF.

    To say that going GF changed my life is an understatement. It SAVED my life. I really think I wouldn’t have made it another 2 years. Even my mom has told me she was so worried I wouldn’t make it. Both of my children are GF now. Julian, who is 7, went GF when he was 4. I was the only one in the family who was GF, and then he started developing rashes on his face just like I did as a child. Once we changed his diet, his rashes cleared up. Audrey is 1 and has never had gluten. I still don’t know if I’m ever going to introduce it into her diet. I’m convinced that it’s not a good thing for people, period. So now all of us are GF: me and my husband, and our two kids. Even our pets are GF. Ha!

    Thank you, Shauna, so very much for being the person who saved my life. I honestly think I wouldn’t have made this change if it hadn’t been for finding your blog that day. xoxoxoox!!

  173. Jennifer

    My celiac kicked in after an unexpected pregnancy in my mid-20s. Pregnancy was fine, but afterwards, I had all kinds of symptoms that persisted. I knew that something had changed, but I blamed it on everything else. Pregnancy, getting older, “turning into my mother.” When my wrists ached, I thought I got tendonitis from the pregnancy. The constant digestive issues, I passed off as hereditary, since my mom has the same thing. Exhaustion? Motherhood. Headaches? I needed my eyes checked. Acne? Hormones. Weight? Pregnancy again. For the first several years after giving birth, I lived on digestive enzymes, drank lots of coffee, and wore wrist braces when I had to pick up my son. I was just older.

    What I was having a harder time living with was the acne. That I knew I was too old to deal with, and I tried everything. I had read that wheat was related to acne in some people, so I decided to give it up. For my skin. I was wheat free for a few months, but not totally gluten-free yet. My skin didn’t get much better at first, but I was amazed at the other changes. The bloating and migraines were gone. Lucky for me, an acquaintance had celiac. He was diagnosed in his teens, and was pretty vocal about it. I started emailing him, asking questions. I knew it all sounded familiar.

    I decided to go through testing. I wanted to know, because I had a child and there are genetic connections. Now, I wouldn’t recommend it. I started seeing a gastroenterologist, had blood tests and an endoscopy. Eating tons of gluten eat day and feeling instantly awful again confirmed it for me. For three weeks, I ate gluten-filled sandwiches every day, and pasta at night. I was so bloated that my clothes didn’t fit. I had headaches, couldn’t think, couldn’t drive from feeling so foggy, my wrists shot pain up my whole arm, and I broke out. I knew. But my tests were negative.

    I don’t care if I have “celiac” or not. I don’t really know what that means. The “acquaintance” is now my partner. I’ve been gluten-free for almost 4 years, and with him for 3. I had similar symptoms to him, reacted in a similar way, and as far as he’s concerned, my health concerns are just as important, even though he (and his mother) tested positive and I didn’t. What I know is that I get sick enough that I have a hard time functioning, and that it’s my body telling me to listen. My wrists rarely hurt anymore, headaches are gone, and I’ve lost the last ten pounds of baby weight, and don’t have digestive issues at all. My son does eat gluten, and on the rare occassion that I cross-contaminate, I know. If a crumb makes its way into my mouth, I’m hazy within ten minutes, and bloated for 3 days with the inevitable headache. Tests schmests. I know what I can and can’t eat.

    I feel lucky. I found out by accident, trying out a fluke wheat-free diet trying to cure my acne. And what followed was amazing…finding health and a great partner at the same time. I feel really lucky to have only suffered for a few years, and really lucky that I’m not living it anymore.

  174. Kristin

    For over a decade, I suffered with fatigue, brain fog, tingling in my hands and feet, joint pain, menstrual problems and skipped cycles, occasional migraines, ovarian cysts, swings of IBS, chronic sinus infections, vitamin D deficiency, and have had a difficulty gaining weight despite eating well. I searched for answers with multiple doctors, and in the process discovered that I had osteoporosis at age 26. While most of my symptoms fit under the umbrella of fibromyalgia, my osteoporosis did not. This baffled my doctors, and I continued my search. Finally, when I was 32 years old, I was diagnosed with severe intolerances to both gluten and eggs. I was tested for celiac disease by biopsy and genetic testing, and I do NOT have celiac disease. Even without that specific diagnosis, gluten has left a permanent mark on me that I want to erase! I have been gluten and egg free for 3 years now, and the incredible changes in my life happened within 2 weeks of that switch. I will not cheat my diet. It isn’t worth it, and there are plenty of other wonderful ways to cook and bake without gluten (or eggs).

  175. Amy

    I have always had a quirky belly, constant sinus and ear infections since I was itty bitty. I had chronic UTI’s, candida issues, joint pain, migrains, rashes, rashes and more RASHES. At 14, I was (mis) diagnosed with IBS. They told me to eat lots of whole grains and drink soy milk. Had I not been allergic to soy and LOTS of grains, that would have been helpful! I learned to “live with” the constant tummy issues, blaming pork, beef and eventually all meat for my tummy issues. I struggled with endometreosis and a slew of “chick issues.” I started having rosacea after my youngest son was born. It got much worse 18 months later, when I had a hysterectomy, followed by my son’s diagnosis of Autism at two. I tollerated the daily diarrhea, joint pain, fatigue, mood swings and all that good stuff, but when my face got so bad that I couldn’t cover it up for the life of me, I went to the dermatologist. We tested for everything from Fibro to Lupus, nothing but elevated ANA levels. No reason why. So we started rosacea med after med. I reacted to ALL OF THEM. I went to other doctors, they said I’d have to laser treat my face ($3–12,000.00 that insurance wouldn’t cover) or live with it. They said there was no connection between the candida, UTI’s, headaches, tummy issues and my face.

    Seven doctors later, I got fed up and went to a Naturaupath. She looked at me and said, “Oh honey, your body is ANGRY! How’s your gut? Do you have any issues with yeast? We need to do a food panel stat, but I’ve got a strong feeling that gluten and dairy are NOT your friends!” She then asked me for 90 minutes about every ailment from head to toe. She urged me to get the blood panel done that day, and get off gluten ASAP.

    Two weeks later, we got the result back. LOTS of food allergies, especially gluten, dairy, soy, several grains, beans, seeds and nuts. She urged me to go to a GI specialist and be tested for celiac.

    My GI doc, who is surprisingly gluten-aware and natural medicine-friendly, saw that we’d have to do a biopsy and other tests. She knew I’d have to “gluten load.” After 30 days without it, that was AWFUL, but a darn good confirmation! 4 testings later, she was so shocked that I wasn’t celiac. She told me my DNA said I didn’t have it, but you could have fooled my body!

    I have been able to re-introduce about 1/5 of my low allergy causing foods back into my system, now that my gut is happier. I eat (a LOT– thanks, Shauna!), I live, I vacation and I wake up feeling SOOOOOOOOOOOO much better! My face is almost completely healed!
    A year later, we found out why my body acts so “celiac-like.” I have a double allergy to gluten. I didn’t even know that existed, but the NP instructed me to live “like a celiac” for the good of my insides. The learning continues … :)

  176. Amy P

    I had terrible, migraine level headaches almost every single day for nearly 10 years. They started in college and I thought that they were tension headaches– which is what doctors continued to tell me. I did yoga, I got massages, I took medicine and nothing helped. The throbbing in continued. So in January, entirely fed up with feeling so crappy, I put myself on an elimination diet. Within three days, the headaches were gone. After the month was over, I tested multiple forms of gluten and they all gave me headaches. I also found that dairy was the source of my stomachaches– so I’m a much happier person without either of those food groups than I ever was before simply due to how much more functional I now am!

  177. Courtney

    I’m not sure what my diagnosis will be as I just went for the blood screen last week and have an appointment with my doctor June 1. What I do know is that I have been dealing with GI issues and other various symptoms since I was in my early teens — almost 20 years!!

    At around 15 years old I started waking up every morning with lower abdominal pain. I’ve been gassy my whole life and have had bouts of constipation and diarrhea. Occasionally it would be so bad that I’d have to sprint to find the nearest bathroom so that I didn’t crap my pants. At 16 my family doctor told me it could be colon cancer (who tells that to a teenager?!) but she ended up diagnosing me with IBS. I started taking Dicetel and my symptoms normalized. After I graduated from high school I gained a lot of weight. Most of it was probably because I stopped playing sports 3 days a week.

    Fast forward to 2006 when I start having gallbladder attacks. I ended up in the hospital for a week in 2007 because my liver was over-functioning and they took out my gallbladder. I felt pretty good after that but then I had my daughter in 2009. I had a c-section and attributed most of my symptoms — the fatigue, hunger, mood swings, just not feeling well — to caring for a newborn. I lost most of my baby weight but then gained it all back plus some. I am constantly hungry. I have a low-grade headache pretty much everyday. Then, in 2010 I had what we thought was an appendicitis attack. I went to the ER but the doctor on call wasn’t convinced that’s what it was so we waited out the pain which eventually went away. I’ve had 2 or 3 attacks since then which have also included diarrhea and vomiting. The doctors didn’t really have an answer and just called it gastroenteritis. My doctor said possible chronic appendicitis. Never once was Celiac disease brought up.

    This past Easter my mom asked if I’d had any more abdominal pain and my aunt joined in on the conversation. She had self-diagnosed a year ago and said that she felt a million times better within a week of cutting out gluten. She said my symptoms sound a lot like Celiac disease and she suggested I ask my doctor for the blood test.

    And here I wait. On the one hand, I hope the test comes back positive because it would be an answer and a reason for feeling the way I do. On the other hand, I’m terrified the test will come back positive because that means giving up a lot of my favourite foods. And what does this mean for my two year old daughter? I have a lot of questions but will hopefully be getting some answers soon.

    Best of luck to everyone and thank you Shauna for your incredible blog!

    1. Alissa

      I think you can do it! If your test comes back positive, you will be alright — and if anything it will make it easier for your daughter, in the case that she has it down the road, too. My daughter has Celiac — very violent reactions to it.

      I had none of the classic symptoms. I don’t feel bad when I eat gluten or anything. But after she was diagnosed, they tested us and I came out positive for celiac disease. I gave myself a week to binge on gluten and have been gluten-free ever since. It has been 15 months now, and if I can stick to a gluten-free diet, 100% of the time, and have not cheated once, then you can too! It is hard at times, but when I think about wanting to live the best and longest life possible so I can enjoy my kids as long as possible, it strengthens my resolve…even in the face of a chocolate-froste, Bavarian creme-filled bismark donut.… :)

      Hang in there! You can do it!

  178. Ashley

    I have been gluten free for four years this month! I think back to the chronic fatigue, weekly migraine headaches, strange digestive issues and the stabbing pain I felt in my stomach over four years ago, and I am grateful for communities like this and the individuals who are willing to share their stories. Through lots of research and hearing testimonials from the gluten free community, similar to those above, I was able to self diagnose in spite of relentless opposition from my family and Doctors. It was the best decision I ever made.

    The first 23 years of my life, I was sickly and had an overwhelming feeling of crumminess. But in April of 2007, I got really sick. I threw up everyday. I couldn’t eat anything but saltines and pretzels (A lot of good that did). I dropped 30 lbs. in just two weeks. The doctors thought it was a parasite and treated me with meds. After six weeks, my condition wasn’t improving. Out of desperation, I sought help elsewhere. I jumped online and researched every possibility and landed on gluten.

    I was elated to find a whole community of people who felt the same things I have felt my entire life. For the first time, I knew my symptoms were not imaginary, and that I was not alone. I knew I had to give it a shot. I had nothing to lose. The next day, I raided my pantry and tossed everything with gluten away. Within one week all my symptoms went away, and I’m happy to say I haven’t had a single migraine since that day, not one.

    My family thought I was crazy for making such a “radical” change without proof of my intolerance, but I wasn’t waiting any longer to consult with my Dr. (who had already made it clear to me he wasn’t going to test me for Celiacs). They still don’t completely understand, but they are coming around. (I actually wish my mom would get tested or give it a try… I think she would feel better.)

    Being gluten free has been a journey of discovery for me. I was the person who ate from a box whenever possible. But, I love the variety of foods that I now eat, fresh wholesome foods that nourish not only my body, but my soul.

    I’m not one to post much, but today I felt the need to say thanks. Thank you Shauna for all your words of encouragement, your yummy recipes, your passion for food, for sharing your life and for being on this journey with me. =)

  179. Rebecca

    I have had pale skin and dark circles under my eyes my entire life and I bruised if you looked at me crooked. I was a tiny, sickly, skinny kid that my parents and doctors worried about. They removed my tonsils when I was 9 in an attempt to keep me healthy. It didn’t work but I did manage to put on weight when I hit puberty, unfortunately too much weight. Then they diagnosed me with Hashimoto’s Thyroiditis.

    Over the last 50 odd years I have been diagnosed with rheumatoid arthritis, anemia, Sjogren’s, fibromyalgia, depression, chronic fatigue, asthma, and stomach ulcers from all of the medication, some in such high doses I needed regular checks to make sure I didn’t also develop osteoporosis. I have had my gallbladder removed, lost my ovaries and suffered through brain fog, dry patchy skin, unexplained rashes, hair loss, muscle and joint pain, and thought I was going crazy. I have even been through the cancer scare. I have been through too many gawd-awful tests to mention and still no one could do anything for me except throw more drugs at me.

    I was facing disability retirement at age 55 because I just couldn’t face life any more. I was tired beyond reason and no zest for life left. My husband refusing to let me give up insisted I find “alternatives” for the medications I was taking. So I started researching and noticed a trend in the combinations of symptoms I have been dealing with. I sent off for and took the genetic test for celiac, I do not carry that gene thank goodness, and then found myself a naturopath. After all everything I was going through was systematic of a body out of balance. I was put on an anti-inflammatory diet and started to notice improvement within a few weeks. I have more energy, I needed fewer and fewer pain medications and now don’t need them at all – HALLELUJAH! It turns out that I am allergic to wheat.

    My primary care physician scoffed at the idea that wheat could be the culprit, it doesn’t matter, I feel so much better I will never willing eat wheat again. Even with my husband being the catalyst to finding out what was causing my problems he was a bit skeptical at first. After 5 months of being wheat free I accidentally ate a small amount of wheat in a restaurant sauce. Within 15 minutes I had a nasty, blistery rash running up my arm. He asked me how I had survived all these years eating wheat when such a little bit would cause a rash and I told him it had been like a “slow poison.” A small tolerance can be built up for almost anything, but my body had been telling me to stop for years with all of the auto-immune issues I had been suffering through. I am not all the way back yet, but I am getting healthier every day.

  180. Kristin Ball Stevenson

    Since I can remember, I had STOMACH aches. I would cry, complain, fall silent, and sleep all in a state of confusion and pain. I was told by the people around me that I was just more “sensitive” and “artistic” even diagnosed as having “anxiety issues” at age 5 (I was diagnosed with “anxiety” because of my stomach aches and indigestion during the night.)
    Reproductive issues started immediately at 13 years old. Intense OVARIAN CYSTS, crazy STOMACH PAIN, BODY ACHES and SKIN RASHES.
    Finally as a teenager, diagnosed with depression at age 17, I said to my doctor “Wouldn’t you be depressed if you had a stomach ache every time you ate? If you were sick for months and years at a time with no diagnosis?“
    I got down to 106 pounds and by the time my doctor tested me I was basically dying. My THYROID completely shut down inducing hypothyroidism and a coma like state, I couldn’t stay awake for longer than 5 hours a day.
    2 weeks after I stopped eating gluten, the rash disappeared. 3 weeks later I could eat and actually digest food. 4 weeks later I was glowing (partly due to the amazing diet of vegetable, grains like quinoa, and fruit.) It was AMAZING. I had never been so happy, a large black cloud lifted off of my shoulders.
    I have to say that I am still HYPOTHYROID and I have severe ENDOMETRIOSIS. I lived for 18 full years eating something that destroyed my body. So it is still healing. I feel tired and experience body aches on most days. I am suspect of guar gum and may start another elimination diet to see if that helps.
    It is a long road, but well worth the effort.
    Let’s get the word out. I don’t want any kid go through what I went through. I used to sit in restaurants after the family ate and just cry…
    THANK YOU SHAUNA. You are a beautiful person I am blessed to know.

  181. Colleen

    A year ago January my oldest son (9 yrs) started having stomach pain. Not really any other symptoms-just severe pain that would make him lay in bed crying. He went on a bunch of meds for ulcers and reflux, which didn’t help at all. Finally he saw a gastroenteroligist in April last year. I remember being in the waiting room and looking at all the pamphlets-one of them for celiac-and thinking, wow, that would really stink to have to deal with… After a stomach scope and blood test he was diagnosed with celiac.

    It’s been a long year-he took a very long time to improve and feel better. I would read accounts of people who stopped eating gluten and immediately felt a huge difference and I would wonder if there was something we were missing. I hated seeing him cry and be in pain and feel so helpless. However-we made it through and I feel like we are getting to the bright side of things. Looking back now at photos of him from last summer, I see a very malnourished child. He has now grown 3 inches and gained 10 lbs just in about 6 months. And he is finally feeling better.

    I wish we had been able to have him looked at sooner when he first started feeling sick, and I hope that as the word gets around about what this is-that more doctors will look at celiac as one of the first dianoses. I just think of those 4 months before we knew what he had when he would come down at night and eat crackers…something bland for an ulcer… ugh! The other thing that gets me is people who say “he’ll grow out of it” in the hopes of being encouraging.

    This is a tough one on a kid-who just wants to fit in with his classmates…and instead can’t eat school lunch or the birthday cupcakes. But as he feels better he can tell the differences more-when he eats gluten he feels cruddy-and that helps him understand the positives to this way of life.

    And, Shauna-thankyou thankyou thankyou for your writings here. As I mindlessly searched online for some understanding after his diagnosis I found your blog and I read about eating gluten free. And you were so positive and happy and it was like a little ray of light. Reading your blog has also encouraged me to be braver in what I cook and bake-going from thinking something would be impossible to try to now really thinking that anything is possible!

  182. Sara

    A gastroenterologist that doesn’t check everything is so frustrating. Pills, colonoscopy, powdered mix for water, and a quick diagnosis. When the pills didn’t work or were too expensive she moved on to something else. I have what looks like outright acne on my forehead, depression, very overweight, and lower digestive problems that send me to the bathroom about 10–20 minutes after eating. It feels like my colon is being ripped to shreds and it’s hard to go anywhere. Stomach problems would make more sense right after I eat since food doesn’t go through that fast, but I have no problem with that, just my lower GI tract.

    I so appreciate reading your blog and all of the responses. I still suffer every day and feel like I’m not being heard with little ability to see another GI specialist. I will keep reading and try some of the recipes on here. Thanks!

  183. MizDahlia

    Wow, Shauna, just wow. I’ve been reading your site for about 4 years…yours was the first “food blog” I became a fan of; mostly I just love your honest and open writing, your positivity and the joy you exude. I don’t have any gluten sensitivities (I mostly avoid dairy) but your recipes inspire me to create food for those I love who do have allergies — you make it so easy and accessible. The comments on this thread are impressive — what a difference you’ve made in people’s lives! You keep writing and cooking and I’ll keep reading. :)

  184. jeanelane

    Reading so many comments makes me wonder.

    I went to a new chiropractor years ago who did testing on me to determine my nutritional requirements. This was something he did with all new patients. One item on the list that I should not eat was wheat. I discovered that eating wheat, especially a large amount, caused me to itch and eventually break out in hives. Nothing would help except time and avoiding wheat. I have mostly eliminated wheat, but not gluten. Wondering if I should go the next step. Even wondering if this would help my husband’s digestive issues. But he is so attached to burgers and pizza. Perhaps if I just suggest a change for one month and see how things go. Especially with some of Shauna’s recipes!

    1. LJ

      I’ve wondered the same thing. I don’t have crazy intense celiac symptoms, but I do feel a lot better if I don’t eat wheat for several days (no brain fog, teeth are whiter, etc). I can’t get my mind around the idea of going completely GF, though.

  185. Janet NZ

    I had IBS since early teens. Menstrual ‘issues’, migraines. I would time my eating so that I could be near a bathroom ‘in case’.
    Bloating (“When is the baby due?” a common question).
    Severe abdominal pain led to gall-bladder removal… pain continued.
    Acid reflux (or should that be ACID REFLUX!) — became constant, crushing fatigue, brain fog, depression (hardly surprising really) led to endoscopy.
    The gastro bounced into the room saying ‘Good news — you don’t have cancer, but you do have coeliac disease. I’ve taken biopsies, but they are just a formality — I’ve seen the damage, your intestines are scalloped — you definitely have coeliac disease.‘
    Biopsies came back negative.
    But, by the time I had the results I had been completely gluten free for two weeks. And felt SO MUCH BETTER.
    My specialist says I’m one of the ‘funny ones’ (and he doesn’t mean funny haha), and he doesn’t know what advice to give someone like me…sigh
    My GP, on the other hand, while insisting that I do not ‘technically’ have coeliac disease, is intrigued that I’m doing so well gluten free, and is recommending a gluten free diet to his other patients with similar issues.
    If I get accidentaly ‘glutened’ (because there is NO WAY I would cheat) — the first indication is a return of the reflux, then bloating, diarrhea and fatigue — all of which can last 3 — 4 days…

  186. Kristin

    I haven’t read all the responses and I haven’t see this one much, but my #1 symptom was nausea…not just a little, but debilitating, horrible, I’m going to throw up any second nausea. Diarrhea 7–8 times a day, raging hunger yet I was so nauseous I could hardly eat so I could only eat a very small amount at a time 6–7 times a day. Any empty feeling in my throat and esophagus like it was just a big gapping black hole, which my Dr’s tried to tell me was acid reflux/heartburn which I knew was not as I have had heartburn twice with my pregnancy and it definitely was not that. I had every single test in the book for 13 ½ years with everything being normal. The weird thing about mine is it would “go away” when I was pregnant and about a year following my pregnancy which baffled everyone and made them think I was even more nuts then what they already thought.
    In September 2010 I went to my OB to rule out endometriosis and discuss monthly issues only to discover I had adenomyosis not endo and he said it is possible that the adenomyosis was causing the nausea/diarrhea. I had a hysterectomy at 32 (yes I knew I was already done having children), it solved all the horrible female problems, but I soon realized it was not the root cause of the digestive issues and I was dealing with 2 things. As a last resort I eliminated the usual suspects, spicy food, coffee, caffeine, chocolate and actually got worse, then I kept stumbling on gluten and realized a pattern of history in my family. I took myself off gluten and by day 2 I KNEW I had figured it out. I refuse to go back on gluten to get a biopsy for celiac (my blood work was neg in 2006). I know it is the problem and will never touch a speck of it again. My trusted wonderful doctor for over 13 years told me “there is no way gluten could cause those digestive issues”. I now have a new doctor. I also helped my neighbor figure out her digestive issues were gluten related and she is going better than ever. At 6 months GF I am still healing but loving every single day!

    1. Kristin

      I forgot to add brain fog which I didn’t know I was in until I removed gluten and the fact that I weighed 99 lbs, I always told my doctor it feels like my digestion is too fast and my body isn’t absorbing any nutrients…it’s all going in the toilet. I did drop to 94 lbs since I started the GF diet but am gradually working my way back up and on the days that good wholesome naturally GF food just doesn’t seem to fufill when my body is screaming for calories I make a batch of GF brownies. Yummy!

  187. Sarah

    I just went gf this year due to some research I was doing for a friend. I did recipe testing as well as web-searching.

    Then I went started eating wheat again I started in with sneezing. I knew I always sneezed a lot .… then I realized I had not been sneezing when doing my gf testing. And also right away I started wheezing and my my asthma acted up while I was eating.

    … then I checked my (memory :-) and my medical records for when I got bronchitis ( which I usually got very bad 2x a year … once in Dec and once in July . Both of those seasons was when I did a lot of baking for a Christmas cookie exchange at church and for a Blueberry Festival in July.

    … so i put 2 and 2 together … does that make sense?

    I am still trying to figure out if I may be gluten intolerant or have gluten allergies? Is there a difference? Anyway I feel a lot better when I stay gluten free!

    So I have found another baker to do the July baking for the Blueberry Festival and will just look at the cookies in the Christmas cookie exchange and be thankful I can breath without wheezing and eat without sneezing as long as I remain Gluten-Free!

  188. Adrienne

    In 2001, I ate my way across France and Italy, visiting friends, exploring museums, and tasting everything wonderful those countries had to offer. When I got home, my skin was bursting with eczema and I couldn’t seem to eat anything without feeling extremely sick. The doctors had no clue what could be causing my symptoms, so I went to the naturopath office of a friend. She handed me a list of just about every grain, as well as a host of other foods, and told me to stay away from all of them. I found myself on a sort of home-cooked “elimination diet,” as I tried different things on the list and worked out a diagnosis for myself. It took me about 2 years of trail and error, but I figured out that gluten-free was for me. I’ve never been officially diagnosed, but I won’t eat gluten again just to prove my allergy. Besides some of the common digestive and intestinal issues with gluten, I also just throw it up if I eat enough of it. (Incidentally, this is exactly the reaction my mom got when she fed me my first cake on my first birthday. She thought I was allergic to carrots!)

  189. Dee

    Wow. Boy am I grateful to have found your blog! I was Google searching for a gluten-free brownie recipe to make for my son as a little treat tonight, and what a gem I have found here! We’ve recently put my sweet boy on a GF, and mostly CF diet to see if it could make any difference in his behavioral issues/mood swings, but the more I read about gluten sensitivity/celiac, the more I think I’ve got a problem, too. Severe joint pain, foggy-headedness, extreme fatigue, nausea and bloating. All day, every day. I will be reading reading reading your blog to search for possible solutions. THANK YOU.

  190. Kiri

    I have celiac sprue, and I didn’t know this until I was 46. I’ve been as completely gluten-free as possible (barring occasional accidental poisonings) since January 20th. I’ve been sick my whole life, and nobody ever guessed that it might be celiac sprue until I did. I was adopted, and nobody in my adopted family has it.

    I was a skinny little kid who was notorious for being a picky eater. I was always sick, catching every upper respiratory disease that came along. I had severe allergic reactions and asthma, and was on not only inhalers but even a nebuliser for 6 months at 13. I was also very smart (I like to think I still am) with a tested IQ of over 170 (we’ll get to this part in a bit). I had a somewhat abusive family, and was picked on at school, and experienced my first major depressive episode at the age of 8–nobody noticed, I figured it out later. My parents blamed my depression and bad moods and rages on being bullied at school, and at 14 I had an eating disorder–at 13 I’d got fat and my parents had freaked, so I dieted by eliminating most foods from my diet and strictly controlling portions during the day. I knew that school lunches made me feel awful, and I actually felt healthier with the eating disorder because I pretty much only ate veggies (salads) and meat. At 15 I dropped out and took college courses at the school where my dad taught. Unfortunately this was when I started drinking beer. I was never alcoholic, but beer certainly didn’t help with my severe emotional problems. I learned that I was a really good actress and dancer, but I was completely flaky. I began seeing a therapist, discovered that my parents were actually not normal at all, but she didn’t notice the eating disorder because I looked healthy as long as I had clothes on and I certainly didn’t talk about it. At 17 I wanted to go away to school, so I took the GED and got into another school. I lasted 3 months. I had to eat the dorm food and it made me really ill. The depression spiralled out of control and I was unable to remember assignments or manage my time. Suddenly I was showing all the signs of ADHD, but blamed it on my depression and went home, self confidence shattered, to finish school locally. At 19 I got married. I was dancing again and that made me feel better, but at 20 I got pregnant but had an abortion because I was so miserable–I couldn’t eat anything at all and keep it down, and the depression was so bad that I was actually hallucinating. Anyway, I wanted a divorce, which I got. I went off to grad school; it took me almost 6 years to get a MA and I got okay grades but I pretty much pissed off the whole department because I was so disorganised and lost my fellowship, along with at least one work-study job. During this time I developed severe joint pain which was blamed on my dance injuries. Finally at 26 I was put on Prozac. My depression got better, for a while, and I moved to another state, and got married. Things were looking better, but then I got pregnant again and I wanted to keep this one. I have never been sicker in my life. I could hardly move, couldn’t keep anything down, had to go back on Prozac due to getting hallucinations again, and basically lived on rice and Chinese food. I would probably have been OK on that diet were it not for the soy sauce and adopted a mostly-asian diet. But I got pre-eclampsia which became HELLP syndrome, the baby died and I had a placental abruption with an emergency c-section. After this experience, and the former one, I got my tubes tied. Fie on this pregnancy thing. I started working as an admin assistant. I got divorced, moved to California, got into a horrible marriage, left him, then stayed in an awful job for 10 years because they put up with my constant illnesses, lateness, inability to concentrate. In 2004 I got a viral illness and the joint pains got worse and never went away; they put me on pain killers that I am still on but hope to get off soon. Shortly after that, though my weight had gone up to 274, I began to lose weight slowly. Last year, I became extremely forgetful and began to lose words and I thought I was getting Alzheimer’s or something; of course it was gluten ataxia and is gone now, but I was scared to death. I decided that I was going to just accept that I probably had fibro and that this was brain fog and began to read up on it. While reading up on it, I discovered that celiac disease had the same symptoms, and I’d always had GI issues–they’d told me these were caused by ‘stress’ and insisted my joint pain was caused by weight–so I tried dropping gluten for short periods and discovered that I felt better.

    I had to work my doctor to get tested for celiac. She was sure it was nothing of the sort and that it was fibro, plus that woman has been sure since she met me that I will turn diabetic any day–despite never testing as glucose intolerant. But fibro doesn’t get better and there’s a treatment for celiac, so I, who’ve worked as a research physician’s admin for over 10 years, told her to just do the test “to rule it out”.

    I tested off the charts celiac. I had so much gluten antibody in my blood it was a wonder I wasn’t in the hospital. They told me they’d just do endoscopy after I was GF for 6 months because they didn’t need to do one to tell that this was the cause of my problems.

    I can’t say that I am completely off painkillers or antidepressants/stimulants now, but I am able to take far lower doses and realistically I probably can’t just go off them cold turkey. I am no longer suspicious of people all the time, my temper is much easier to control, and I can actually concentrate and plan very well. I don’t have episodes of ataxia. I don’t have random thoughts about jumping off things. I must have lost 20 pounds in 4 months. I still have some issues with PCOS but my GI doctor says it will take up to a year for my health to fully return.

    I feel sharper than I ever had, and like my brain is back online. I really want to go back to school because my job is BORING, but I have a financial mess in my way. I wish there were a scholarship for people whose lives have been completely ruined by gluten. I feel like I am now in my 20s and like I just missed all those years. Everyone says I look like I’m 25 or 30 max, and I am certainly not emotionally in the same place as most people my age–I don’t have a house or a car or kids, I am starting all over. I’m excited and stoked about it, and I’m trying to find a better job and researching scholarships and trying to figure out my finances. Retirement isn’t something I think about because I’ve already BEEN old and sick and now I want to be a young adult.

    But I really wish this could have been figured out before the bad marriages and pregnancies and student loan debt and flunking out of classes and getting sacked from jobs and bankruptcy and all the other crap. I dream about winning the lotto so I could wipe all of that clean, go back to school and start fresh.

    Because now I’m the bright young woman they told me I was going to be, the girl I couldn’t be at 17 and 19 and 21 and 25. And I sure don’t know how to do 46 or how to date people who are established and doing well. Most of my friends are in their 20s. I am sure I’ll figure this out because I’m not depressed any more, but I feel this huge mixture of relief (I’m not really stupid! They weren’t wrong when they said I was smart! There was a reason that even though I learned to read at 2 and could handle college classes at 15, I couldn’t finish grad school!) along with resentment (why didn’t they ever think of this before? why did I have to diagnose myself? how will I ever get out of this mess I made for myself? no one will take me seriously when I say that it wasn’t my fault!).

    1. Jamie

      OMG, I am SO here with you. I am now 32 and about halfway through getting my bachelors degree. I was also reading at 2 (people never believe me when I tell them that!), and I was always very smart as well, but illness and its complications lead me down a very different path than I was capable of. If you ever find that type of scholarship, let me know because I will apply for it too. Doctorate degree someday for me!

      What you say in the following passage BREAKS my heart because I COMPLETELY relate:

      Retirement isn’t something I think about because I’ve already BEEN old and sick and now I want to be a young adult.

      But I really wish this could have been figured out before the bad marriages and pregnancies and student loan debt and flunking out of classes and getting sacked from jobs and bankruptcy and all the other crap. I dream about winning the lotto so I could wipe all of that clean, go back to school and start fresh.
      Because now I’m the bright young woman they told me I was going to be, the girl I couldn’t be at 17 and 19 and 21 and 25. And I sure don’t know how to do 46 or how to date people who are established and doing well. Most of my friends are in their 20s. I am sure I’ll figure this out because I’m not depressed any more, but I feel this huge mixture of relief (I’m not really stupid! They weren’t wrong when they said I was smart! There was a reason that even though I learned to read at 2 and could handle college classes at 15, I couldn’t finish grad school!) along with resentment (why didn’t they ever think of this before? why did I have to diagnose myself? how will I ever get out of this mess I made for myself? no one will take me seriously when I say that it wasn’t my fault!).

  191. Kiri

    Also, I have NO USE for all the doctors who told me that all I needed to do was lose weight to feel better.

    I’m losing weight now. Without trying. I was fat because I had celiac sprue, and I had to eat all day long to get any nutrition at all! I got calories, but no nutrition :( Now I find myself enjoying food, but suddenly I’m done and want to STOP, and then I don’t think about food till I’m hungry again. I wasn’t sick because I was fat.

    I was fat because I was sick.

  192. Jamie

    Before I cut gluten out of my diet almost 4 years ago I would get horribly bloated and have intense stomach pains, gas, headaches, constipation and diarrhea, fatigue/exhaustion, iron-deficiency anemia etc… I had always had intestinal issues as a child as my family did not have much money (or much knowledge that packaged foods=bad) so I grew up on fast food, frozen pizza, and hamburger helper. I was very overweight by my teen years, and stayed that way until I was 20, and then I decided I had had enough. I started weight watchers, and while I was losing weight, I was not getting any relief from my symptoms. About 1.5 years later, when I had lost about 60lbs and hit a plateau, I stopped going to weight watchers thinking this was my ‘normal’ weight. I still monitored my calorie intake in an effort to live a ‘healthy’ life. I was about 165lbs, and still feeling tired along with my other symptoms. My dad had recently been diagnosed as Celiac, and he thought I should get tested too. About a year later I went to the doc because I was ‘sick of being sick’, but they would not test me for Celiac even though my dad had it. They diagnosed me with IBS, and said there was really no cure or treatment for IBS other than monitoring my diet, and cutting out foods one by one to see what made me feel ill. I did nothing to cut any foods from my diet, I was mad at the system. When I was 25 I could not take the pain/frustration of my symptoms any more so I went back to the doctors. I saw specialist after specialist (6 in total) and none of them could figure out what was wrong with me. I had 2 colonoscopies and they ran a gamut of tests, and nothing. Again, I thought I would just be sick forever. When I was 27, I started looking to the internet/blogs to see what other people thought, I came to the conclusion that I would just cut out Gluten (even though my dad had told me to get tested, I had not cut it because the tests were always negative). Within a few weeks almost ALL of my symptoms went away. The first symptoms to go (and the most frustrating ones) were the severe bloating/stomach cramps. IT WAS AWESOME!

    HOWEVER, this was almost 4 years ago and it was SO very frustrating at the lack of available resources for people living a GF life! I remember in the beginning it was overwhelming. It seemed as if everything had gluten in it (even TEA bags!) that I literally ate a plain lettuce salad with tomatoes and cheese for EVERY meal for almost THREE WEEKS! Finally I was so frustrated by my limitations I spend one evening BAWLING and not eating. I kept saying I am so tired of salads! The next day I grabbed the bull by the horns and started in on a TON of research to figure out what I could eat. This blog was helpful, and so were a few books in the stores. But the most empowering thing was getting in to the kitchen and cooking all of my own GF meals. Over the next year I had dropped a little over 30 lbs and I feel great most days. I have only cheated twice, once intentionally, and once accidentally (flour tortilla chips, when I thought they were corn) and I have severely paid the price both times.

    I miss sourdough bread the most, and the convenience of making a sandwich for lunch, but otherwise I am completely used to this lifestyle, and I would not go back for a million dollars. I still have some mild versions of these symptoms; gas, headaches, constipation/diarrhea, fatigue/exhaustion, iron-deficiency anemia, so there could still be some other food culprits, but a lot of these are better when I get my regular sleep and drink enough water. Overall this was a scary journey, and in the beginning I felt very alone, but I am so much happier now. Although I have not officially been diagnosed with Celiac’s, I KNOW I have some sort of Gluten intolerance and I will never go back. By the way, in the beginning of my GF journey I had tried some GF breads, and they were TERRIBLE so I just stopped eating them all together. Recently I went to Mariposa Bakery (I live in the California Bay Area) and I got a loaf of bread that was ‘irregularly shaped’ for 50% off just to try it, and OMG have they made some improvements. I am still too timid to try it without heating it first, but can I tell you that 3 nights in a row last week I had grilled cheese sandwiches for dinner…. Ooh, and the boxed GF chocolate cake mix, made into cupcakes….mmmmmmmmmmmmm.

    I may never know if I have had this sensitivity from childhood, or if it came on as I got older, but I CAN tell you that I have never in my entire life felt as good as I do now!

  193. Karen

    I was a clumsy kid. Always falling out of bed, tripping, bumping into things, falling down stairs. It was always chalked up to lack of coordination. It took me three summers to learn how to ride a bike; my mom even took me in to have my inner ears checked, thinking I had a balancing issue or something.

    I had a lot of stomach aches and constipation, which were chalked up to my love of cheese. In high school I developed bulimia (new studies have shown a link between celiac disease and eating disorders, as well as depression, which I also suffered from later in college).

    I had psoriasis. Not huge patches, but little patches everywhere that would pop up and then mysteriously disappear. My elbows were constantly bleeding from the psoriasis. My mother, incidentally, has psoriasis and rheumatoid arthritis (two autoimmune disorders that are often linked with celiac).

    I had canker sores on a regular basis. I got sick a lot. Nearly constant headaches–so many and so bad that I developed a tolerance to Tylenol, I was taking it so often. My clumsiness just got worse; when I was in college my friends would marvel at the huge number of bruises I had all over my legs, just from bumping into things and not realizing it. When going down a flight of stairs I had a constant feeling of dread/vertigo, like I was going to fall at any moment, even if I was holding onto a handrail. My ankles would regularly just collapse and I’d fall to the ground, seeming to trip over nothing.

    I had an idiopathic anaphylaxis attack when my oldest son was about two years old; I landed in the ER and had hives from head to toe. If my friend, whose house I was at, hadn’t gotten me to the ER in time, I might have died. They tested me for allergies and found I was very allergic to cats, mold, dust, and mildly allergic to green beans, bananas, and apples. But they said none of that alone explained the anaphylaxis. I just found new homes for my cats and took allergy medication.

    After the birth of my third son I developed severe fatigue and brain fog–I couldn’t get out of bed before 9 am, and my husband would have to wake me so he could go to work. My usual constipation became a fun roller-coaster ride between diarrhea and constipation. I was surfing the internet, looking for recipes, and happened on Shauna’s blog here—after reading her story about her diagnosis, and doing some reading about gluten, I started wondering if gluten could be causing my fatigue and digestive issues. I hadn’t even thought about my clumsiness, depression, or regular headaches.

    I told my husband I was going to go gluten free for a week or so to see what happened. Within a couple of days I was waking up at a normal time, and no longer laying in bed exhausted at 8 am. My sleep was better (it’s gotten even better now since I cut out all caffeine!), and my brain was clearer. My husband commented that he felt like he got his “old wife” back! I went to the bathroom one day, and came out and asked him, “Is that what it’s like for normal people to go to the bathroom?!” I had never had a normal bowel movement, at least not what others consider normal.

    I had so much more energy. While it was frustrating to cut out gluten and read labels all the time (this was about 3 years ago), Shauna’s website and other resources made it easier.

    I went back on gluten to try to get a blood test done. The day I ate a piece of bread for the first time, I threw up. I noticed that after a meal of regular, gluten filled pizza, I would be so sleepy I’d fall asleep on the couch. It wasn’t a normal sleep; I felt drugged. The constipation/diarrhea came back. I suffered through it to try to get a blood test result. My test came back negative, but then I read that about 20% of celiacs have negative bloodworkd. Rather than endure three more months of gluten to get an endoscopy, I decided that my dietary challenge would be my diagnosis, and I went gluten free.

    I have never regretted going gluten free without a “diagnosis” of celiac. As far as I’m concerned, I have celiac disease. I did notice that after my body healed from the gluten, my other food allergies–bananas, apples and green beans—got worse. I think it’s the immunological equivalent of getting rid of the elephant in the room so you can find the mice. My clumsiness and vertigo is gone, as well. My psoriasis is cleared and hasn’t come back for a year or more. My moods are much more even and my kids have a happier mom; my husband has a wife who can get up early instead of lying in bed all day. I haven’t had more than two headaches this past year.

    To those who worry about not having a diagnosis—don’t. You know your body best, only you know what it’s like to live with your symptoms.

  194. Marissa

    When I finally decided to cut gluten out of my diet I was in severe pain both physically and emotionally. I am 32 now, but between the ages of 18 and 27 I suffered from a long battle with bulimia. For a long time I have been acutely aware of my body, sometimes in good ways and sometimes in bad. Regardless, I know when something is not okay. After healing from my bulimia, I initially gained weight as my body re-adjusted itself from not being starvation mode and actually being able to take in the nutrients I was not giving it. However, my doctor said that the weight gain would come off once my body realized I was not going to starve it again. So, the weight came off.

    But then, after I started teaching and my schedule became hectic, the workouts lessened and I began to gain weight. Of course coming from a background where gaining weight had been a huge fear of mine, I worried. Yet, the weight kept coming, no matter if I excercised or ate right. I knew something was wrong, but I could not put it into words, I just kept gaining weight. A scary amount.

    In the summer of 2009 my sister got married on a beach in Maui and I would have loved to have been thinner, happier, less bloated, less looked at for my weight, just less. Shortly after her wedding I experienced the most horrible stomach/intestine pains I had ever had. My stomach bloated out further than it could, I could not bend over, nothing worked. I went to the doctor and all they wanted me to do was to take Prilosec, but the doctor honestly looked at me like I was just another fat girl who was complaining and if I would only lose the weight “so many of my problems” would go away. Yah, thanks. I wanted help, in my heart I knew the Prilosec wasn’t the cure, but I tried it anyways. And guess what, it didn’t work.

    I then decided, on my own, to try an elimination diet. A friend of mine learned a few years back that she could not have gluten, so I decided to do the research and cut that out first. Within days I felt amazing. Strange as it sounds, but I could actually feel like there was life running through my body again. It was as if my body, who had been doing battle against itself for so long, was singing “Hallejujah”!! I felt so much better. I slept better, I wasn’t cranky, I felt BETTER than I had in years. Something was working.

    Since that was the case I went back to my doctor not long after to get a celiac test, despite her reluctance. It came back negative, but I had already taken the gluten out of my diet, so maybe I have celiac and maybe I have gluten sensitivity/intolerance. All I know is that my body isn’t fighting a war with itself anymore and I could not be happier. Over the last two years since taking gluten out of my diet, I have dropped from the literally painful size 20 I had ballooned to, to now a 12/14. Sure, I probably have some weight to lose, but guess what…? I am happy. My body is happy. I would like to know if I have celiac, but as Shauna stated, who really wants to incorporate gluten back in their diet for six weeks just to find out. I suspect I might have celiac because of the instantaneous and horrible reaction I have to gluten if it unknowingly crosses my path now, but I do not know for certain. I just know what makes me feel better, and that’s a life without gluten.

    It’s taken longer for family members to understand, but they are getting there. My friends have been amazing and so has this blog. This blog has been a lifeline since I suspected gluten may be causing my tummy issues. In the end, I’ve learned a lot by being gluten free, but what I love the most is the feeling I have everyday when I wake up, I have energy to live, laugh, and love!!

  195. Rebecca @ How the Cookies Crumble

    I really like the points you’ve made in this post. I found out I have gluten intolerance about 3 months ago. Since then I’ve eliminated gluten from my diet and have felt great. My mom keeps urging me to go get tested to see if I have Celiac’s, since my grandmother also had Celiac’s, but I really don’t see the point. My insurances is just “ehh” and I don’t want to shell out a lot of money on a test that says Yes — you have Celiacs or No — you don’t have Celiacs. Either way the only treatment is to eliminate gluten! It’s not as if the doctor can provide you with any other treatment. I also think there’s no reason to “ding” my health record. If I ever need to be privately insured my rates would be higher just by having the “Celiac” label.

    My thought is if eating gluten free (or lactose free, or vegetarian, or vegan, etc) makes you feel better — then do it! Isn’t our optimal health and feeling our best one of our daily goals in life? Stop worrying about labels and do what makes you feel awesome!

  196. Jessika W.

    Three weeks after the birth of my younger daughter, I started developing these strange, high stomach aches. They would show up around 4 p.m. most days, and generally felt like the triangular area below my ribcage was clenched in someone’s fist. The first two doctors thought it was reflux, and prescribed an elimination diet (along with an escalating regimen of H2 blockers and PPIs). I was advised to cut out dairy, tomatoes, alcohol, caffeine, vinegar, and anything spicy. For months I dutifully followed this diet, eating plain baguettes, pasta with olive oil, and not much else.

    Nothing worked. I saw a specialist who prescribed more and different medications. No change. I tried another specialist. At this point, all I wanted was for someone to take a look inside and tell me what was happening down there. When I walked into the second specialist’s office, I saw a sign disclosing said specialist’s financial interest in a local endoscopy center. Yahtzee.

    Turns out my “reflux” was instead a raging case of celiac disease. A mere four months separated the onset of pain and the correct diagnosis. I had no prior history of any digestive
    issues, and the only thing that changed for me once I was on the GF diet (two years on Friday!) was that the stomach pain eventually disappeared.

    People (doctors especially) tell me I was “lucky,” but luck had nothing to do with it. I was persistent.

  197. Leanna

    I have been gluten free for almost 2 years after suffering from alot of the same symptoms, stomach cramps, skin rashes, fatigue, and I actually get indigestion and start burping constantly. However my doctor said it couldn’t be a gluten intolerance because I had never had problems with it before. So I stopped eating it on my own and all the symptoms have gotten better or gone completely. Looking back I think I did have the symptoms all along but didn’t think it was anything.
    I don’t understand why some doctors are so unwilling to accept that it could be celiac or a gluten intolerance.

  198. Shannon

    I spent years trying all sorts of drugs for my ‘fibromyalgia’ — I kept thinking that it was impossible for me to suddenly have so much pain when I was an otherwise healthy mid-twenties female. I had constant headaches and migraines, joint pain, and then the weight gain started. I stumbled across my own gluten intolerance while trying out the Clean diet 6 months ago. I regret so much that I spent those years on drugs, watching my life go by and wondering if it was only going to get worse from there. In the first 3 weeks of eliminating gluten, I could not believe how great I felt. I had the energy of a kid, didn’t need any painkillers at all, and I dropped 10 pounds. I’m so happy I tried something new (for me) and didn’t listen to my doctors!

  199. Sarah

    As a child I was constantly complaining of stomach ailments. I could never get through an entire meal, and my Grandmother would force me to sit at the table and eat and I couldn’t describe to her that the thought of taking another bite made me absolutely ill. I would beg not to go over to her house. I was taken to pediatricians and PRESRIBED MYLANTA, and numberous other gas, heartburn, indigestion remedies but never a clear understanding. I was also always very petite and skinny. It continued until I reached my teens and for some reason or another it just stopped in its tracks. I felt somewhat normal for about 5–6 years until I got into college. I started getting terrible stomach pain. I went back to the doctor and they prescribed another type of antacid that didn’t work. The stomach pains continued, and would come and go, until about 9 months before I was about to be married I was unable to even leave the house. I couldn’t eat, I was exhausted, and utterly depressed. I started seeing a naturopath who managed to get me on some supplements to try and revive me, and get me through my wedding. Shortly after I got married I got pregnant, and I actually felt rather good. My naturopath had suggested avoiding an overload of wheat, dairy, and common allergens so I wouldn’t overload the baby. Well, perhaps that is why I felt better? Shortly after I gave birth I was back at it again with my naturopath, and also the Dr.‘s. It had been literally 3 years since I had actually been able to eat to satisy my hunger, and have a full tummy. I longed for that feeling. Instead I would have to peck away because everything made me sick!!! Well.….it wasn’t long until my naturopath suggested eliminating wheat completely, and finally I went 100% gluten free. It wasn’t easy, and I remember sitting down with your book Shauna “The Gluten Free Girl” in a local coffee shop. I couldn’t put it down. It gave me the courage to realize that I could do it. I didn’t notice immediately, because I think even though I eliminated gluten I needed to overhaul my diet completely because I was so depleted of nutrition. As the months passed by, I slowly found myself being able to eat more, having more energy. I reconstructed my diet, and nutrition. I was eating healthy, eating whole foods, raw foods, and enjoying it all. I experimented with things, and thankfully had a husband who didn’t care what we were eating as long as it was food. Today, I write this as a woman with a four year old little boy. I have energy, I excercise, and I just had a satisfying lunch and my belly is full! I was able to gain 12 pounds in the last few years as well. I am thrilled to share my healthy eating with my family, and educate those around me with what I have studied and come to understand about my battle with gluten. I enjoy experimenting with recipe’s, and seeing the look on people’s faces who can’t believe what they are eating is “gluten free.” Make no mistake, Celiac has left some scars behind including worn tooth enamel, and a sad feeling when I see those wedding photo’s and think of how I was literally just trying to “make it through.” I am proud though that I have never once, “slipped up,” or give up. I still have my life, it’s just my life…without gluten.

  200. Tracy

    Reading these posts from my Gluten Intolerant Tribe is a tonic. I am moved by each story– full of suffering, and full of courage and the will to be well even when doctors don’t know how to help them. I am proud to be part of this tribe.

    My own story is one of the gluten intolerant switch being turned on by stress. My two oldest daughters coped with severe medical and psychiatric breakdowns in their late teens–simultaneously. Their situations were very different–one had an autoimmune attack on her nervous system followed by peripheral neuropathy and debilitating depression; the other has bipolar disorder and made three suicide attempts before she was 18, each becoming more life threatening. Coping with the stress of their suffering led to my own gastrointestinal breakdown. For two years I had unremitting diarrhea, but not much time to focus on it (Looking back, I now realize I had a problem with constipation for years and years before things switched to diarrhea, probably gluten related).

    As my daughters became more stable and I was able to focus on my own medical needs, I didn’t find any answers from my primary care doc who tested me for parasites and sent me off to have a colonoscopy. When she told me she didn’t have any other ideas, I went to see an old friend who is a nutritionist. With her I did testing and learned I had the genetics for gluten intolerance (not the celiac genes but another set of genes associated with non-celiac gluten intolerance) and elevated anit-gliadin antibodies.

    Going off gluten went a long way toward easing my symptoms, but not all the way. I then eliminated dairy and felt better but still did not have full GI health. Now I am 2.5 years into my gluten and dairy free life and have been tested for Cross Reaction–where one’s body mistakes other foods for the gluten and dairy that it was attacking as invaders. I hear a lot of talk about Cross Contamination but not much about Cross Reaction. I am now coping with a daunting list of about 20 foods and spices that my body is Cross Reacting to –in other words, foods my body is continuing to mount an attack against thus causing my unresolved GI symptoms. Basic foods like eggs and garlic, and a host of other seemingly random foods like asparagus, tangerines, red pepper, green beans, almonds, hazelnuts, chili powder, allspice, sage, cinnamon, paprika, marjoram, maple syrup and more are on my list of Cross Reactive foods.

    I have made peace with not eating gluten or dairy–a process that involved all those stages Shauna describes. I’m a foodie living in the foodie heaven of Northern California and giving up things like Tartine bread and Cowgirl Creamery cheese was tough. But I am so over gluten and dairy now. I have no desire for either of them. I am having a much harder time coping with this strange list of 20 other foods. Avoiding all of them is close to impossible when eating out in restaurants or friends’ homes. I find the social aspects of this situation really challenging.

    A post-script to my daughters’ stories is that I had my youngest daughter (now 13) tested and she also is positive for non-celiac gluten intolerance. She fully embraced eating gluten and dairy free to alleviate her own vexing GI and skin symptoms. Dear Husband also agreed to be tested, learned he produces antibodies to gluten and gave up everything but beer –he just can’t go all the way despite a patch of eczema that never goes away. The more I learn about what symptoms can be associated with gluten intolerance, the more I believe my older daughters’ severe issues are likely related to gluten (my daughter with bipolar has had recurring skin issues including an intensely itchy rash and GI issues like being very underweight and having regular bouts of unexplained vomiting; the other daughter has a chronic, significant cough and recurring incidents of peripheral neuropathy). But they are now in their 20s, out of my purview and, while supportive of me and their sister eating gluten free, do not want to consider that gluten might be affecting them too. That is another aspect of being gluten free that I find hard–witnessing loved ones’ unwillingness to consider gluten as the culprit behind the chronic issues they cope with. I have had to develop deeply spiritual approach to witnessing their continuing symptoms and accepting their choice to not investigate gluten as a cause.

    One more thought in this very long missive: I love all my sources of online support like Shauna’s inspiring blog and books, all of which have been essential to me on my gluten free journey. And also want to put a plug in for the real-time face-to-face support offered in gluten intolerance support groups. I am one of the founding members of ours here in Marin County and encourage every one to search out that kind of connection in your community.

  201. kelly curto

    You’ve heard the phrase “pay it forward?” I am the oldest of four and by the time my sister was born, we were sick all the time, slept a lot and were allseverly undweight and labeled “failure to thrive” I was nearly seven and weighed an astonishing 38 pounds and was slightly taller than a four year old cousin. I had a hard time in school, while my brother had the disdended belly, exima and horrible mood swings. My sister had a milk intolerance and brittle bones while my dad had belly pain, mingranes and diarhea. My poor mom spent seven years going from doctor to doctor, one accused her of munchhowsen (sp) by proxy, before she found a gastroingterologist who took one look at us and said “celiac”. My mom was flabergasted that all she had to do was eliminate the gluten. Within two days, she had chipper, vibrant children and I remember about a week later she was crying with joy. Our hair was lush, our eyes bright and we were all happy. It wasn’t easy though, because no one had heard of it, so I got beat up in school for it, but don’t regret it because I don’t think we would have lived long or what kind of life is that?! I grew up in southern california, so it wasn’t too hard, lots of great mexican and oriental food. My favorite childhood memory is after we went on the diet we were told only to eat what my parents gave us and if someone gave us something to bring it to my dad and he always had candy. We joined CSAUSA and the first lunch we went to had five tables of food. My dad turned to us and said “you can eat anything you want” you should have see our faces, we ate for hours! Living here in the South is a totally different story, everything is breaded and has gravy and you are the smallest person in a good square mile. So when you ask for something without it they just roll their eyes. I was in a church that hadn’t heard of it so stayed pretty low profile for over a year. Then, we called a new pastor that had four children, he was always sick and thetwo year old was always complaining of stomach pain. I asked his wife if it could be celiac? The dr hadn’t even suggested that and whad do ya know, that’s what it was. He was about to have his gall bladder out, was forty pounds underweight and was going to have to take a leave of absence. So all of a sudden I am like a super star and the go to girl, another family has since been diagnosed, and no longer a freak. Kinda nice! So I am grateful and no longer quiet and meek about it. It is the best when non gf people are eating food I made, see me eat it and all of a sudden are like, “holy cow I didn’t even reaize it was gf!” My husband is the best guinea pig and my biggest supporter, it can be hard at times but it shows you who your friends are! I have people that haven’t invited me over because “its too much trouble” and friends that are on a budget and buying crackers and things so when I came over I had something to eat.

  202. Megan

    I was just diagnosed a few months ago after years of pain — the last year which was the worst.….it started with stomach symptoms: constant gas, bloating, constipation no matter what I seemed to be eating.…towards the end I got the dreaded brain fog and was losing strength/muscle…I suffered from malabsorption and gained weight. My face/eyes got puffy and bloated. I got very depressed and was scared out of my mind since no one was able to figure it out. I was scared I was no longer going to be able to run, bike, travel, etc.…I finally got linked up with clued-in doctors and am now thankfully on the mend.…

    I was also diagnosed with hashimotos around the same time (looking forward to a big time blogger blowing the lid off the underreported problems around diagnosing thyroid disease and treating it properly — its mindblowing!)

    I am noticing that I eat a ton of fruits veggies meats and fats. I do better in general without grains but am rather pleased that its “trendy” now to be gluten free as it makes it easy for me to eat out in Chicago. I am eating much less refined foods out of necessity. I am never tempted to cheat as I view it as poison. People who suffer from severe acid reflux do not look at a hot chili pepper and say “oh man, wish I could eat that, just one little bite”…its the same for me.…one little bite might not even make me feel different but I know what it’s doing to my insides and it’s just not worth it.

    I actually have friends that are somewhat jealous that I am gluten intolerant. It pretty much takes the whole “willpower” thing off the table. I am not tempted to order dessert and have no problem turning down free office cupcakes and what not. I eat really good whole foods and am feeling much better. I think I eat more “paleo” if you have to categorize it and am feeling the difference. It IS expensive as I am picky about the quality of meat I consume: has to be grass fed humanely treated hormone free etc. It’s worth it though.

    Convenience wise it’s not always easy. I just keep nuts and lara bars stashed at my desk and in every purse I own in case I get stranded. I’m learning.…plus I love to cook and am looking at this as an opportunity to get creative and tweak my favorite recipes. I am up to the challenge :)

    n

    1. Nicoly

      I like your post, you sound a lot like me in regards to outlook and being up for the challenge! Thanks for sharing!

  203. Sarah

    I was diagnosed with an allergy to wheat about three and a half years ago in the midst of completing my dissertation. I had gotten migraines since I was a little girl and gone about treating them the normal medical way, but one fine October day, I came down with “the worst headache of my life”–that’s a real medical symptom and usually indicates something pretty scary. My head hurt so badly that I couldn’t sleep and it made me cry, which made it worse. And it wouldn’t respond to ANYTHING. Finally, at 11:00 pm I called the doctor on call and he told me to get to the hospital post-haste.

    I wound up spending the next 7 hours in the emergency room with my husband at my side-; the doctors were afraid I was having a brain stem hemorrhage, so I had a CT scan that proved to be negative, and this was followed up by a spinal tap–those are NOT fun! Meanwhile, I’d been dosed up with so many drugs–ones for the pain, ones to counteract the effects of the pain drugs, the treatment for this, the antidote for that–and none of it worked. I was in dopey agony. They finally diagnosed me with a “non-responsive headache” and sent me home still in pain, but now unable to walk a straight line either. That headache lasted 9 days and the recovery was over a month, during which time I couldn’t do anything for more than 45 minutes without having to go back to bed.

    After a follow up appointment where I was told that my only options for managing my headaches were to take a prophylactic dose of either anti-seizure or anti-psychotic drugs daily forever, I decided there must be another way–these would treat the symptoms, but not the causes of the headaches. And they would make me stupid. My husband found a holistic MD who ultimately diagnosed me with the wheat allergy and told me to follow the celiac diet. Within a week I was back to more than my old self, and three and a half years later, I still don’t have headaches.

    But it wasn’t only the headaches that stopped–my skin cleared up, my asthma went away, my ears stopped ringing (I’d had tinitis as long as I could remember), I no longer got abdominal cramps when exercising, and I could stay awake all day without a nap for the first time EVER. But most exciting of all, after 15 years of marriage, my husband and I finally had a perfect, beautiful baby boy. I thought I was just getting rid of headaches, but in reality, my life transformed.

    1. Kathryn

      OMG — I used to get a lot of ringing in my ears and I hadn’t noticed it had gone away. I never associated it with wheat/gluten!!

      1. Megan

        I did too — it’s virtually gone away. I don’t think people realize how much gluten affects more than just your GI tract. Crazy. It’s almost like a bad drug.

    2. Christa

      It’s awesome that going off of wheat helped you so much. So happy that you were able to have a baby! :)

  204. Mary Ann Reynolds

    I saw your post on Facebook, read it, got into the comments, and knew I had to tell my story. It’s long, so I made it a blog post. Here’s the link: http://wellbodymindheartspirit.com/2011/05/18/on-becoming-gluten-free/

    (Now I can just steer people here to want to hear the story!)

    I am 58 and started my GF journey 5 years ago with the candida diet. Feel so much better now!

    I’m also a blood type O, and there may be a high correlation between type O, candida overgrowth, and gluten sensitivity. If you’re an O and gluten-intolerant, I’d love to know. Also if you’re another type and gluten-intolerant! Thanks!

  205. erin

    I’m not sure when the general feeling of nausea started. It had certainly been going on for a couple of years; once I said “My stomach hurts” at work, and my colleague said… “Your stomach always hurts.” He was right. My stomach always hurt. I was always always always nauseous. I don’t think I realized how often until someone pointed it out. But I blamed it on stress — on working two jobs — on not eating enough some days and eating too much on others. I have been overweight (and dieting) for as long as I can remember; food was a struggle even when I wasn’t sick.

    It got a lot worse. I went to Chile with my family, and got the most horrible case of food poisoning I had ever had. I was in bed for a day, and suffering for two or three more — pretty much subsiding on crackers. I got back to a quasi-normal-nauseous state, came back to the US — but I was still throwing up. For the next six months — I felt like everything I ate I would throwing up. I had some bathroom issues — to try and put it delicately, I didn’t know which end of the toilet to use — and I started learning where the restrooms were at every store I shopped at. I was on weight watchers at the time, and could never attempt to eat all my points — a.) I wasn’t hungry, and b.) I would just vomit everything I ate. I thought I might be allergic to tomatoes, because that seemed to cause the strongest reaction (and looking back, this makes sense — because I would generally have pasta or pizza with my tomatoes.) I was also so, so tired — the only time I have ever been that tired was when I had mono. Getting out of bed was extremely difficult, and I fell asleep basically as soon as my head touched the pillow. And then there was the emo-stuff — I would cry at anything. For no reason. I remember one day sobbing at work, having no idea why I was even crying, which made me cry harder. Oh, and my favorite things were the burps — these noxious, smell up the house burps that would happen all the time. I was driving with a friend on a two-hour trip, and I burped (silently) — he told me to roll down the window. I obliged, and he laughed — saying that he was teasing me, there was obviously a skunk that had been killed. I burped about an hour later — and he commented again on the skunk smell. I was mortified — and told him “Nope, that was me again.” He turned to me and said — “You’re really sick. You smell like you’re dying inside.” Yep, that’s what I had tried to tell everyone!!

    I was diagnosed about 6 months after I started throwing up everyday. I was obnoxious; I don’t think I would have been diagnosed, but I wouldn’t drop it. (Would you, if you were that sick?) One doctor told me I was a hypochondriac, one told me I had Polycystic Ovarian Syndrome, one told me I was bulimic. (Uh, no. Pretty sure I wasn’t doing this on purpose, thanks.) Several didn’t have an answer at all. One finally got back to me with the idea of Celiac — but she said that it only occurred in young children. Mind you — I was going to a medical group that has a Celiac Center onsite, and I was still told this. Once I was referred to my gastroenterologist, even then it wasn’t an easy diagnosis — my gliadin tests were always in the ‘gray area.’ I did have the gene, however, so they went ahead with the colonoscopy and endoscopy, and Celiac was confirmed.

    It’s so great that you are doing this post, Shauna — because symptoms ARE so different. I’m plus size — have been forever — and I find it extremely difficult to lose weight. I was in weight watchers, throwing up everything — and I gained 6 pounds in that 6 months. People have remarked that Celiacs are skinny, that the diagnosis usually comes after rapid weight loss — nope, not for me. I was still malnourished — my iron levels were extremely low — but the weight kept coming. Just because people may not fit the ‘normal’ symptoms of Celiac — it shouldn’t be ruled out.

  206. Carolyn

    Gluten Ataxia
    It started with the usual gastrointestinal symptoms.
    Then, fatigue, confusion, word finding difficulties
    Then weakness on one side of the body. Attacks of inco-ordination of all muscles, including for speech, breathing and eyes.
    Now disability and unable to work.
    BUT a gluten free diet has prevented progression of the illness, which is normally neurodegenerative

  207. Keri Travis

    I have to contribute something my six year old son said (he five when said this)
    “I think I’m allergic to bread. It makes me feel sick. It doesn’t want to go down my throat and it makes it hard for me to go poop.“
    Since then we have all gone wheat free, and I am quite sure it was doing some crazy things to me as well. Skin is improving, bloated belly going away… better energy.
    Thanks for the blog!!

  208. Laura B. Russell

    It took a long time to pin down my gluten intolerance; bizarre neurological symptoms prevailed. Facial paralysis, numbness, nerve pain, and pelvic pain were part of my daily routine for a good long while. One visit to a naturopath (and cutting out gluten!) changed my life. Read the full story of my symptoms here, if you’re interested: http://www.laurabrussell.com/?bio=gluten-free

  209. LD in PDX

    Joint pain (hands, elbows, knees, neck, back…), mood swings, fatigue, after a heavy gluten meal (wheat pasta, biscuits, rolls,etc.) I would go into black out sleep mode on the couch, bloating, “talking tummy” and really bad PMS. These things only show up if I have gluten. Absolute misery! I am type O negative with a whole bunch of funky alleles.

  210. C. Janelle

    I have a lot of the symptoms of celiac: gas/bloating, intestinal upset and pain, diarrhea, constipation, depression, fatigue, irritability, joint pain… The list goes on and on. For a while, I thought it was just my gallbladder, but since I had it out in February, the only thing that has stopped is the pain from the organ itself. And after reading this post, I’m starting to realize that my pain tends to start not too long after I eat food that contains gluten.

    Is it possible to have a false-negative celiac test? When they went in looking for ulcers before they realized that I was right and the pain was my gallbladder, they took a bit of tissue from my stomach to do a celiac test. Is that less accurate than a blood test? I don’t know whether I should go in to ask my doctor for a blood test or just try going gluten free. (Which, in my house and with my schedule, would be rather difficult. The only GF bread sold around here is dense, dry, tasteless brown rice bread, and I don’t have a whole lot of time to bake my own.)

    1. Nicoly

      I would definitely push for the blood test but keep in mind that if that comes back negative you could still be gluten intolerant. I wish I could bake for you. I’ve found the most amazing cookbook on GF baking and haven’t missed gluten one bit in my new diet. My friends and family can’t even tell that what I’ve made is gluten free…I’m talking cupcakes, crepes and bread! I hope you get a diagnosis nailed down soon. When you do go gf, beware of the sneaky places it hides…

      1. C. Janelle

        I wish you could bake for me, too! XD I love to cook and bake, but finding the energy to do so is another story entirely. I took the plunge today and went to Whole Foods to find myself some gf staples, and I’m going to try for two weeks without gluten to see if anything changes. If it does, I don’t think I’ll care so much about an official diagnosis. I know my body well enough to know when something’s wrong. (I knew from the very beginning that my pain attacks were caused by my gallbladder. It just took the doctors six months to get around to confirming it.)

        This website is a huge help, one way or another. I’m determined to bake my own gf bread since I’m never really satisfied with anything commercially made. (Udi’s isn’t bad, it just seems to suffer the same fate as all the other gf breads I’ve tried: it’s terribly dry.) It’s just a matter of finding the extra money to get everything I’d need. XD

        Thanks for the support. :) I’d love the name of the cookbook! I definitely wanna pick up Shauna’s cookbook, but I’d love any resource I can get my hands on to make this easier on myself.

  211. Pétra (Creative Mom)

    Wow so many story’s all different but then so similar. I was diagnosed with celiac disease 17 years ago when I was 25. I had been to India prior to my celiac flaring up so although I told my doctors my father had celiac disease everyone was convinced I had a bacteria or parasite. I had horrible digestive issues that eventually led me to taking medication to get me through work. I was so anemic I almost needed a transfusion, my hair was falling out, and I dropped tons of weight that I didn’t need to loose. Finally a naturopath diagnosed me and I started feeling better as soon as I got rid of gluten. I was lucky that I was diagnosed relatively quickly only experiencing more severe symptoms for 4 or 5 months.
    My daughter who is now almost 7 started having horrible colic, rash, and poops that ended up being green foam when she was at her sickest all before she even started solid food. I was already gluten free so I cut out dairy which didn’t help that much. Finally we had her tested by a naturopath and she was sensitive to dairy, eggs, gluten, banana, and soy. I cut all of that out of my diet, I don’t remember what I was eating but it wasn’t much, and she finally was better. As she got older my husband would slip her foods she wasn’t supposed to have and she would start to get a rash or gassy. We had her tested by a allergist when she was 3 who confirmed everything but soy. Then we had her tested again at age 5 and she had outgrown all of the sensitivities. I was skeptical but she has done well after slowly adding everything back into her diet. I have kept a close eye on her and know she might develop celiac disease someday but it’s been almost two years and she’s been great.

  212. Allison

    At 23, I had no symptoms I could feel, but my mother had been diagnosed two years earlier and insisted I get tested. I was completely shocked when the test was positive, but testing after my diagnosis revealed that I already had osteopenia, and in retrospect I realized that I had had some of the more subtle celiac symptoms– tingly fingers, frequent heartburn, bloating after meals with lots of bread. The transition to gluten-free was abrupt and difficult– how do I go to parties? How do I travel? How do I hang out with friends? How do I celebrate holidays? How do I eat out? How do I eat at all? Four years later, it’s honestly no big deal– it’s occasionally a hassle (and sometimes I REALLY miss bagels!), but for the most part, being gluten-free is so second-nature I barely think about it except to realize how mindful I’ve become of the way I eat, how much easier it has become for me to ask for things I need– whether about food or otherwise–and how much more sensitive I’ve become to the needs of others. For me, being gluten-free is more preventative– I could never forgive myself if I developed serious health issues I could have prevented by not eating gluten — but it’s taught me a lot…and made me a MUCH better cook!

    1. Vanessa

      Udi bagels are more delicious than most other “normal” bagels. They won’t replace small-batch, boiled and baked goodness…but they will curb a craving. I always keep them in my freezer.

  213. Terry

    These are amazing stories! My symptoms: Rashes, bloating, headaches, numbness in hands and feet, very foggy thinking, insomnia, fatigue, swollen joints. Lovely, eh? Does anyone else have trouble with irritated runny eyes? My granddaughter had a very swollen tummy, never slept well and terrible bowel problems starting at 6 months. Her mommy, a physician, started searching for answers and at about 15 months figured out that it might be gluten. A test revealed antibodies off the charts and a possible genetic link. Things began to make sense for my son and myself. I have not had a blood test and so “cheated” a little from time to time until March 2011 when I had a terrible bout with symptoms. GF since then and plan to stay that way. I feel so much better and as someone said–pizza or a piece of bread just isn’t worth it. When I stayed with my son’s family in Massachusetts I could eat everything in the house because none of it contained gluten. I understood Shauna’s feeling when she realized that Danny’s restaurant was GF. It was wonderful! And liberating. Eating in a restaurant with GF menu is amazing and fun.

    1. Erin

      yes!!! I sneeze and am a hot mess if I even breath the stuff. My eyes swell shut … it’s kinda like a pollon allergy or something

  214. Catlady

    I had no intestinal symptoms at all. I had my tonsils out at age 4 due to chronic tonsillitis, had repeated bouts with sinusitis and bronchitis throughout my childhood and teens and was diagnosed with asthma in my 20s. In my late 20s/early 30s, I started having weird swelling (hives under my skin) and terrible joint pain. I was also diagnosed with Hashimoto’s thyroiditis. I also had problem with occasional anaphylaxis (throat swelling shut) I went to 2 different allergists who couldn’t diagnose me. I tried a 3rd allergist who did intradermal testing, and she diagnosed allergies to soy, rice and squash (exactly what I had been eating for dinner the past month) I also had a full-body inflammation and a positive rheumatoid factor. Going off of those allergens helped my joint pain go away, so I never went to the rheumatologist. Five years ago, my wonderful GP, after taking my family history (Gma with Hashimoto’s, late-onset type 1 diabetes and stomach cancer, mom with similar stuff) tested me for celiac. I am non– celiac gluten intolerant. The antibodies were supposed to be below 45 and mine were 152. Two years off gluten, I noticed that my sinuses were clear and my asthma was gone. I used to be able to have gluten occasionally, but now if I have it, I am congested, constipated, tired, itchy and really tired. I’m so glad my doctor tested me-I feel so much better now!

  215. Catlady

    I should also add that my allergies to rice, squash, and soy seem to be gone now, too. It does seem like wheat was the underlying problem.

  216. Sarah

    I had joint pain, osteopenia, anemia, and too many neurological problems — all without anyone being able to diagnose a cause, just treat the symptoms for about 14 years before I was diagnosed. I finally lost 50 lbs and had 45 days of diarrhea before someone thought to send me to see a gi doctor. I was lucky in that my gi listened to my history and my complaints (constant fatigue, stomach pain whenever I ate, always bloated, etc) and immediately said “I am pretty sure you have Celiacs Disease”. The blood work came back and my results were off the charts, two weeks later I had a bioposy and my villi were completely flat. Now I see a neurologist who specializes in Celiacs patients and for the first time I feel like someone actually believes me even though my MRI’s look normal, it’s been a life changer.

    1. Tracy

      So glad you finally found the answers you needed and helpful doctors. Who and where is that neurologist who specializes in celiac patients?

  217. In the kitchen

    Wow. I’ve read through all the responses and I can’t believe how much in common all these symptoms are. I thought I was just… weird. I am not feeling so alone now. And feeling like I can stick up for myself a little more against all the well-meaning aunties who just want to show their love by feeding me, insisting on feeding me, not realizing that semolina is wheat, that rolling out garbanzo-bean chapatti (that they’ve gone to great trouble to make just for me) in a dusting of wheat flour will make me very sick, that gulab jamon does indeed have wheat flour in it — it’s not fried cheese only like they swear it is while trying to shove it in my face. Oh, dear, the broken hearts and the frustrated aunties. Does anyone else have these problems and fights?

    Symptoms:
    The slightly sad thing is that my parents were told by the doctor when I was a baby that I was allergic to wheat. But somehow that information got left behind or something because I was raised on general home-cooked American food — pies, cookies, brownies, sandwiches, pasta, pizza, toast, shredded wheat, cream of wheat…
    Chronic ear infections,
    debilitating migraines,
    chronic swollen tongue,
    constant sores in mouth,
    distended belly like a pregnancy — especially when fruit was thrown into the mix,
    stabbing pains in stomach when hungry,
    constipation — so much so that the doctor proscribed a gallon of water a day which hurt my stomach even more.
    Later in life I had to have a hemorrhoidectomy my intestines were so swollen, my tongue had dents all along the side of it from being swollen — also a mark of malabsorption. And the worst was I stopped being able to breathe — I had to make my lungs expand and contract to get any air. I had very little patience with my students, and I was really low on energy and over weight. (And I was considered the healthy strong one in the family!!! Everyone else has autoimmune disorders or cancer or both. Me? Strong as an ox.)

    How it got figured out? I started cooking Indian food — a binge that went on for a couple of years — and my mom and I felt a lot healthier. When I didn’t cook… nose dive. My mom put two and two together and went and got tested for food allergies. Turns out she had a major wheat intolerance/allergy. Me too.

    I felt much better pretty much immediately after stopping eating wheat. What a relief. It was great to have my tongue stop swelling, it was great to be more calm when handling my students’ normal-if-irritating behaviors. And can we talk about the no-more migraines! That’s like being let out of prison. But I really felt fantastic — really really fantastic — when I went to India for two years. Other than fighting with the aunties over what is and isn’t wheat, I felt really great all the time for the first time ever. Thrive! I was thriving. Returning to the States has been difficult. I am sick — not as sick as I was — not by a long shot. But I got so used to feeling really really great that it feels rotten to feel less than that. In comparison, I feel ill. I’m not knowingly eating any wheat but something keeps getting me. My tongue swells almost immediately when I eat something wrong, which seems to be every other day, and I am loosing energy day by day. I’m not sure what is going on but it is really depressing. Makes me want to get back on the plane to India so badly. The only thing I can figure is that I am, for a couple of months, staying with friends who are wheat-eating folks, before I go to my next teaching assignment. Could it be cross-contamination? Or maybe something else? (The US is really difficult with all the additives in what should be straight forward food.) Are there things I should watch out for living with wheat-eaters? I already figured out that I can’t toast GF bread in their toaster. And I can’t wash the dishes if it includes the pot their spaghetti was boiled in — not if I want to actually breathe at night. Is the fridge a problem? Any help would be great because the pain and the loss of energy is demoralizing. Many thanks. It’s been a tough transition.

  218. Katy

    As a baby our daughter had horrible colic. She would scream for 6 or 7 hours every day for the first year. At age 2, she all but stopped eating food and was drinking up to 80 ounces of water a day. She had dark circles under her eyes, would throw epic tantrums, and had rarely had a normal bowel movement in her life. She would go from constipation to diarrhea to constipation to diarrhea. She was 99th %-tile for height and around the 25th% for weight. She wasn’t FTT, but she was so thin that it was worrisome when she got sick. She simply didn’t have any weight to spare. She was also speech delayed.

    We were very lucky — our pediatrician’s adult daughter had been diagnosed with Celiac a few months prior, so she was very familiar with typical and atypical symptoms. Our time from recognizing that something was horribly wrong (the excessive water intake / rejection of food was our tipping point) to diagnosis was around three months.

    Our child is now 6 and is doing great. In a lot of ways the GF diet has made her grow up faster. She reads labels and is very responsible about avoiding gluten. She rarely feels sad or left out because of her diet. Still, I wish that every birthday party didn’t revolve around pizza and cake.

  219. mel mccarthy

    I can’t tell you how much you inspire me. I’ve been having a difficult time eating gluten-free lately (despite knowing i need to, since I had food allergy testing at a naturopath). Of course, all the old symptoms came back: joint pain, muscle pain, headaches, fatigue, depression, stomach and deep intestinal pain (and the good ol’ diarrhea too) [LOL at your comment there. Boy oh boy, can you WRITE!], hives, hair loss, crazy itchy scalp, brain fog, sinusitis, an identical facial rash to yours in the photos (wild), and most of all guilt for choosing to make myself feel that way again. Somebody stop the g-f wagon! I need to get back on. ;O)
    But, I knew if I came back to your blog that you & the chef would be the best gentle reminder. You make me feel worthy and motivated again. Now I can get back to it… with the help of making your recipes again, I get back to feeling good about food. Thank you for the ineffably wonderful guidance and goodness that you both share.

  220. InTolerantChef

    I realised that things were bad when my work mates started calling me ‘Bugs’, I asked why and they said it was because I always seemed to have whatever bug was going around and it would hang on till the next one overtook it.
    I had no idea about gluten intolerance until I went on a no carbs diet and suddenly felt fantastic! I thought it was because I was losing some weight, but when I finished and started eating normally again I just got worse. I worked one day a week at one stage and it took two days in bed to recover. I would consider it a win if I just made the bed.
    I played around with my food, and finally pinned down gluten after terrible terrible cases of the runs everytime I ate it. I went to the Dr and his advice was ‘just don’t eat it then’ I have since found a nice one, so I started learning from scratch.
    My whole life has changed.
    I have been struggling with this forever, and am so happy to be me now. I no longer worry that I’m emotionally unstable– at one time a very real concern of mine, my physical and emotional well being is amazing. I love being a chef and educating others about this issue. I make really great food, and it helps them to see it doesn’t have to be restrictive at all.
    I hope others can find strength in this too try and change their health too. They derserve to live their best life. Let’s change the world, one gluten at a time.

  221. Angel Cutsforth

    I got half way through these stories before I started crying thinking about how you where all talking about what I’ve been through… what I’m going through.

    I always had stomach issues as a child, I’d get the worst “stomach bugs” according to the doctor. One of my stomach glands got infected and I eneded up in hopital and at the age of 16 I was told it could be IBS. I’ve also always had cold sores (fever sores) on my lips and face… sometimes even spreading to my ears, since the age of 6 I remember having one at least once a month… if not more.

    Three to four years ago (at the age of 19–20) the stomach pain became chronic, my weight went up a bit and I was bloated… I looked three months pregnant. My cold sores improved but my gums started to feel like they where burning constantly… not canker sores but just swollen and painful. They bled when I brushed my teeth even with flossing and mouthwash. My dentist thought it was gingivitis but that doesn’t last as long as I’ve been suffering. I was falling asleep at 8pm every night exhausted.

    And then just over a year ago my mother was diagnosed with Celiac. The initial blood test came back negative and then the doctors did a endoscope to see that it wasn’t something else. It was Celiac All of the things she’s been through where suddenly explained so I started pushing my doctors for tests… the initial bloodtest came back negative (the apple doesn’t fall far from the tree). I spoke to four different doctors and they all refused to give me the test.

    One of them even went so far as to compare me wanting a celiac test to a woman testing if she has a chance of getting breast cancer and having a mastectomy. Idiot.

    I went gluten free on my own, I tried elimination diets and all it showed me is what I already knew. My body doesn’t agree with gluten. So I sent my mum an email with my symptoms and she took it to her doctor who had finally agreed to give me the test. So I’m eating gluten again, and putting ice cubes in my mouth to cope with the gum pain that returned, and ignoring the weight gain and generally feeling crappy.

    A lot of people who go gluten free and get better don’t go back to gluten for the testing. I have because even if I don’t have celiac, and it’s just gluten intolerance I want to know for sure that I was right, and I want for somewhere in my medical file for it to be written my symptoms and test results so that maybe other people will be helped by it.

  222. Kathryn

    Amazing “before and after” photos, Shauna!

    I only discovered my gluten sensitivity after working out that I was very allergic to soy. (Very.) The first symptom of the soy allergy was when I had miso soup one day and suddenly couldn’t swallow. Not at all. It wasn’t a swelling in my throat like anaphylaxis, but as if my swallowing muscles were completely paralyzed. Very scary. Lasted for a couple of hours. The trouble was, I didn’t make the connection to the miso soup and thought I was having a panic attack or something. Took me about six months to pin that allergy down (until I had miso soup again!), but when I did it also explained why I had a feeling of a “lump in my throat” most days — soy flour and soy lecithin do that to me, and the feeling can last from 24 hrs to a week after eating a product containing soy. It’s a real pain since soy is in almost EVERYTHING nowadays, even chocolate! Luckily I’ve only had the paralyzed swallow reflex with miso soup — I don’t want to go through that a third time so I avoid that like poison!

    Anyway, that experience made me extremely sensitive about the food I was eating, so I had one of those allergy tests where they test a clump of your hair. The report said I was allergic to soy, dairy (yes, I knew those two), but also wheat, onions, sugar (huh?), apples, kiwifruit (double-huh?), tomatoes (oh no!), potatoes (argh), capsicum… Well, I thought my life was over! So many things I would have to give up if I was to take the test seriously… I decided to experiment by avoiding wheat, which was the next highest on my allergy results after soy and dairy. Wow, what a difference that made to my life… The rheumatic pains in my back, feet and fingers that I’d woken up with every day for the previous fifteen years disappeared almost overnight. My rhinitis (constantly runny nose) that I’d had since a young teenager (i.e. for over 30 years), dried up completely, like someone had turned off a tap. (So I didn’t have hayfever after all, and there was no more need to carry a tissue with me everywhere any more). No more unpleasant & smelly gas (sorry, is this a food blog?). No more bloated stomach. No more swollen fingers to stop me putting my rings on in the morning until about 10am. And I lost about 12 pounds without even trying.

    Through my new-found connection with my body and diet, I also discovered that the extremely sore mouth and tingly tongue I use to get regularly (that had baffled my doctor), was related to certain foods I was allergic to.

    All I can say is that our modern diet, and the heavily-subsidised producers (soy, wheat, etc.) sure have a lot to answer for! Someone else in these comments mentioned the paleo diet, and I guess that’s what my husband and I live on nowadays but I didn’t know it was called that — and we’re very happy on it!

    1. Erin

      Theo chocolate is soy free … can’t speak for the rest of the ingredients if they’d fit your diet, but it is good chocolate. and yay! no soy (:

  223. Jaayimee

    I’ve had about every symptom that you can get for over 15 years. They really went wild after I gave birth to my daughter. I went from doctor to doctor trying to find out what was wrong with me. It took 15 years for a doctor to say “let’s test for celiac disease”. I had never heard of it before. When he said I had it and needed to go gluten free I said “what is that?” The problem for me is that while a lot of symptoms went away I now have long term illnesses that I will have to live with because I went so long being undiagnosed but I am greatful to have had a lot of other symptoms go away,

  224. Sandy Davis

    Let me just start by saying your blog and website rock!! I have been recently (1year) diagnosed with Celiacs after suffering for 15 years or more. It took a wonderful new doctor to look beyond my skin to question what was wrong with me. While I have been diagnosed with IBS, that is not my main problem. I have Hashimoto’s Thyroiditis, which is still out of control. I have gained over 75 lbs and lost a lot of my hair.. THAT is still not my main symptom. My skin is. For most of the last 15 years I have been covered, usually about 80% of my body, with horrible rashes that make me look like a burn victim. My hands and the soles of my feet have been the worst with cracks going to the bone. I know this sounds insane but about 8 years ago it was so bad and I had seen doctor after doctor and given every cream and dose after dose of steroids, I was completely at my end. I searched out a doctor who would amputate my hands and feet. I know this sounds crazy but I couldn’t use my hands at all and I had to crawl everywhere. I was in such horrible pain I would rather have my limbs cut off than live with them. The doctors were of no help and I was completely hopeless. Thank God I somehow made it through those years. I have been gluten free for almost a year now and I fell like I am alive again. Most of all I have Hope. I recently fell off the wagon and had a bad gluten day. I am paying for it right now as my arms are again covered with burn looking patches the size of my hand. BUT!!! I am so grateful that now I know what I need to do to live in my own skin :)

  225. Emily

    At the age of 15 I was taken to a GI due to horrible stomach pains. He told me I was lactose intolerant. Fast forward 11 years later…stomach pain, intestinal problems, and cramping followed me DAILY. I was DONE accepting that living with painful (and embarrassing) stomach pain was my “normal”. I happened to meet a friend who has Celiac, which led me to think “this could be me!” So I found a new GI, asked for Celiac testing…and sure enough…that’s what it is! I was nutrient deficient, had a bit of bone loss…but the fantastic news is it is all reversible.

    I am so much more aware of what I put in my body. I know the ingredients of everything I eat…and that alone makes me feel healthier and wiser. I’ve been officially sans gluten for 8 months now, and to live without pain is surreal and spectacular!!!

    People without Celiac don’t seem to fully understand what a life-changing discovery it is. Thank you Shauna for your amazing blog, recipes and attitude!!!

    Emily

  226. Nicoly

    I was diagnosed exactly one month ago with Celiac and today is my 19th day of living Gluten Free. My diagnostic journey started last July when I suddenly had heartburn so bad that I was sure I was having a heart attack. Several visits to my primary Dr. later, he was convinced that my gallbladder was causing my symptoms (they were pretty classic) but nothing was showing up on a blood test or ultrasound. I persisted and at times thought he must think I’m just some hypochondriac…I’ve felt like this for a long time, constantly going into the Dr. for weird muscle/joint pain or seemingly random issues and they always tell me there is nothing wrong with me. It got to the point where I did not tell anyone, not even my husband, how bad I was really feeling. I didn’t want to be THAT person who is always complaining about feeling bad when nothing is wrong with them. My symptoms list was long…chronic diahrrea and constipation, anal fissures, muscle aches, bone aches, joint aches, headaches (started to think I had fibromyalgia), tingling in my hands and feet when nothing was cutting off circulation (fun to wake up with in the middle of the night), sores on my scalp, hypothyroid, irregular periods, excessive shedding, extreme heartburn, fatigue, brain fogginess (thought this was just because I’m a Mom of two but it was getting worse and I was feeling stupider by the day), blurry vision, stomach cramping, late miscarriage (12 weeks), infertility, dark under eye circles…etc. And then there was the depression…I couldn’t explain it, I knew I should love my life. I have a supportive, loving and sexy husband, two beautiful children, supportive friends and family and live in a gorgeous little harbor town but I just felt so unhappy. Well who wouldn’t when you feel like you are dying a slow death and you are only 37? In February my Dr. referred me to a Digestive Specialist for a upper endoscopy to look for another cause for my heartburn since my gallbladder kept appearing “fine”. The Dr. told me when I woke up that they didn’t find anything to cause my heartburn but noticed that my villi looked extremely atrophied and showed evidence of Celiac Disease so they biopsied it. Even when the biopsy came back they only presented it to me as a possibility and my Docs advice was to experiment with a gluten free diet. I tried for a week, didn’t feel better so assumed that Celiac wasn’t my problem. They didn’t tell me until late March that a simple blood test could confirm Celiac and when those results came back I was off the charts. STILL they didn’t even call me with these life changing results but sent me a notice that my lab results were “strongly positive”. Baffled, I called them and they informed me that I definitely had Celiac disease and needed to go gluten free but also that the Hide-a-scan I’d had earlier that week to test my gallbladder showed that I had a very underperforming gallbladder and they recommended removal.

    So now I’ve been gluten free for 19 days and I haven’t noticed any major difference yet. I have not had as many bowel issues but the heartburn rages on — could be gallbladder related though. I realize it will realistically take longer than 3 weeks for a lot of these symptoms to go away (although switching to Kirkland’s sulfite and gluten free shampoo and conditioner cleared up my scalp!). What is hard for me is everybody constantly asking if I’m feeling better and feeling the pressure to say “oh yes, much better” just so that I don’t have to explain it all to them. I know they are all just concerned and want me to feel “normal” again but it takes time from what I understand. I’m hesitant to have my gallbladder hastily sucked out because what if the gluten free diet solves that? My surgeon is very supportive with me taking the wait and see approach but I’m a little worried that if the gallbladder is causing some of these symptoms and I don’t have it out that I won’t truly know when I’m feeling better from being gluten free! I’ve internalized so much of what I’m feeling because I don’t want to burden those around me with it but I find now that when I hear of another Celiac/gluten intolerance/gluten allergy patients struggle, I cry. It just feels so relieving to to relate to another person at this level. I picked up a book for the newly diagnosed Celiac and it was life changing and hope inducing. Thank you for this blog and specifically this post. It is so nice to not feel so alone in this. I know it will only get better from here and I am full of hope for my future!

    1. widowspider (Rachel )

      Stick at it! And don’t feel bad in telling people ‘I’m getting better, but it’s a long road’. You’ve been unknowingly making yourself ill for YEARS. The kind of damage you have will take months to drastically heal, but believe in all the stories you are reading that it does make a difference and you must make your health a priority. You are not burdening those you love with expressing how you feel — they want you to be well, I’m sure. Sounds like you have had a lot of emotional toll from the undiagnosed Celiac, so that too will take time to lift. So give yourself a break, and know that you are on the road to true health.

  227. Jeanne in Massachusetts

    I have severe gluten allergy. I had pains in my chest, what I called getting stuck. It just felt like nothing would go down my esophagus, for at least two hours. I would make myself vomit to help alleviate the pain. Nothing worked. I would end up on the bed in tears and pian with a pillow against my stomach to help with the pain so I could sleep. Went to a doctor who did and endoscopy. He basically said that my esophagus was having intermittant spasms and there was nothing he could do and that I had to live with it. These attacks didn’t happen often at that point. Once every five — six months. So I lived with it.

    About six years ago I got three attacks in one week. I freaked out and called my PCP, she referred me to an internist, who told me to call immediately when I had another eposide. I did and the next morning I was in the hospital getting another endoscopy done. He found a hiatal hernia, H-pylori, and I was having a bad hives reaction in my esophagus. Because of the hives he sent me to see an allergist, where I was immediately diagnosed with a gluten allergy, tested for celiacs, and all sorts of food allergies.

    No celiacs, and I finally had a reason for what was happening. I have been on a strict gluten-free diet, but when some ignorant server, even after I’ve told them about the allergy, puts something in my meal and I have a reaction, it’s gotten worse. Now not only do I get the hives, my throat starts closing and my lips swell. What fun! Luckily I’m married to a firefightere and he knows if it’s a bad reaction and if I need to get to the hospital. I carry an epi-pen, which I’ve not had to use yet.

    I also have an iron overload disorder. While most people are anemic, my body doesn’t get rid of the iron that is in foods, and I have to get phlebotomies (blood donation basicall) started out every two weeks and is now every two months! So not only do I have to avoid gluten of any sort, but I have to watch out that what I eat isn’t fortified with iron, like cereals or naturally ironed, like red meat, green leafy vegetables, beets, etc.

    Even with all that I feel the best I have ever felt in my life. My depression is gone, although my doctor wants me to lose more weight, although I don’t think it’s that bad, I told her that it was all the additional fat that is added to many gluten free products to give them taste.

    My SIL has severe migraines and has trouble putting weight on and I asked her if she’s ever been tested for Celiac, and she said that the doctor just poo poo’s the idea. I told her to insisit on it!! When will some doctors realize that they DON’T know everything???? And for them to be open to other possibilities?

    I love this site and it’s helped me try some new things that I thought I didn’t like! Keep up the great work Shauna — and I love my cookbooks!!

  228. widowspider (Rachel )

    It’s amazing how all these stories have so many similar elements. I am a self-diagnosed gluten intolerant, and even recently was having one of those ‘is it in my head?’ moments. Reading these comments reminds me again that it is not.

    I didn’t have many stomach problems as a kid/teen, but I had terrible knee problems which were unusual for a healthy, active, normal-weight 16 year old. I had x-rays done of my knees and the rheumatologist just said ‘I think your cartilage is a little soft, you’ll grow out of it’. 10 years later, I still had those crippling knee pains whenever I ran up stairs or tried to do any lengthy high-impact exercise. I wore knee braces to do sports my whole life. I also had bouts of anemia and chronic fatigue.

    As I got into my mid-twenties, I unconsciously developed a habit of rubbing the spot at the bottom of my ribcage, where I always had a tight, painful feeling — especially after eating. Over time, my digestion got worse and worse but because it was kind of gradual, I didn’t really pay attention and did what a lot of people do — convinced myself it was ‘normal’ to feel constantly bloated, constipated or running to the bathroom with diarrhea, tired, terrible gas, aching joints, and almost two years of gynecological problems including chronic and constant yeast infections. I was miserable but not connecting all these health problems to one source, when my husband got a colonoscopy and a couple of blood tests done after having a recurring dull pain in his side. He came back as having a slight sensitivity to wheat, and he looked at me and said ‘maybe it’s wheat that is making you so ill’. He was really worried about me for some time, because my digestive problems had become much worse over the course of about six months. I started doing some research and chanced upon this website, which was like a light being switched on in my head. I decided to do a two-week trial diet, excluding wheat, to see if I felt better. If not, I was going to try excluding dairy. Within three days of cutting out wheat, I felt like a different person. It took me a further 8–10 months to really come to terms with, and embrace, a completely GF diet, but since I did I have never felt better. The hardest thing for me to give up was beer — Guinness in particular, which I adore — because even though you can get GF beer these days, it’s not so easy to wander into a pub and order a pint. But I have realised that feeling well is so much more important than any food or drink, so I’m now totally GF and feeling better for it.

    If I accidentally ingest gluten, within 45 minutes I have a stomach swelling up like a balloon, gas (of the room-clearing kind), occasionally nausea (if I really ate a lot), uncontrollable burping, and three days of constipation followed by the exact opposite for a day or so. Not fun. Luckily it doesn’t happen too much anymore, but when it does it’s a good reminder.

    Thank you Shauna, for being a constant source of encouragement and inspiration!

  229. Ceste

    stomach issues my whole life…I can remember moaning on the couch as a kiddo w/ tummy pains. Every1 in my class would scatter like dominoes if I got even close to bending over cuz they knew I was AGAIN going to throw-up. Didn’t get properly diagnosed until college. By then I had developed multiple allergies. First sugar, then gluten, then dairy, then randomly weird things like cantaloupe, tomatoes, red meat, etc. By the time I graduated from college, I pretty much was bedridden. I couldn’t digest anything w/o throwing up or being constipated. I was avoiding everything I was supposed to avoid and still the tearing sensation like a knife in my intestines. Finally saw a naturpath and slowly she was able to give me supplements to clear out all the junk that had been rotting in my intestines for so long that I was unable to digest. I went from 172lbs to 125 lbs. And still the pain continued. Then a friend of mine recommended the GAPS diet according to Dr. Natasha Campbell-McBride’s book Gut & Psychology Syndrome: the Natural Treatment for ADD, Depression, Schizophrenia, Autism, etc. I cut out ALL grains and poof! Suddenly I was having bowel movements. I was hungry, I ate, I digested. It was like a miracle. More icky die-off came out. My skin lost all its scar tissue from the yrs & yrs of scarring acne. I’ve been on the GAPS diet now since ’09 and still am in the intro diet stage of it all. I lost some momentum after picking up a parasite in ’10, but I am confident that I will soon be able to eat normally again (w/o grain). I have been able to digest red meat, poultry now since ’09.…I had only been able to digest fish for 6 yrs so being able to digest real meat is still such a treat for me. I’m no longer a carb freak. I crave protein. I wake up happy everyday. The cloud of depression that I lived under for 27 yrs has finally been lifted. The effect of food rotting in my tummy overnight and encasing my brain in fog has greatly decreased. We are still working on slowly pulling out the heavy metals as my body releases them. And the parasite is finally on its way out.

  230. Shosh

    I’m so surprised by how many ppl have commented about being Celiac and also having Hashimoto’s. I was just diagnosed with Hashimoto’s Thyroiditis — can someone direct me to info about the connection between the two? I’ve been reading this site anyways for years, but now I’m thinking of seriously cutting out gluten.

  231. Joy Sacalis

    Thank you Shauna. Pictures don’t lie.

    My son has been gluten free for many years. It started with neurological complications with Lyme Disease and his alarming ’ late onset autism symptoms’ and severe violent outbursts. Between the ages of four and seven he turned from normal behavior to autistic savant. He had Lyme disease with brain encephaly but with lots of detective work I realized that just antibiotics weren’t addressing the entire problem.

    With the gluten and casein free diet he slowly healed and eventually was able to do things that kids do like tae kwondo (he’s a third degree black belt) and go away to college and graduate.

    Like many of the stories here ours is complicated. I avoided gluten because I realized I felt alot better, but I cheated, a nibble here a bite there. Big mistake. Three years ago I ate a bowl of barley and wound up in the emergency room in severe pain and an alarmingly low iron count, a stomach ulcer, and a very high white blood count. It took me a long time to recover from that bowl of barley. Although the gastro enterologist who did the biopsy said I didn’t have celiac disease, I ‘m not sure I believe him. I decided to pay attention to my own body and how I felt with different foods. I’m better now and strictly gluten free. Although it would be great to get a diagnosis, I’m not going to go into denial about the havoc that gluten plays on my body, the body aches, the depression, the extreme fatigue, the brain fog, the flu-like symptoms, the constipation… Whatever you call it, whatever name you give it, we still get sick. We, my son and I, avoid gluten like the plague because we get sick, in different ways.

    I always look forward to greater clarity about what it is called but most of all am content with being healthy and happy.

  232. Jessica

    Thanks for sharing your story! When I started changing my diet I even switched to a gluten-free Himalayan pink salt (from Sustainable Sourcing https://secure.sustainablesourcing.com. They have their own facility so there is no cross-contamination) and I could not believe what a difference it made!

  233. terya

    March 2010, I went into labor with my youngest son 7 weeks early and he had not yet turned (breech) and I needed an emerency C-section. I was leaving the hospital 3 days later and had a raging case of diarrhea. The diarrhea continued. I went to my local Accute Care one day with my hands locked, un able to move, with my thumbs pushed into my palms and my other fingers bent inward at the second knuckle. I was told to drink Pedialyte as fast as I could. I went to the hospital ER and got IV fluid and was sent home. No one could tell me why I was having diarrhea 20–30 times a day or how I could stop it and by this point I had also begun vomiting, even if I hadn’t eaten. This was 2 months after that first bathroom visit in March. I had lost a lot of wieght and was very weak. I was sort of putting it off on having a new baby who was up for frequent feedings, I was breastfeeding and had a 16 month old and a 15 year old. I was busy. and obviously , tired. Oh, add in a flaming case of hemmoriods too, from the diarrhea!
    Finally, May 10, 2010, 2 1/2 months. Apparently I began to slurr my words a bit and was having visible trouble speaking (I don’t remember that). My husand took me to the hospital. Thank God for the ER nurse and doctor who were there that night. They tested my electrolytes among many other things. They could see through the test results that my electrolytes were so off from the diarrhea that all of my bodily fluids and actually become toxic to my body. They were even suprised that I hadn’t gone into cardiac arrest.I spent 11 days in the hospital, had lots of tests about 30 doctors, a pick line (that developed a blood clot!), a liquid diet for days!
    Ultimatly what my body did was turn on itself after the truama of either the C-section or just the delivery. My small intestine began to pull all the liquid it could get from all other parts of my body to flush itself out, to get rid of what was harmful. As it filled up it would come out as the diarrhea and it also backed up into my stomach, hence the vomiting. I had lots of IV’s, lots of tests and a total of 380,000.00 in hospital billing (I also thank my insurance company!) I had given birth to my daughter in 2008 and had diarrhea for about 6 weeks but it went away, it just didn’t go away this time.
    Looking back I recall from a very early age, 8 or 9, digestive issues. Mostly gas, lots of bloating and sometimes pain. I always had lots of energy, didn’t have trouble concentrating. But I was always very thin. No matter what or how much I ate, I just didn’t gain wieght. I now carry 8–10 pounds more than in my gluten days. It’s like having someone else’s body now. New weight, new shape, new feeling. Some of the odd things that have changed are my hair has gotten darker and I have lots of new hair growing, I even have a small, strage patch of curly hair and all my other hair is straight as a board!
    So now I’m on the GF path. And really watching my kids for any sign. maybe I’ll just test them. I don’t know. But I’m alive and I feel good. And I am Thankful.

  234. Jenn

    It all started with the hives, then the feeling as if I was 80. I went from running marathons to struggling to get up a flight of stairs without fatigue and pain. I hurt all over; I was tired, I was chronically sick. My friends used to joke that I should stop licking the poles on the bus; I was that frequently and seriously ill. I finally convinced my family doctor to send me to an allergist. I failed the skin prick test. Not that I wasn’t allergic, my body couldn’t even react to the histamine — 10 vials of blood and other body products, ultrasounds and x-rays and nothing came up with why I couldn’t get out of bed. I turned to my best friend’s boss (a retired family doctor), handed him all my tests and his response, without seeing me was get off gluten and see an acupuncturist. I did both, and I am still gluten free. I run marathons again and have gone a year with no illnesses. To me that is my answer. I know that there are those who say I should be tested, to those I say, talk to my boyfriend who has spent a night awake with me after an accidental ingestion of gluten. He will tell you it is real.
    I would like to thank you for letting me feel like my intolerance while not necessarily celiac is still valid. There are days I feel like saying I’m intolerant to gluten is to someone who doesn’t have it, like saying I don’t like gluten — just because there isn’t a name for it doesn’t mean it doesn’t affect me.

  235. Christa

    Here’s my 3-year-old son’s summary of his wheat allergy journey:
    “When I was 1 and 2, I didn’t know I was dallergic to wheat. When I was 3, I pooped and pooped and pooped and pooped. Then I didn’t eat wheat anymore.“
    My husband and I are also allergic to wheat, so it’s not surprising that our son is. He has adjusted well to eating “gooten-free”. It has helped with the dark circles under his eyes and the eczema. (I suspect that there are other allergies in play as well.) In his superhero world, he views wheat as a type of kryptonite and is happy to avoid it. We do have to make sure we bring along snacks that he can eat…but one day we forgot and he was perfectly content to have an apple while everyone else ate brownies.
    I had to stop eating wheat because of candida…and then I tested allergic to it and didn’t go back. If you suspect that you might have food allergies, natural practitioners tend to be more willing to test for and recognize them and use non-invasive methods of testing.
    I agree that eating gluten-free means not eating the same way you did before you stopped eating wheat. Most of our evening meals are composed of meats and veggies and we’re happy with that. I do bake dessert, though. :)
    Thanks to the Aherns’ great tips on this blog, I started baking with their whole-grain (healthy!) flour mix and weighing the ingredients. It comes out great every time! My son loves the lemon-poppyseed bread!

  236. Vanessa

    I was diagnosed with CFS at 20, fibromyalgia at 21 and despite having all bloodwork come back negative for thyroid disease, have managed to always be overweight and groggy all my life. Almost 3 years ago, I did an elimination diet and found out that I cannot tolerate wheat in any form. I can tolerate rye and barley without issues, so I know it is not full-blown celiac but it’s just so much easier to go completely gluten free (with the exception of one of my favorite teas that contains roasted barley).

    Before going gluten-free, I had minimal energy and relied on naps and caffeine to make it through my day. I gained almost 100 lbs on an antidepressant right about the time I was diagnosed with CFS and fibromyalgia. I regularly suffered from IBS, brain fog, extreme lethargy, chronic stomach cramps, frequent heartburn attacks, stomach bloat, an almost constant state of nausea, chronic constipation (despite being properly hydrated and eating salads every day and supplementing with flax meal), skin problems, and other hypothyroid-like symptoms.

    After going gluten-free, I have enough energy to get through my day without caffeine and power naps. I also have an easier time actually working out. My skin has never been clearer. I also have discovered a sensitivity to SLS, so switching to natural soap, shampoo, and toothpaste helped with the skin issues as well. I lost 18 lbs within the first 3 months of going gluten-free where nothing else (even running for 45 mins 4x per week and swimming for an hour 3x per week) had helped. Not counting calories, not working out…nothing. Now, I can lose weight by traditional means (exercising, making sure I eat enough but not too many calories, etc).

    Going gluten-free gave me back my health in a way that nothing else was able to do. Yes, if I regularly went to a chiropractor, I felt better. Yes, if I ate only organic foods, I felt better. Yes, if I went to the gym every single day, I felt better. Yes, if I regularly took high-quality supplements, I felt better. Going gluten-free made me feel better than all of those “healthy” habits combined.

  237. Debby

    My husband was diagnosed several years ago. He’d been having cold sweats and feeling faint while using the bathroom a few times. Lost a lot of weight quite easily.….. Then one night he woke up with leg cramps so bad, and was standing in the bathroom peeing, and I came in to see what was wrong.…he crashed against the wall, and I ran to catch him.…I thought it was a fatal heart attack.….his family has had several deaths from this.…He was out cold, and I started my version of CPR.….after a week in the hospital, running heart tests, and performing heart cath. he was sent home. And told he was severely anemic.… A month later, he went in for colonoscopy and they did a biopsy.…tada Celiac!

    His color is normal, his iron levels are good, feels better, but did gain 45 lbs. back he has lost.

  238. Nancy Jo

    I really appreciate this sharing. Thank you. I also would like to share what I have found to be an important consideration for those of us with gluten intolerance. It is the importance of having a healthy gut(digestive system) and good flora that promotes absorption and elimination. Healing the gut and cultivating good flora has begun to take me even further then being just gluten free.
    I have participated, studied several profiles and basically have been adjusting them to fit my life style and taste buds. Here is the one I found (and I do have a medical background that has always pushed me to study nutrition and the microb influence) that has offered the most complete, thus far, process for healing and cultivating a great healthy gut:
    Gut and Psychology Syndrome(GAPS) further adds onto SCD(Specific Carb Diet) by Dr. Natasha Campbell-McBride, MD. It may seem over whelming at first, but soooo worth it.
    Any one with all these challenges around gluten would benefit from her knowledge. It is a serious commitment to bring ethical eating that increases the quality of living more in balance. So now I say “chew the meat and SIP the bones”.. happy journey, happy eating

  239. Sara

    I was diagnosed with epilepsy a few years ago and we have never been able to get it under control. I just continue to have to get my medication increased and am currently on what my neuro considers the max of two different ones.

    I also have fibromyalgia, developed arthritis when I was in my early 20’s, can’t recover from car accidents, have nerve problems remaining from my pregnancies, have diarrhea regularly, have memory loss, physical brain damage (possibly calcification) that we don’t know if it is from the epilepsy or not, have balance problems, have the worst periods of anyone I have met (10–12 days and heavy enough I can’t leave the house for several days), I get what have been called “suicide headaches”…headaches that can lead to suicides…where I have to pretend I don’t have 2 kids and hide in my bedroom for ages till I can function again, I have TMJ as well, I am constantly tired too. What almost bothers me the most is that I have tinnitus. I have had it for quite some time now, it isn’t from having damaged my hearing with loud noises, I have always been careful about that. Lately, it started gradually getting worse so I went to an ENT who gave me a medication that is supposed to make it better. That made it bad enough that I was unable to sleep for almost 2 weeks. I am now on sleeping medication and still don’t sleep well in spite of using 2 sleep machines and a fan on high along with the medication.

    I went off gluten for 2 months at the request of my neurologist. I didn’t notice anything major for the most part except I started realizing I wasn’t feeling quite so tired. Then a miracle happened the second month. The first time since I can remember I had a period that didn’t turn me into a hermit! It was actually only 4 days long where it was anything major. I was in heaven. Right after that I had to go back on gluten for 4 weeks to get tested and that day I realized how much it actually had done for me when my joints felt as if people has shoved hundreds of pins all through them and as if they had all swollen to 20 times their size. I was exhausted and miserable. I have a diagnosis now and today is my first day back off gluten. I am excited to hopefully even be able to lower my amount of seizure meds after I’m off gluten for a year or so.

    1. Sara

      Oh, and I’m sorry…I forgot to include dates.

      I had my first seizure Nov 28, 1999 and was diagnosed with Celiac May 18, 2011. Through that time I have had more MRI’s, EEG’s, CT’s, blood draws, and doctors actually saying “well that is just weird, I’ve never heard of that before” than I could imagine. Looking back, I think I’ve probably had mild symptoms for close to 25 years…2/3 of my life. Oh, and I have PVC’s (premature ventricular contractions), forgot that too. I have too many symptoms to remember. =)

  240. Kelly

    5 yrs ago I got really sick. It started with a rash on my legs, which was diagnosed as Henoch-Schonlein Purpura and progressed to blood and protein in my urine. I had severe diarrhea, was anemic, had high cholesterol, terrible joint pain, etc, etc. I had great doctors that practiced integrative medicine, but it was my own research that suggested IgA Nephropathy. And I was right. I also had them test for celiac, but it came back negative. After a few months, my symptoms settled down, though I continued to have a lot of protein in my urine and visible blood if I ever got an upper respiratory infection. I went to a nephrologist every 6 months, took blood pressure medication for prevention of kidney failure and to reduce the protein spill (which made me lightheaded, b/c my blood pressure was normal without it.) It always bothered me that no doctors were interested in finding out why my immune system was going crazy and how to stop the reaction so I didn’t progress to kidney failure. I also always suspected a wheat allergy due to symptoms and family history, but doctor after doctor told me that I didn’t have one. This past fall, my hair started falling out, I got really fatigued and I started having terrible pain in my knees. I thought my thyroid was freaking out, which it was, but celiac kept coming up again in my research as being related to thyroid issues and IgA nephropathy. Gluten intolerance explained so many weird symptoms that I had. Symptoms that my docs always blamed on the kidney disease: hair loss, cracks at the corner of my mouth, peripheral neuropathy, joint pain, diarrhea, embarrassing loud rumbly tummy, terrible menstrual cramps, depression and anxiety, low Vit D and B, and on and on. I decided 6 months ago to go gluten free and stop bothering with trying to get a diagnosis.

    all. the. symptoms. are. gone.

    best of all? last month I went to my nephrologist appointment and the protein in my urine is within normal range after being 50 — 500 times the normal for the past five years. (High protein is a predictor of future kidney failure with IgA nephropathy) My nephrologist, of course, thinks it’s just a coincidence. But hell if I care. It’s my body and I feel fabulous and I don’t want to go on dialysis just because my doctor thinks going gluten free and having normal kidney function for the first time in 5 years is a coincidence.

    Trust yourselves!

  241. EstherBee

    As a newborn/infant, I never reached a “cherubic” weight, although I nursed a lot. According to my mother, I’d feed, spit it all up, and then feed again regularly. That was “normal” for me.

    I was a scrawny child with a “sensitive stomach,” low immunity to illness, and a slew of environmental allergies. We always wrote off my regular bouts of diarrhea and vomiting to being susceptible to stomach problems. I thought it was normal to have several bowel movements a day. My father (who was finally diagnosed with celiac at age 65) and his mother had sensitive stomachs as well. We knew nothing about celiac, and nobody tested any of us. We just accepted that bad stomachs ran in the family.

    Just before my 13th birthday, I was severely injured in a car accident. Though we didn’t realize it at the time, that was the incident that started to fully wake up my celiac disease. For the next 20 years, I had monthly “stomach viruses” which lasted anywhere from 3 days to 2 weeks. One of those left me dehydrated and hospitalized. By the time I was 19, I had bouts of severe pain which nobody could figure out. I had 2 surgeries to remove adhesions resulting from the car accident, but nothing alleviated the pain or the “viruses”. By the time I was 27, I was making trips to the ER for morphine about 3 times a year when the pain was too much to bear. Life kept throwing curveballs at me (bad relationships, infertility, divorce, dad having a massive heart attack) and the pain kept getting worse.

    By the time of my diagnosis in January, 2006, I was taking percocet regularly to take the edge off the pain. And when it got too severe, back to the ER for morphine. I was regularly bloated, had rashes on my stomach that would not go away, weeping rash on my scalp, and dealing with chronic pain. I had been constantly tested for lupus, lyme disease, endometriosis, depression, you name it. Secretly, I prayed that I could just be diagnosed with SOMETHING that could be treated.

    Finally, a wonderful doctor sent me to a gastroenterologist, Joel Gottleib, who happened to intern with the amazing Dr. Peter Greene (now my celiac doctor). He ran the celiac panel on my blood and did a colonoscopy and endoscopy. He gave me the gift of a diagnosis that has changed my life in the most wonderful ways. He gave me the gift of a healthy life!

    Interestingly, my family’s immediate reaction was that I couldn’t possibly have celiac. Although they accepted that some friends of theirs were, they couldn’t accept my diagnosis. Much easier to see it in other people than in your own family. Nobody wants to have an autoimmune disease. But they finally came around, and my father (who I had said was celiac as soon as I was diagnosed) received his life-improving diagnosis last year.

    Since my diagnosis, I’ve had very few complications. I had an h pylori growth, which meant 2 weeks of tetracycline (and having to stop nursing my daughter at 13 months). My general practitioner doesn’t think my intestines will ever mature (he compares them to an infant), but that doesn’t pose any dangers. Rashes are gone, as is the pain. If I get glutened, they all come back with a vengeance for 3 days or so. I’ve returned to my normal body type, skinny but strong rather than bloated and lethargic. Best of all, I rarely get sick at all anymore.

    Also since diagnosis, I’ve also given birth to 2 beautiful, healthy, full-term children. More women need to realize that infertility and celiac disease can go hand in hand.

  242. GM

    Hi everyone,

    First off, thank you for a wonderful site. I have been reading new posts and systematically going through old ones since I discovered it. I do not know what I have, but I know it is connected to gluten and this was self-diagnosed. I had been dealing with chronic constipation and constant bloating for years. Occasionally I would be able to use the washroom but it was random. My family doctor for years said eat more fibre, drink water, exercise, eat an apple and an orange a day, have metamucil. Nothing would help. It took him four years to send me to a gastroenterologist who after a short scope told me the same things. This year, over the last few months, the symptoms were getting worse, and more painful.

    I got around to seeing a naturopath who suspected sensitivities and put me on a liver cleanse and modified elimination diet for 3 weeks. I cut out all animal dairy, wheat, gluten, corn, soy products, beef, pork, eggs, tomatoes, grapefruit, alcohol, and caffeine. Within 4 days I felt amazing, I had never felt better in my life and I was no longer constipated. I am now in the process of reintroducing foods.

    I never suspected gluten as I had recently a negative blood test for celiac. Plus I didn’t eat much that contained gluten aside from my hot cereal and soy sauce.

    Last Saturday morning I reintroduced gluten in the form of 100% rye bread (wheat-free). This kind of bread is very dense and almost sour, not very pleasant to eat on its own. So I thought instead of eating it like toast I thought I would make it into a breakfast. I poured almond milk over it, heated it up, and mashed it into a porridge with some fruits and maple syrup for breakfast. But after a couple of bites my stomach churned and I began belching non-stop. It was insanely difficult to eat my breakfast and immediately after eating I was running for the washroom. My stomach did not stop churning all morning and at one point I was curled up in a ball on the bed. I tried it again a few hours later once the pain subsided (just milk and bread) . My stomach bubbled a bit but I did not get much of a reaction that second time. What I did notice is that all day Saturday and Sunday I felt off. I was so exhausted that I actually napped. And I don’t nap… EVER. I was passed out for solid hour and a half blocks at a time and when I wasn’t napping I was sure feeling as though I was falling asleep. I was extremely moody as well and these symptoms carried through to Monday. I am still a bit bloated and do not feel fully recovered.

    I am sure this is indicative of something, and for the sake of not feeling that way again I have and will continue to strictly exclude gluten from my diet.

    Thank you again for this wonderful site, it has been so very inspiring and helpful. I love cooking and cannot wait to try out your gluten-free recipes!

    GM

  243. nicolette @ momnivore's dilemma

    In April 2010, I placed my son Moose on a GFCFSF diet to combat his autism. I decided to do the diet to support him. His autism truly blessed my health and the health of the rest of my family.

    My migraines cleared up within weeks. I suffered with chronic migraines from time I was eleven years old. Now, they are a memory. I wish I could get all those lost days and nights back that gluten took away from me.

    A few times within the first few months, I cheated. And I paid dearly for it with migraines and nasty GI issues.

    Being gluten-free did open up a can of worms for me. After more testing, I came up highly reactive to egg, corn, soy, and dairy as well. For a period of time, I was on a rotation diet.

    For those who are having these issues, being GFCFSF, etc. isn’t enough.

    You need to focus not on GF substitutes, but what to put back into your diets.

    Healing the gut is paramount. Being grain-free is probably a smarter way to go to heal the gut.

    I am working on that this summer, possibly a GAPS/SCD type of diet. I also am working to increase the amount of fermented foods in our diets to improve intestinal health.

    *Note my youngest son is also GFCF. He’s has no developmental concerns and is really thriving. Coincidence? I think not.

    I attribute it to his diet and supplement.

    For anyone with migraine, I was told red meat, red wines, nitrates, etc. when I was a kid.
    Boy, did those MDs miss the mark.

  244. Jasmine

    Gluten and Dairy Connection

    Wow! Look at all these responses! This is great.

    I have been thinking about why so many of us folks that can’t eat gluten also can’t eat dairy. And maybe this is already common knowledge among Celiacs experts, but if a baby can react to wheat in her mom’s breastmilk then why wouldn’t there be wheat residue in cows milk if they are being fed grain? And to take it one step further, perhaps grass feed milk would be so much easier to digest for this reason — which I have found is true for me.

    Thoughts?

  245. Kathryn

    I took a food allergy test 3 years ago after realizing I had felt like hell for well over 5 years and was getting worse by the day. It started with post-nasal drip and sinus congestion (yuk) that would not go away.…for YEARS. Then came the stomach problems — I would eat food and it would feel “stuck” in my stomach, not digesting and just sitting there for what seemed like days. I often explained it as having my food sit in my throat, and if I leaned forward at all, I’d throw up. I definitely had that foggy feeling and was terribly lethargic and would sleep all the time. After the allergy tests came back — BINGO — I had a list of over 20 foods I was allergic to. I immediately cut out everything — wheat, yeast, dairy, eggs, and seafood to name a few — and started to feel better after about 6 weeks. I stick to that very limited ‘safe’ food list to this day and will immediately get migraines if I eat anything contaminated with gluten/dairy/eggs. The best I’ve ever felt was following a GF vegan diet, but going vegan on top of the allergy restrictions is soooo very difficult to follow, especially when wanting to eat out.

  246. Ana

    What about the use of Acutane and gluten intolerance? I’m 60 years now and suffering from gluten intolerance and I was using Acutane for six months years ago. And since those years I’m having issues related to gluten.¿Do you have some information?

  247. MellyMel

    i’ve had constipation issues, and asthma and allergies since i was a baby — dr’s appts, mineral oil, perdiem gunk, you name it and i was given it to try to “force” evacuation — and don’t forget about the hideous menstrual periods and birth control since 7th grade — and it wasn’t until almost 2 years that coworkers were talking about taking blood allergy tests and feeling amazing after not eating the foods on their personal lists. So i did the same, and discovered wheat, gluten and soy as the most reactive foods on my list. After going cold turkey (vegetables and chicken and beef only), my sinus congestion and chronic cough (heard across the office floor) had COMPLETELY disappeared, the bags under my eyes were gone and so was my constipation. And my periods became so manageable, to the point of stopping birth control pills completely. Now when i ‘cheat’, i get bloated, moody, start coughing, sleep horrendously. I feel lucky I don’t have severe celiac symptoms, but know that I always feel better when i am gluten free.

    Now how can i convince my friends with all the allergy symptoms to give it a try?!?

  248. Liz

    Shauna, I haven’t been on GFG in so long (super busy, had my second baby in January, bla bla de bla)…but I got glutened this week so severely, and feel so awful — as awful as I did when I first went gluten free shortly after my then 11-month old daughter’s and my diagnosis, that I felt compelled to come back on here. We’d been getting prepackaged meals from a local service that has several gluten free options and I’m quite sure that’s where I got sick, since everything else I ate was in my home and I had eaten before with no problems. At first I got bummed that I would be losing this convenience, and I needed some inspiration, and I knew exactly where to go. Gluten Free Girl was the first book I read when I got my celiac diagnosis. I used to live in Pasadena, CA where the farmers markets had so much abundance, so coming to Austin TX the selection seemed so bare. But that’s the beauty of eating locally and seasonally, right? I’m hitting the reset button over here, hoping that this bout of un-well-ness passes relatively quickly (after the first four days of excruciating symptoms, I’m usually not quite right for a month to six weeks), and then that’s it. Back to what I love. Eating well, by my own hands. I’m a decent cook and food and the preparation of it turns me on as much as it does you and Danny — though I don’t dare to have the same level of skill! — and I’m ready to get back into being in charge of mine, and my family’s wellness, through something I was always passionate about. In fact, I’m known for it. None of my friends knew I was getting prepackaged meals, they’d all be shocked.

    Thank you for being there for me, so many times. I missed my kitchen. I need to heal. For me, the process of preparing food with love is healing. That’s why I love your blog, your books, your writing so much. Keep up the good work.

  249. Kristi

    As a child I had sore joints, mouth sores, stomach aches, headaches, low immune system, fatigue and depression (showing in low grades and shyness). As an older teen and young adult my symptoms worsened to include awful pms, and cramps that would disable me several days each month. I would spend weeks in bed with severe abdominal pain and weakness. Several times I was hospitalized for weeks of IV’s, since I could not eat, and various testing. As a married woman, I endured 8 miscarriages, chronic fatigue and fibromyalgia. In my late 30’s I was unable to eat and lost so much weight that at 80 pounds was given 3 weeks to live…which I am happy to report did not come to pass! My 2 children with Celiac both had colic as babies, had constant stomach pain that they thought was normal and were extremely thin..to name just a few of their symptoms. I am now in my mid 40’s and after my diagnosis 6 months ago, and gluten free outside of cross contamination, have none of the symptoms I have suffered from my entire life! My teen and adult children are all gluten free and have had miraculous changes to their health and lives as well. I am forever grateful for the day a new doctor said the words “I think you might have Celiac Disease”…and gave us a new life!

  250. Dana

    My daughter had colic as a baby, as another mother mentioned, and now we wonder if it was connected to celiac. At the time everyone said she was “normal,” especially since she was growing off the charts. Colic ended at 4 months but her sleep issues — rarely sleeping more than 2 hours a stretch — and cycles of stomach distention/bloating never did. Shortly before her 3rd birthday we night weaned her (hoping for more sleep) and several days later she came down with horrible diarrhea and a painful distended belly. After several weeks of what we thought was a stomach bug, we took her to the doctor and they sent us to the ER for x-rays. Days later we went to a GI and her blood results were 90% positive for celiac. She is starting to sleep for longer stretches, but that hasn’t been a magical turnaround for us in that regard. However, her vibrance, energy, happiness, and overall health improved DRAMATICALLY the day we all started eating GF. I’m thankful we figured it out early and fast. I’ve read that breast feeding can keep celiac latent in the body, which I find so fascinating. Obviously I couldn’t keep it up forever :) but it helped that my daughter was old enough to talk to us about how she was feeling. I think it got us a faster diagnosis than we might have if she was younger.

  251. Jess

    I am so glad I took the time to read the replies here, what an eye opener for me! I have been struggling with symptoms for years now and have not quite been able to put my finger on the problem. My grandmother, mother, and both my sisters have Hashimoto’s Thyroiditis, I have been sure I have it too, I have every classic symptom, but have yet to find a doctor who will diagnose me (they all live in the Midwest and I am in the PacNW). After begging my doctor to help me figure out what else it could be she tested me for Vitamin D deficiency, which I was. Taking massive amounts of Vitamin D didn’t help me feel better, it didn’t take away my dull but constant headaches. I started asking my doctor to test me for other issues to rule them out. She ran a blood test for gluten sensitivity and I was off the charts. And so depressed. I focused for a long time on all the things I’d miss; my fiance’s home-made beer, Christmas cookies, pizza…the list goes on. I “tried” going gluten free and convinced myself I didn’t feel any “different”. That was a year and a half ago and today I still feel “gross”. I’m irritable all the time, I’m tired and unmotivated, I can’t concentrate or pay attention to anything going on around me, I have been diagnosed with adult onset asthma, I have acne, skin rashes, and let’s not forget the constant and sometimes debilating GI issues. I eat gluten every day. After reading all the posts above I think it’s high time I took the plunge. I may miss out on great beer and pizza, but I’m starting to realize that the trade-off is going to be living a happy, healthy and positive life. So thank you Shauna for your beautiful words and delicious looking food and to everyone else who shared their stories. I am still going to crusade to have my thyroid issues correctly diagnosed and I am glad to learn there are others out there that feel like I do and that there is a valid reason for it. I look at this blog thinking in the back of my mind that I probably should just accept my gluten insensitivity, I’m so glad I kept reading it!

  252. Anne

    Never thought I’d leave a comment on a blog site but here I go: unlike most of the posters here — with the exception of being overweight, I’d been relatively healthy and happy my entire 30 years of life…I started out three years ago with the worst case of poison ivy EVER! Head to toe I broke out in a welted weeping itchy rash wherever pressure was applied (aka anywhere clothing touched.) Two cortisol shots and three rounds of prednisone and it went away. That summer I started my master’s degree and noticed that my hips hurt after sitting all day in the desks during lectures. The following Spring I noticed symptoms of Reynauds’ in my fingers, and my ears kept itching and when I saw a dr at the immediate care he said the ear thing was a chronic ecema condition-seemed surprised that I hadn’t struggled with ear infections my entire life…then came the pain. I was traveling for my internship and woke up with the worst hand and wrist pain…exactly what people describe as carpel tunnel…only, I wasn’t doing any repetitive motion activity. And from there… fatigue, I don’t know how to describe it…I remember going to check out my new housing situation for Summer…my roomate and I were house sitting in a two story 100 year old house…I saw the front steps on the porch and thought, “Oh jeez!” My brain told me…“That ain’t right — no reason a healthy 32 year old should feel like that looking at some steps,” but I ignored it. Then we went inside the house and greeting me at the entryway was a steep flight to the second floor where our bedrooms were…I thought, “I don’t know if I can do this — unload the car and get my stuff in here.” And then I knew something was really wrong. Up until this time I could ignore the symptoms and “power through.” I’d always prided myself on having a good energy level and stamina. No more. I knew it just wasn’t in me. I managed that summer despite numbness in my hands and fatigue and sudden lumps in my stomach developing, oh yes, and weight loss. I thought I had MS, or cancer, and hoped maybe it was lupus (at least people LIVE with that.) When summer was over I went to the doctor and we did a slew of bloodwork. Yup. Things came back wack — enough so that he placed a call to my house at 6pm and told me in no uncertain terms that I was to come in and see him the next morning. I thought, “He’s going to tell me I have cancer.” I braced for it, but no…nothing conclusive. He referred me to a rheumatologist. We did the same tests and more. Again, nothing conclusive…could be lupus…could be rheumatoid…could be…? By this time I’d started doing my own research. I decided to go organic and simple. It helped a little. I started having psoriasis. Then on Thanksgiving of this year I decided to really eat a “normal” Thanksgiving…BAM! I was down for the month of December. All my joints were swollen. I could not squeeze toothpaste out of the tube…dress myself…open a doorknob. The Rheumatologist put me on steroids and another med for arthritis. Even with the steroids and holidays (prednisone is infamous for making people get the munchies and gain weight), I was losing weight without working at it. Since spring I’d lost nearly 30 lbs. Before New Years’ 2011 I’d read about how allergens might effect inflammatory responses so I eliminated the big four voluntarily: gluten, soy, corn and dairy. Then I switched doctors and found a D.O. who was willing to run an allergy test on me. It took a while to get in with him but in the meantime, eliminating the big 4, I started feeling a bit better once more. About a month ago I got the results: DEFINITE allergy to gluten, rye, dairy, casein…along with sensitivities to a host of others. The BEST $200 I ever spent! I know most people feel like they got hit over the head with a sledghammer when they first receive results like that, but I felt like it was Christmas and I’d been handed the best present ever! FINALLY I have answers! Diet is something I have power to control — it’s not a disease that no one can help me overcome. I just found your site and I LOVE the philosophy/psychology behind it because it’s really how I feel about food. There is so much good to embrace! I’m not interested in processed alternatives — or torturing foods that were never intended to act like wheat to taste/behave like such. It does take a lot more planning/time to eat this way…but I observe my “normal” friends and their mindless chowing down on processed and fast foods…they know it’s bad for them but can’t seem to stop themselves. I feel blessed. I’m learning to transition in this new world: eating out, celebrations with others, travel, reading labels/interpreting them — I’m not going to lie, are hurdles and challenges. Yes, I am now “that person” who asks the waiter about the kitchen’s food prep and brings her own dish to the bookclub. But it’s also given me so much compassion. I teach preschool. There are so many children/families grappling with sensitivites/allergies. I have such admiration for you mothers out there who are vigilant in advocating for your child’s health. Lots of people just don’t GET it! It’s hard to try to explain that to a 3–6 year old when grandma, your neighbor, even your spouse and doctor think it’s “all in your head.” But just reading the comments here — so many people are suffering NEEDLESSLY. Eliminate the gluten! It’s a small trade to LIVE a life!

  253. Erin

    Oh my, this is so helpful! I see so many that are similar to mine … Cronic period pain since teens, I literally slept for this past year only taking showers, getting ready to go, eating breakfast then … nope, gotta sleep. I go into shock. Can’t move really, my husband has to pick me up and carry me to bed (doctors say i’m healthy and this isn’t possible) foggy head, weight gain, anxiety, severe depression … post pardum was hell!

    So i read a diet book that listed symptoms and chronic fatigue sydrom sounded just like me, but my friend who is Celiac, suggested I cut dairy, wheat etc. So I did an elimination diet for allergies, and I felt like a million bucks, my grass/tree allergies were even better. And then i went to the doctor to check and the blood tests came back negative. I thought I was crazy — no one told me I needed the stuff in my system for the test. She also said, when I told her of my amazement at NO CRAMPING during my period (seriosly an act of God!!) that “well, honey, I don’t know anything about that!”

    End story. Never been diagnosed officially. Have also found I have a severe reaction to too much processed sugar… anyone else? Also, have any of you had a Prolactin migrane? After both children, as long as I had breast milk (prolactin in my system) I had a constant migrane. As in debilitating migrane for months straight! … that’s when they can only feed you pain meds. It sucks. Has anyone else had those?? just curious if it could be related to my diet too. The doctors seriously thought I was crazy at first … and I hate that feeling, and even after had zero answers for me. It makes you feel so alone, and lost. Thank you to all of you for reaching out!! You’ve all helped me feel like I’m not nuts. (:

    1. Kate

      Hi Erin,

      I had a similar issue — though not as bad a yours — after the births of my two children.

      After my first son was born, I was no longer able to wear my wedding rings because metal gives me eczema, and then worse, after my second son was born, I wasn’t able to eat eggs. They gave me acute stomach cramps followed by vomiting and diarrhea. My doctor just told me to stop eating eggs and wait a few months. He told me he’d never heard of allergies happening after pregnancy and said i’d probably always had an allergy to them, and his face said ‘all in her mind’. Uh huh.…. needless to say that I changed doctors.

      You are not alone in this Erin and none of us are going nuts, it’s the rest of the world that are loosing their marbles .
      Hang in there and good on you for taking the leap of Gluten Free living. :D

  254. Cheryl

    I disagree with this: “There’s nothing wrong with gluten, inherently.” I, and a number of doctors and scientists believe that there IS something inherently wrong with gluten. Try this article: http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji Here’s an excerpt:

    “The pressure on the celiac to be viewed as an exceptional case or deviation may have everything to do with our preconscious belief that wheat, and grains as a whole are the ‘health foods,’ and very little to do with a rigorous investigations of the facts.
    Grains have been heralded since time immemorial as the ‘staff of life,’ when in fact they are more accurately described as a cane, precariously propping up a body starved of the nutrient-dense, low-starch vegetables, fruits, edible seeds and meats, they have so thoroughly supplanted (c.f. Paleolithic Diet). Most of the diseases of affluence, e.g. type 2 diabetes, coronary heart disease, cancer, etc. can be linked to the consumption of a grain-based diet, including secondary ‘hidden sources’ of grain consumption in grain-fed fish, poultry, meat and milk products.”

    As for a distinction between celiac disease and gluten sensitivity: it is simply a matter of semantics and time. As Dr. Kenneth Fine has written, waiting for intestinal damage to show up for a diagnosis of celiac disease is like waiting for a heart attack to diagnose someone with heart disease. http://www.finerhealth.com/Essay/

  255. kathyh

    I have most of the above listed symptoms and also had similar experiences with doctors telling me it was all in my head. Naturopaths were better –and one clue at a time — discovered I had amazing food sensitivities. This last year I have seen numerous specialists in order to 1. satisfy my sister who is in the medical field and 2. rule out other, more serious diseases.
    My allergist/immunologist at OHSU only practices food avoidance and basically said my two previous food allergy tests were garbage but could do another panel that would be ‘better’. My GI has actually been more supportive but after ruling out other intestinal stuff, she is baffled. One of the positive tests that popped up last year showed I am infected with Blastocystis parasite. Another test showed a huge deficiency in Vit. D. Supplementing with a much higher dose of Vit. D has led to better energy and way less brain fog. I finally had a doctor who tested for celiac’s last year (Never mentioned before) and the celiac test was negative– but by that time I hadn’t eaten gluten grains for four years and I had gone off all grains and legumes (Lectin intolerance) over a year before. So that might have skewed the test somewhat. My GI, while skeptical, is willing to proscribe certain antibiotics in an effort to rid myself of the Blastocystis.
    My advice: keep looking for doctors, keep an open mind, and listen to your body.
    I’m maintaining by following a very strict diet of a few vegy’s, few fruits and beef/chicken. Anything else sets off symptoms as my particular auto-immune disease progresses. At this point, my goal is to eliminate the blastocystis parasite and see if I get better or stay the same.

    Thank you Shauna for providing a site that makes such a positive statement. Let’s party.

  256. kathyh

    Oh — and my constant headaches — progressing into migraines later totally disappeared by avoiding soy, dairy & wheat — my three biggest allergens.
    A food elimination diet will help but a good food allergy test is paramount.
    Don’t forget that soy is in everything from shampoo to lotion to shelf stabilizer in chocolate (soy lecithen — go ahead and read up on this toxic by-product of processing soybeans).

  257. Christina

    My daughter was 2 when she developed itchy rashes on her knees and wrists and elbows. by the time she was 4 she itched so bad that she woke up in the middle of the night crying. A friend suggested going off wheat and by the end of the week she was sleeping through the night. The next day she went to a birthday party and ate a cupcake and the rash came back. She has been gluten free ever since and growing like a weed!

  258. erin

    I’m new to gluten-free. My naturopath has been advising me to try for years but I have not tried until now. I’ve had intestinal issues since childhood and was diagnosed with IBS/IBD 18 years ago (I’m 32) and a hiatal hernia 12 years ago. 8 years ago is when I was diagnosed with autoimmune thyroiditis which has been causing a long list of symptoms. No endo will treat me because it is considered transient and I have flipped between hypo and hyper more times than I can count. I’m currently hyper and have been for 2 years straight. The hyper symptoms are less tolerable for me than the hypo symptoms. I read a recent study about gluten intolerance linked to other autoimmune disease and that gave me the push to give it a try.

    For the first 4+ days of gluten free, I felt worse than ever and the fatigue was worse than ever before. But now that it’s been a couple of weeks, I’m feeling pretty amazing! I have no idea if I have celiac. I wonder if it’s too late to be tested if I’ve only been GF for a couple weeks? Regardless, I have autoimmune thyroiditis and my symptoms have dramatically decreased. The anxiety, hot flashes, joint pain, diarrhea, fatigue, brain fog, numbness in my arms/legs are almost gone.

  259. Simone

    I’ve done sugar free diets, meat free diets, and now the gluten-free diet. I haven’t been diagnosed with celiac disease or gluten intolerance. I just know my body reacts a certain way to foods. Gassiness and bloating every morning. It doesn’t help that I have abdomial separation from pregnancy — so the result is usually having to deny that I’m pregnant to strangers and acquaintances alike.
    I’ve been eating bread my whole life. In fact, my love affair with bread started when my grandma used to send me to the bakery to pick up the bread for the week, and I’ve been going strong every since. I was gluten/dairy free for a few days, lost my mind, and had Trader Joes’ Gourmet Jelly Beans, their chocolate covered caramels, and a 1/2 price vanilla bean frap. That night I had serious abdominal cramping and nausea. It lasted for a few days, then I went to see the nurse at the doc’s office who told me that I probably had a virus. I suffered for two more days before seeing the nurse practioner who told me my bowels were blocked. What a relief — literally and figuratively. After feeling like I was dying during that purge, I decided something seriously has got to change.
    I’m reading a comment above about miscarriages and I’ve had some of those. Now I wonder if it’s all related. One great side effect of changing how I eat is the lack of gassinss and bloating that usually greets me every morning. After reading these comments I am defintely encouraged to continue this journey.

  260. toni

    I really want to thank you for posting this blog especially your pictures. I have been off/on gluten free for awhile. I had horrible abdominal/stomach pains and my doctor suggested getting my gallbladder removed but I knew there was a better way. I removed gluten and realized that was the issue of all my problems. Since then I’ve slowed slipped up and occasionally have a “gluten fest” meal. I never thought much of it until after last night (gluten fest) I looked in the mirror this morning and my face looked like yours with gluten…puffy, dark circles, red/blotchy.…I realize that gluten does create all of the symptoms in me, even if I get “lucky” and don’t get the stomach issues. I am now going to do my best to be 100% GF!

  261. Sarah

    As long as I can remember (from childhood) I have had issues with blood sugar fluctuations. If I didn’t eat regularly, my blood sugar would crash, giving me a headache that didn’t go away, leaving me irritable (to put it nicely), shaky, etc. The only thing that would make the symptoms go away immediately was to overload on carbs (read: bread). I actively craved refined carbs every day. Bread, tortillas, crackers. A few years ago I did a cleanse and realized that with a few days of not eating carbs, I didn’t crave them any more, and my blood sugar felt more stable. I found this curious, and eventually discovered it might be due to gluten (which I hadn’t heard of at the time). I’ve been mostly GF for a year and a half, and strictly for about 9 months. Things I didn’t even realize were wrong got better once I stopped eating gluten. My mood has stabilized noticeably. I no longer go through cycles of depression. I wake up in the morning happy to greet the day. My exercise-induced asthma is improved, and running is actually enjoyable again. I don’t have any more problems with blood sugar. I never feel shaky, don’t get headaches from not eating. My head doesn’t feel foggy anymore. I’ve also noticed small changes in my appearance. I weigh the same amount as before, but my face and stomach look thinner. I think it may be due to less inflammation. Unlike some people who go GF, I continue to have acne, so I’m still searching for a cause for that.

  262. Becky Benson-Flannery

    So many people have written. I am tearing because they have taken control of their health and so many more doubt themselves because a doctor refuses to make the diagnosis as happened to me.

    Here were my symptom: severe depression, I weighed 95 lbs. at 5’6″ no matter how what I ate, osteopenia, a stress fracture of the pelvic bone, anemia, loss of period, horrible stomach pains and bloating–read: I felt as if I was being repeatedly stabbed, lactose intolerance, and, worst of all, hair loss that created bald spots (I doubt my sensitivity over this will ever dull). I am still hyper self-conscious about my hair six years later. I was in my twenties and I felt too skinny and ugly.

    I cannot tell you how thrilled I am that I forced my doctor to give me the celiac panel. Even after the panel came back positive, she still argued that I was anorexic and that was it.

    Today, I feel beautiful and I trust my body. For those who have not wrested control of their health, do it today…you will thank yourself later.

    Thank you, Shauna, for sparking so much thoughtful, poignant discussion.

  263. Saskia

    My 5 year old was tired, tired, tired. He always had diahrroea, he had such aching joints we took him to the dr — growing pains apparently!

    After about a million ear infections, we finally saw an ENT to have his adenoids and gromits done, and while I was there I thought I would mention his chronic tiredness in case it was related to sleep apnoea. My child was an incredibly restless and sweaty sleeper.

    He ended up going for a sleep study, and the results came back as no sleep apnoea. BUT he did have Peripheral Limb Movement Disorder (kind of like restless legs at night in his sleep — waking him up 4 times an hour, every hour while he was asleep!)

    Now, what does that have to do with Coeliac? Well, apparently PLMD is due to low ferretin (or stored iron). Why would my son have low iron? Well, let’s have a blood test and see. So the sleep physician did a massive blood screen for ‘fatigue’ and lo and behold came back with:
    – positive test for Coeliac disease
    – low ferretin (from malabsorbtion)
    – low thyroid function test results

    Since going gluten free, and supplementing his nutrition to make up for all those years of not absorbing micronutrients, his thyroid function is back to normal, his Coeliac markers are normal and his ferretin is normal. He is still skinny, but he poos normally now and that is a blessing too!

    Sas x

  264. Kate

    I was 14 when I first got sick.

    In a way I was lucky because I was a sports freak and suddenly not being able to walk or sometimes talk was very out of character. i.e not just teen angst.

    Symptoms — Weakness, not able to move some days (I got very good at finding patterns on the ceiling above my bed), pain in my limbs — felt like pain in my bones, brain fog which meant I couldn’t focus and when it was really bad I couldn’t even figure out how to talk, night sweats, insomnia, mood swings, migranes, depression, mouth ulcers, boils, stomach aches, blah blah, you get the drill.

    My symptoms were associated to a disease called Chronic Fatigue Syndrome — but only because the doc had know idea what was wrong with me and just wanted to give me a name so my mum would stop bugging her (I guess). Fast forward to 2002. I happened to read an article in a medical CFS magazine which mentioned taking Gluten out of the diet to help with symptoms. So I did just that. Then I found out that my aunt was Celiac and wondered if perhaps this was an issue for me.
    It turns out that YES it was, and I have now been GF for almost 10 years.

    Funnily enough, most of my CFS symptoms disappeared. I still can’t do an exercise work out, but I do have two very energetic young children and spend lots of nights being awake with their colds and reflux. The doc’s here in NZ won’t test them for Celiac until they are 2 or even 3 years old, so i’ll have to wait and pray that they don’t go through the pain I did. They already have it bad with other food allergies that cause eczema and gut pain.

    Well, here’s to GF and a big Hip Hurray! for Shauna and her wonderful beautiful family for helping us all keep sane and informed about GF food. (esp useful all the way over here in kiwi land)

  265. Elysabeth

    I had often been sick as child, never had the fever that would allow me to stay home from school but that apathetic, achey feeling you have with when you get the flu. When I got into high school I began to better verbalize my symptoms, my constant diareah, joint pain (I sprained two ankles playing field hockey and had a bum knee, it was unbearable), and what became an eating disorder. I’d go to the doc about once a month and every stinking time when I’d explain how I felt, she’d ask my mother to leave the room and ask me if I was pregnant. I was 15, raised in a good Christian home with a pastor for a father, frankly I found it offensive that for years the first question was, “Are you SURE you aren’t pregnant” and I’d stare and explain that I’d have to have sex for that, and since I was a virgin I couldn’t be, and could we please figure out why I was so very sick. I stopped eating anything but vegetables for almost a year. I felt better, until I passed out from over exercising. I had to start eating again and once again I was sick. A few years passed and I decided what I felt was just life. A year ago I went gluten free. The migrains that started in college disappeared. Debilitating depression, gone. ADD, gone. Joint pain, gone. There was a lot of worry that with a restricted diet I’d relapse and stop eating again, I bake all the time, I cook for myself and for friends, I eat regularly. I’m losing weight, I have more engergy. I even found out my pittie is gluten intolerant! My life completely changed when I went gluten free. It was easier than I expected, I’m never tempted to cheat. Forget that, no burger is worth the week of torture that follows.

  266. April

    I was fatigued, bloated or swollen, my stomach was upset and often “full” feeling when I ate. I had gotten so used to it that I actually didn’t know that it was happening until I read somewhere (I think some blood type diet information) that gluten and corn weren’t actually good for me. So for fun I stopped eating it and was shocked how much better I was feeling and that my stomach quit being queasy. Bonus! After giving it up I do feel better. I do still get tired sometimes, but usually just because I stay up too late now. It has been challenging when I am out and can’t always eat what everyone is, but I am at the point that I am not willing to sacrifice my stomach or the fatigue for the good food taste. I think once a year I cave and try something and it just isn’t worth it. I had cut out all grains but rice and maybe things like quinoa, but more recently my mother in law encouraged me to try oatmeal again since she had heard that it wasn’t “glutenous” and sure enough she was right, I can eat oatmeal which makes me super happy. My kids seem fine and don’t have a gluten issue. My son though has tree nuts and peanut allergies which actually makes some of this more difficult since a lot of gluten free ingredients are often “made in a facility that process them” so it makes buying some things a bit of challenge. I have found other things that work for me though so we are getting through it. Funny though is that my husband has food allergies and his are to all the grains, BUT wheat. Feeding our family is quite the interesting thing that is for certain. We get buy, but we have to consider food all the time in our daily living, when we visit people or travel anywhere. I don’t like that I have had to give food so much of my brain power, but it seems that it isn’t something that I can avoid. On top of it, it costs more to have to think about it and buy things in prep for it at time, but again, I am working through it. I am thankful that my 1/2 Asian husband loves rice, my kids do and me too. Always a great staple!

  267. nika

    It all started with the diagnosis of seasonal allergies. I felt horrible-cough, swelling, joint pain. The doctor said it was seasonal allergies. Put me on some otc meds and send me on my way. I got better for a bit-but never regained my strength. Like so many of the posters above multiple trips to the medical establishment-maybes-not answers.

    Finally I went to the rapid med clinic. A very nice old doctor there said “I have seen this before. It’s food allergies. I can do some tests, but when you are this inflamed it will tell you that you are allergic to everything-even things you aren’t really allergic to.” He recommended an elimination diet. Corn was the first thing that set me off. Like an alarm. So I cut out corn and corn by products. When I went to the grocery store I could not believe how much stuff they are in. High fructose corn syrup is in everything. So I was really shopping around the periphery of the store for the most part as most processed foods were out.

    I got better. That same doctor advised “Once you get one food allergy, they tend to snowball and compound-so every single time you are sick do an elimination diet and find out what it is.” Next came citrus and citrus products-so some of the fruits were out and most non water drinks-because citrus acid is in almost everything else as a preservative. Then dairy. The periphery of the grocery store is getting smaller and smaller at this point.

    I didn’t feel right again, but the symptoms were different this time-stomach pain, heartburn. By this time I am not even going to the doctor anymore-because I know there isn’t much they can do about food allergies and intolerances. I seem to get more from google than I do the medical establishment. My parents bought a restaurant and right next door is a gluten free vegan bakery. I bought some baked goods for breakfast because I knew they were dairy free. And guess what-no stomach pain. So I eat a naked salad with grilled chicken for lunch and again-no pain.

    Contact the doctor and advise them that wheat seems to be a problem. Tells me he can do tests to find out if it is celiac, an intolerance or allergy-but I have to be on gluten to do it. Gee, no thanks. Does it really matter what is really is-as long as I feel good?

    It isn’t a miraculous recovery-it’s slow going at times. My cooking skills have improved considerably. Baked goods are still a challenge. And getting accidental contamination is surely no picnic. But being able to feel good, happy and well is priceless. It does break my heart though to see my family members with so many symptoms say they could never be as strict about their diet as I am. When if they only did-I think the way they would feel would justify the effort.

  268. Wendy

    I had IBS symptoms, which I was told was a “nervous stomach.” Then, a few years ago, I had a virulent cold that turned into a long lasting sinus infection. From that time on, I suffered with horrible allergies, chronic sinusitis and suddenly developed adult onset asthma. A year later, my hair started thinning terribly. Also, all my life I was able to eat just about anything I wanted and never gain weight. I went gluten free at Christmas, without testing for celiac, and I have never felt better! My allergies are better, I don’t use any medication for asthma anymore, I don’t feel like I can’t keep my eyes open in the afternoons…it has been great!!

    I thought “maybe it isn’t really the gluten” and tried adding some in one weekend. OMG! I felt so horrible. I was so bloated that I couldn’t button any of my pants and anything touching my stomach felt incredibly uncomfortable. My brain was foggy and all I wanted to do was nap and watch tv. I strictly watched my diet and cut out all gluten and now I feel fantastic!! I go around telling everyone because I fee so great!!

  269. Kristin

    I am in shock. I’ve been feeling rotten for so long. All the symptoms everyone discusses. The one that hit me hard is the brain fog. I tried explaining this to my cardiologist (hypertensive, I am) who poo-pooed it as some menopausal thing I’d get over. Depression. He put me on Lexapro, which has helped, but it is not completely gone. I thought I was crazy to have the brain fog, but I had it. I never knew that could be a symptom of gluten issues. I started researching online yesterday to see what I could do to feel better, having decided in advance to try a gluten-free diet for a couple of weeks. I’m starting that program today, and I’m knowing that change will come. I live in Mexico, so I’m going to have to look hard for flours, etc., but I’m confident I can find things to make this work. I love to eat, I love to cook, and I’d love to feel better, so I’m very optimistic.

  270. Teresa

    I was diagnosed with IgA Nephropathy (autoimmune kidney disease) and hypothyroidism during a medical screening before leaving for a deployment to Afghanistan. I had heard about thyroid issues and wasn’t surprised to learn this but I had no idea what IgA Nephropathy was. While overseas I began doing research on the disease and decided that when I returned to the states I would go see an allergy specialist to see if there was any connection. The bloodwork indicated I had a severe reaction to casein and a mild reaction to gluten. At this point I had never heard of celiacs. However, I started an elimination diet. I removed dairy from my diet and that reduced my protein levels in my urine by 50%. After removing gluten I had another 30% reduction in my urine. I would have never imagined I had a gluten intolerance but since taking gluten out of my diet my complexion is better, my thinking clearer, and I feel healthier. In an aside, it took me a little while to find a kidney doctor who recognized eating a hypoallergenic diet as a critical element of managing my kidney disease, which has given me tremendous peace of mind.

  271. Tracy

    Wow — lots of good stories here. My story is a bit different in that I was having horrible pain in my upper left abdomen along with the digestive issues many of you have mentioned already. My GI doc thought of celiac right away but didn’t think that would be it. Imagine my surprise and his surprise when I had a positive biopsy and got my “celiac disease” diagnosis. From first visit to diagnosis — only a couple of months. I had the symptoms for a long time prior but dismissed them as stress and getting older. After going gluten free — I felt GREAT for the first few months… and then reverted back to all of my old symptoms. Another biopsy indicated there was no improvement in my villi over the first biopsy.… my doctors all thought I was cheating. There was NO gluten in my diet, in my personal products or anything I ate or used. I had separate dishes for my food, hand-washing 10–20 times a day (I had young children at the time and after feeding them I washed compulsively). I even threw away my perfume because the manufacturer couldn’t say it was gluten free!!! I saw another specicialist who did genetic testing and I was told that I didn’t have celiac disease because I did not have the genetic markers. Imagine my surprise.…. So, I went back to eating what I normally ate (since I didn’t feel better on GF anyway post the few month euphoria after switching). Of course, I feel as awful as I did when my first visit sent me to the doctor originally. I have recently gone back to the GF diet since it is clear I must have some sort of gluten sensitivity or some other auto-immune reaction occuring. I have been so dis-enchanted with the medical community that I haven’t gone back to see my GI in 2 years. Has this happened to anyone else? Initial improvement on GF diet and then regression? Thanks to anyone who responds.

  272. Stephanie

    My son was 7 when he was diagnosed, a year ago. Before he was diagnosed with celiac disease I was told he had severe heartburn, constipation, etc. I was told by teachers and other parents he was difficult to deal with at school, behavior issues. I was called by the school because he was nearly unconscience from pain! We took him to the emergency room and finally had a doctor that took him seriously, the nurses kept telling me he just had gas. The ER doctor sent us to a pediatric GI and within 2 months, we had the celiac diagnosis. Since we went gluten free he is great, it has been such a relief!

    My sons GI had the rest of the immediate family tested, we found that I, my sons dad, and his brother all have it too! Again, this was a huge relief to me since I had been having sypmtoms for years. I was typically told that I had IBS and should take extra fiber. I was told the sores in my mouth and throat were from reflux. I was told I have hashimoto’s disease. Now that I am GF, no more IBS sysptoms and no more sores!

    I wish my son did not have to suffer like he did, I wish his doctor had taken him seriously. I am so thankful for that ER doctor that really listened to my young son. I was able to see the ER doctor and thank him personally, he really changed our lives for the better.

  273. Liz

    Almost three years ago, my digestive tract just stopped working. I went from a size 4 to a size 8 (bordering on a size 10) in about three weeks. Also, my periods stopped and my mood swings were out of control. I went to three different doctors (including an OBGYN; I thought I might somehow be pregnant). I did a little research and figured it might be a good idea to test for allergies. After two of the primary care doctors shrugged off the idea of a biopsy or blood panel, I had had enough and gave up. One week of bloating hell later, I went to a GI doctor, and he almost immediately suggested celiac disease. After the biopsy, I stopped eating gluten, and I kid you not, I lost ten pounds in three days. A week after that, I was back down to my regular 135 lbs, and actually lost another seven pounds in the next month. I was not diagnosed with celiac disease, but I am gluten intolerant. I am lucky to have had such a quick diagnosis.

  274. KellyH

    The past year and a half I have not felt well. I have had panic attacks, nausea, bloatness, gallbladder pain, extreme fatigue, brain fog, vitamin d deficiency, constipation and then diarrhea. I tested negative for celiac. All the visit with the gall bladder don’t show anything. I have been trying gluten free for the past 8 months on and off. Sometimes I would wonder if it was a food allergy or something was wrong with my gall bladder. I do think it is an allergy. I feel worse everytime I eat out. When I stay home or bring my lunch and be very religious on gluten-free foods, I feel so much better and a lot of my symptoms go away. My mom’s side of the family has always been plagued with digestive issues. She told me it is just our stomachs and there is nothing we can do about it. I beg to differ. Thinking back of my childhood, I would be doubled over in pain after eating and have to go lay down, always had a mouthful of canker sores, and later in life dealing with every digestive issue and miscarriages. I think it is all coming to a head. I am getting better with it. I do find holidays and outings with friends to be very hard. I go to the gi doctor yet again on Monday and I am going to demand getting tested for food allergies.

  275. Kim

    I was always the one on the phone that people called sniffly or they constantly asked me if I had a cold. I had been a major allergy sufferer for the past 20 years. Allergic to my cats, dust mites, rye grass and walnut trees. I’ve spent small fortunes on nasal allergy relief. My prior allergy tests never showed a sensitivity to wheat/gluten. Just over a month ago, I caught strep throat. For five days, I ate only Greek yogurt and organic chicken stock. During this time, I discovered I had no nasal allergies at all. I could hold my cat and not sneeze. Immediately, the nasal congestion, that had been a daily part of life, was gone. Feeling better, I ate a sandwich for lunch and immediately became stuffy, something clicked. Could it be the gluten? I cut all gluten out again and the allergies were once again gone. My eczema and psoriasis are fast fading away too. Amazing how one little change could have so much impact!

  276. Britt

    I went undiagnosed for over nine years, and because I was so desperate, I stopped eating gluten before I could have a biopsy (frustrating my doctors with a lack of an “official diagnosis”)
    I had swollen joints, especially in my knees and hips, hair loss, thyroid problems, eczema, Sjogren’s disease, rapid weight gain, fainting spells, headaches, dizziness, light headiness, dysmenorrhea, diarrhea, bloating, cramps, general GI pain, sinus issues, severe allergies to most anything you could think of “except food,” issues with skin pigmentation, tingling and numbness in my limbs and extremities, fatigue, and depression.
    All of these were being treated as separate issues, supposedly unrelated. I had an internist inform me I should quit gluten, refined sugar and dairy cold turkey. I did so and after a horrific “withdrawl” period of two weeks I had a complete turn around. I glowed. I felt well enough to do anything! My joints stopped swelling so I could pick up working out again. The bloating ceased and I dropped twenty pounds in four months eating a higher caloric diet, as well as significantly more fat. It was like a miracle.
    Gluten free is my new way of life, and though I can’t say it is easy or fun, I will say I am never tempted to turn back!

  277. Erica

    Shauna, this is a great post, as usual :)
    It can be very difficult to figure out what’s ailing you, especially when the myriad of symptoms lead to so many possible sources. And let’s face it — gluten is not easy to digest, whether you’re compromised or not.
    I think a recent post I published will also help folks understand a host of issues related to food allergies, intolerances, and immune reactions. Hope you don’t mind me posting this here: http://comfybelly.com/2011/05/food-sensitivity-testing-interview-with-dr-sage-wheeler/
    Best wishes.

  278. Stephanie

    Symptoms:
    acid reflux (almost 10 years) only successfully treated with medication
    early arthritis (18 months)
    abdominal pain
    fat malabsorption
    bone loss
    vitamin D deficiency
    iron deficiency with anemia
    weight loss
    increasing malaise and loss of motivation

    Then, in the last week or so prior to beginning the diet:
    fainting
    random bruising
    nosebleeds
    extreme fatigue (sleeping 12+ hours per day and still unable to be active or energetic)

    My testing process yielded mixed and indeterminate results. In the end, though, I’m grateful for the wise old doctor who said to start the diet and some extra supplements ASAP, as opposed to the gatroenterologist who said it’s probably not gluten and let’s do some more testing. My recovery was pretty quick, with visible results in 3 weeks although complete healing really took about 8 months.

    Fortunately, I always cooked at home most of the time. I traded out my pasta and started using millet and buckwheat often. It’s still a pain to eat out though, despite increased awareness, and I eat fewer grains and fewer whole grains. Thank goodness for vegetables!

  279. Stephanie

    Wait, I forgot the low magnesium, insomnia, acne, and… shall we say fertility issues?

    It’s been incredible to heal, and really be healthy. I can drink wine and caffiene regularly again, instead of rationing them for when I really really want them and am willing to down antacids like candy! And no stomachaches!

  280. Brenda

    I was literally 24 hrs from having my thyroid removed. I had an appointment with a dermatologist the afternoon prior to my thyroid surgery to see what we could do to mitigate the horrible itching from the rash on my legs and trunk. The itching was intense. The dermatologist took one look at my rash (keep in mind I went to about 5 doctors prior to him for the same reason). He asked, “Do you have an allergy to food?” I SWEAR I could see my entire life flash before my eyes. I was 47 at the time. Much like everyone else that has shared I knew where every bathroom was in three states, always had tums and immodium on hand, every rash cream known to man, and had become adept at hiding the searing pain after eating. In the ten years prior to my dermatologist appt I’d been to multiple neurologists for numbness in my hands, legs and the development of migraines, blindness, dizziness. None had an explanation. My gall bladder had been removed along with a hysterectomy — both for pain. I’d gone for years not eating at public events. I was told I couldn’t have children — we were blessed to have had a daughter but believe my food allergies led to very real fertility problems.

    Sitting there that afternoon I KNEW immediately I was allergic to wheat and most certainly milk. Memories of severe stomach pain — drinking milk to ease the pain — then needing to lay down because of the increase in intense, searing pain. Tears rolling down my cheeks as I desperately tried to control the pain and remain calm. I remember sitting in the dermatologists office feeling like I’d been hit by a sledgehammer. The relief was profound. I quit eating wheat and milk that day. No more testing, no more questions. I just knew.

    My thyroid surgery? I cancelled it. After two years of being treated/painfully tested for a goiter –that was beginning to hamper my ability to swallow — within 48 hrs of not eating wheat my goiter was gone. GONE. It hasn’t come back. I was getting ready to remove my thyroid. It scares me when I think about it. I went back to my endocrinologist to make sure he knew about the connection to wheat allergies and thyroid disease.

    The rest of my symptoms were gone within 6 months. I was tested for other food allergies (blood testing) and discovered a very long list of foods I was unable to eat. As each was removed from my diet my health improved. No more migraines, no more joint pain, numbness was one symptom that hung on but improved over time.

    I’m incredibly thankful for this blog, the stories faithfully shared by others to improve the lives of others.

  281. Jennifer

    I am in tears as I write this. Tears of joy and relief but also tears of frustration. I was diagnosed with stomach ulcers when I was 8 years old, every day after that for years I was sick every day. Nausea and stomach pain, severe depression and moodiness. I couldn’t keep most food down and was frighteningly thin. I missed out on so much in elementary school and high school. In college I ended up dropping out due to medical issues, (wished I had known that my typical college student diet of ramen was making me sick) I ended up being hospitalized dozens of times in my early twenties for things people generally aren’t hospitalized for. The last time was because I had a kidney infection that would not go away even after 6 months and 7 rounds of antibiotics and my kidney started hemorrhaging. I have been to dozens of doctors and tested for everything from hypoglycemia, diabetes, lupus, chrohns, arthritis. Most of these doctors treated me like I was faking illness, and most of them suggested anti-depressents. I also had many people including these doctors accuse me of having an eating disorder or being a junkie because at 22 I weighed 94 lbs and I’m 5’8″. I was pale had dark circles under my eyes, had trouble eating, erratic behavior and mood swings, couldn’t gain weight even when i constantly ate donuts and bacon cheeseburgers. I got even sicker when I got out of the hospital and ended up at a low-income clinic after I had lost my job and my insurance due to illness. I was back down to under 100 lbs and showing serious symptoms of malnutrition. It was this doctor who sat and held my hand while I cried desperate afraid I was going to die because nobody knew what was wrong with me and nobody believed that I was seriously ill. She knew I couldn’t afford to have any testing done and she suggested I try a gluten free diet. It seemed so simple, I was doubtful but I promised to try it. I left there feeling 90 years old, tired, my head and my bones aching, on the verge of malnutrition induced organ failure, but 3 weeks later I felt better than I had in my entire life. It was like an awakening. I am now at 28 a healthy 127 lbs and almost a year gluten-free. I can go on trips and outings with out having to leave early because I feel like crap. I still call my mom in tears when I go on a gluten-free junk food binge and I don’t get sick even though I ate junk food. It kills me that people think my gluten intolerance is all in my head or ‘some weird hippie diet’ I just wish they could see the difference it can make in someone’s life, and that the medical community would over-diagnose this rather than under-diagnose this. It was so nice to read that I’m not the only one who has gone through these things, and even if everyone in my life is not supportive, that I am not alone.

  282. new_G-free_diet

    Hi Everyone,
    I’m pretty sure I don’t have celiac, but I do suspect gluten sensitivity. I have symptoms of migraine headaches, which develop into nausea/upset stomach. Anyone else in the same boat?
    Thanks very much for this blog.

  283. Mary K

    Looking back on my younger days I remember always having stomach problems. In my adult years it calmed down a bit and I probably just got use to it. In 1992 I started breaking out with erythema nodosum. An auto-immune disease that causes red nodules to pop up all over the legs and feet. Very painful, very ugly! The usual sufferer only has one episode and rarely sees them again. I suffered chronically throughout the years. No doctor could help. It was idiopathic! No doctor would “find a cause for the inflammation” either! I suffered a severe bout of C-Diff in 2003. I believe that was my kick-start to the wonderful world of becoming more gluten intolerant. The weight started disappearing and the gastrointestinal issues became more pronounced. My hair was thinning and dry, my skin aged, my vision changed rapidly. My erythema nodosum was at it’s worst. I finally told my doctor to please quit looking at my heart and other organs and explore the stomach and intestinal region. Just last year after losing over 20lbs and begging them not to hurt me when they took blood, I was finally diagnosed as Celiac on November 5, 20ll.. After only 3 days of going 100% gluten free I was back to feeling awesome. All of the intestinal symptoms were gone. I do have a new problem though that I’d love to know if someone else has experienced. Pain has overtaken me from head to toe. I was just diagnosed with carpal tunnel in both wrists. But that doesn’t explain the pain I have from head to toe. Is there such a thing as pain from the nerves learning how to function again after being so malnourished?

    1. Veronica Jessup

      Sorry to hear your story. And sad to hear your new ongoing symptoms. A few avenues to try.… electrolyte inbalances? My daughter couldn’t sleep and they discovered she was low on magnesium. They did a blood test that was normal. Instead her Dr. gave her a dose of liquid magnesium. If it tasted metalic, she didn’t need the mag. If she thought it was sweet, she was deficient. She thought it was yummy. We gave her supplements and sure enough… sleep came round for her! Also have you pursued other food sensitivities and allergies? Usually when someone is allergic to gluten, they also have other food allergies. Most commonly eggs, yeast, casein and/or soy. I have all 5 insensitivities. I hope you find your answers. Be persistant. And tell your story… someone will lead you the right direction. Good luck and happy healing!!

      1. Mary K

        Did your gastro. doc do the food sensitivities test or your PCM? I think that might be my next issue to tackle! Thanks for your reply. It really is good to get another perspective.

  284. Nicole

    This post both encourages and scares me (but it’s a good fear!)

    I’ve been constantly ill for months on end now (never-ending respiratory infections and “flu” bugs, my stomach is always a mess, and oh my word, the headaches. I’ve had migraines so bad that it was thought that I was having a stroke. I have no answers for why I feel so wretched most of the time.

    Now I have a lead. Arming myself with the information here I am going to my doctor. Let’s see what happens.

    Thank you, for posting this. You’re changing and saving lives.

    1. Mary K

      Please don’t be scared. If it truly is gluten intolerance, gluten allergy, or Celiac disease — you’ve already lived through the hard part. Going gluten free nowadays is so much easier because of all the hard work done for us by millions of GF pioneers. God bless you in your trek to a true diagnosis and for a complete and speedy recovery.

  285. Michelle

    I appreciate your blog. Been having some severe problems with my gallbladder/liver which explains why I would be looking up blogs on this very issue. I did just want to simply state that according to Dr. Mercola’s many articles on the subject, the numbers are far higher for gluten intolerance! Since the vast majority of the population has a certain type of gluten intolerance, you must go deeper than that. To be honest, it is not gluten that is your problem. The wheat and many other grains in US production are full of mycotoxins and according to the World Health Organization they are “universally contaminated”. Not sure if it’s in the storage, but as I understand it these neurological, digestive, muscular (some have fibromyalgia like I used to), and the myriad of other symptoms are not due to gluten, but to the constant bombardment and ingestion of these mycotoxins (fungal poisons). Celiac disease, pancreatitis, gallbladder disease is simply all just a fungal infection, a systemic fungal infection of of the area and can be cured very rapidly with a truly grain-free diet and some great anti-fungals. Having said that.…please do not take out your gallbladder! I was in so much pain last night (I had a sandwchich with two pieces of bread and suffered dear) and I had another pancreatic episode. Mercola’s article on the gallbladder is phenomenal. The gallbladder is terribly necessary to health and doctors don’t know a thing about the nutrition link! Watch a show called Know the Cause. You can find it online at http://www.knowthecause.com or on your local cable stations. The world’s most watch health show to date. You can reverse anything if you go anti-fungal in your treatment: cancer, Aids, Celiac disease, arthritits, Diabetes. God bless and good health.

  286. Sarah

    I have a close friend who has Celiac Disease. Her mother does too.

    I’ve always had gastro issues, with no rhyme or reason to it from what I could tell. My mother (she has diverticulosis) and brother do too (he has IBS)-they’ve had other health issues all their lives. So have I.

    Two years ago I began feeling like there was a balloon in my stomach. Whenever I would eat even a little bit, it felt like someone blew up the balloon to it’s maximum capacity. I looked pregnant when I ate. I would feel so bloated (At the time, I didn’t realize that’s what bloating was-probably because I’ve always been bloated in some capacity, so I didn’t know the difference), but still feel so hungry; it felt like the hunger pangs were coming from underneath the balloon. It was so strange.

    Also-this is gross, but important-I had a chronic anal fissure that had been ongoing for at least two years by that time. I didn’t know that’s what it was. I thought it was a hemorrhoid. That same NP confirmed it was a fissure. She told me there was not much I could do, other than what I was already doing (which wasn’t helping)-epsom salt baths, drinking lots of water, and eating lots of fiber.

    I kept complaining about it and my Celiac friend and her mom suggested that maybe I was intolerant to gluten. I went to the NP at my doctor’s office (because I decided I didn’t like the doctor herself) and she told me that the tests weren’t reliable, so I should just stop eating gluten for two weeks and see if I felt better. So I did, and I felt a lot better. My skin, which has always been dry, became less dry (though, still dry, and I think that’s just a genetic thing as well as a living in a desert thing). The most miraculous part of it, to me, was that the fissure cleared up. It still flares up now and again (perhaps when I’ve recently been glutened? or maybe just because it’s a difficult area to heal and it was going on for so long), but it’s mostly healed now. It’s crazy to think that I lived with that pain for so long.

    Since then, I’ve realized that the protein deficiency I had when I was a vegetarian, years before this, perhaps was caused by the lack of ability of my damaged from gluten intestines to properly absorb protein that wasn’t 100% meat. I ate lots of fake meat, I ate eggs, I ate beans, I ate peanut butter, I ate tons of cheese. I didn’t eat all that healthy back then, but I kept track of what I ate for my naturopath and she said I was technically getting enough protein but my labs came back showing an extremely low amount of protein in my body.

    I also have chronic headahces, which seemed to improve somewhat when I removed gluten from my diet.

    I have psychiatric problems, and while they haven’t magically disappeared with the removal of gluten, I like to think that they improved when my overall health improved. I do know that when I have tried tiny bits of gluten to test the waters, I have had extreme mood swings for days, if not weeks, afterward. I am on medication to stabilize my mood, so that shouldn’t be happening otherwise.

    I have gallbladder dyskinesia (which I only recently found out for sure, after asking a doctor, who 100% doubted me, to order a HIDA scan for me). I had my first gal bladder attack when I was 14 or 15. I didn’t have another until I was 19. I remember those both clearly. They hurt for hours. I started having the same pain pretty regularly, but with no real discernible pattern (other than drinking soda, especially if I drank it too fast-but it only happened sometimes) from that second one on. It would last for about a half hour every time. Since I stopped eating gluten (and eating healthier in general, as happens to so many of us when we kick out gluten and find out there are so many other foods out there), I’ve only had a handful of gal bladder attacks, even though the organ is functioning far below the lowest rate considered normal. Because I don’t eat gluten, I don’t have gallbladder attacks. Because I don’t have gallbladder attacks, even though the organ is sluggish, I don’t have to have surgery to have my gallbladder removed.

    I have a sneaking suspicion that my brother and mother (and her mother and probably at least some of her siblings as well-who also have/had chronic health issues) also had this issue. Perhaps I actually have Celiac, and so do they. It doesn’t really matter to me what it’s called (like you said)-the solution is no gluten.

  287. Sarah

    I forgot to mention that within a few weeks of going GF, I lost about 10 pounds, and it looked like more, because I wasn’t bloated anymore. My friends were shocked. Even my face looked so much thinner. It was pretty amazing.

  288. Veronica Jessup

    My child was diagnosed, finally, after many misdiagnosis’ including surgical intervention, 2 different pychiatric meds for her “anxiety and pain disorder”, wearing a TENS unit and finally receiving pain control through heavy duty antiinflammatories, and nausea medications. She ended up being diagnosed with 12 food intolerances. I call them allergies. She cannot function when she eats these foods. Including gluten. She was 8 years old when she began with symptoms and was 13 1/2, almost 14, when diagnosed. She had been an A student who dropped out of regular school to be in an independent study program. The road has been long and honestly, lonely. Medical professionals still didn’t believe it when diagnosed. I left our insurance co. behind and paid out of pocket to receive her diagnosis. I now know that I also have gluten sensitivity and 4 other food intolerances and so does my 5 year old who had “silent symptoms” of gluten sensitivity. She had the geographical tongue and multiple mouth ulcers contstantly. I had the body aches and migraines. All of us our symptom free when we stick to our eating strategies. I share our story with anyone who will listen. Thank you, thank you for sharing yours. It’s very validating to read that we were not alone. We just had to find you!

  289. Lindsay

    After seeing multiple doctors, specialists, naturopaths, and still being completely and debilitatingly exhausted at only 34 yrs old, I did my own research. Entering “Extreme Exhaustion” into the Google search bar brings up all kinds of things and, after weeding through and ruling out symptoms, I’ve come to believe I am at the very least gluten intolerant. You have no idea how excited this makes me! The thought of having a name to why I went from running 5k’s and barrel racing every weekend to sleeping days at a time is thrilling! No more mystery illness and, even better, a way to FIX IT? By God, I hope this is my answer.…

  290. Ryan

    I’ve had tingling and numbness, diarrhea, joint pain, mouth sores from my Celiac that I thought were just from biting my cheeks or lips, stomach pain, gas, cramps, MAJOR fatigue like I cannot express, but I also have dealt with super anxiety, really bad. My doctors have thought it was related to not eating right with my Celiac diet. I’ve always had migraines and headaches which I suppose could be related to being Celiac. I have not yet completely gone fully gluten-free yet so I still do suffer from my symptoms and I’m stupid for that. I am trying to do much better now and I aim to be gluten-free. I’ve just had no job for almost a year so I’m eating what is readily available in the home because I don’t have the funds to go out and go gluten-free grocery shopping.

    1. Ryan

      Also, I went to my doctor for years with stomach issues, had multiple upper GI’s, small bowel follow through’s, barium swallows, and he always just said I was questionable for irritable bowel. It wasn’t until I started working at a doctor’s office, learned about a gastroenterologist that was located upstairs, I went to my doctor with their referral form and told him to send it to them with my records. So I had pretty much had to refer myself because my previous doctor did nothing about finding out what all the symptoms were related to. I’m sure others have been treated this way, too.

  291. Penny

    I just wanted to say a quick thanks! This blog post was the catalyst for me figuring out what was going on with my 4 1/2 year old daughter. It sounded just like her, and the comments were especially helpful. I took her off gluten just to see what would happen, and within 48 hours, she’d made an incredible turnaround. She went from angry, anxious, and upset all the time to…happy. I’d rarely seen her happy. She was finally able to tell me that she’d had a stomachache. She had no words for it before, it was simply her state of being, she didn’t know there was any other way to feel.

    As it turns out, the doctors don’t believe she’s gluten intolerant, they believe that she is a fructose malabsorper, and wheat is full of fructans (long chains of fructose with a glucose molecule on the end). So the theory is that the wheat was making her very sick because of her problems with fructose rather than gluten. In any event, going gluten free accomplishes the same goal: making her feel better.

    So many of the issues she had since she was a tiny little baby are going away: her extreme sensitivity to touch and sensory issues, her mood swings, her anxiety, all getting better. I’m so happy for her I can’t express it in words.

    And I have your blog post to thank for getting the ball rolling! (And my friend Amy, for posting the link to your blog post on Facebook!) So thank you!! Thank you!!!

  292. Zoe

    Constipation, acne, tiredness, bloating. Depression. Fluid retention in my face so terrible that I looked like a different person. Feeling as though I had aged 20 years in the span of 2. Arrested menstruation for six months. Still waiting on the next period to see if it returns naturally, after going (almost…) gluten free for the past month. Hardest part has been not being sure, not having an official diagnosis. I am gluten-intolerant according to a electro-magnetic test I had done. I am gluten-intolerant according to my own observation. The symptom, now that I look back, have been persistent throughout my life but only really emerged in a time of unprecedented stress (I though I had bedbugs and HIV). Bedbugs = itchy skin, paranoia, panic attacks. Didn’t have bedbugs. HIV — I don’t have it, but I was desperately seeking a culprit for all my minor and major unrelated symptoms. I was scared and looking for answers. Also, constantly feeling as though I was in a state of recovery, haven’t had my voice back for 6 months. I cannot sing the way I used to. I feel week vocally, and easily tired in conversations. I have not been totally gluten free. I thought I could get away with it. Treat gluten like a special drug for secret occasions in the dark. I am still healing and learning. I always will be. Listen to yourself and give yourself the credit for the learning you’re doing.

  293. Jennie

    Brain fog, anxiety, fatigue, constipation, increased bowel movements, tingly sensation in my limbs, dizziness (I presume due to a vitamin deficiency). I just narrowed it down to a gluten intolerance this week. I’ve had a thyroid autoimmune and have a couple other risk factors so I wouldn’t be surprised if it is indeed celiac.

  294. Bobbi

    I was diagnosed with hypothyroidism 12 years ago. Over these years, never has a doctor told me that the kind of hypothyroidism I have is Hashimoto’s, which is triggered by gluten. Until a few weeks ago I went to see a naturopath. She looked at my labwork from the previous doctor and told me what I needed to know. I feel kind of cheated out of the last 12 years, over which I’ve gained weight, been more and more depressed, lost every bit of energy, and been in constant pain. I’m excited now though about this journey to health and feeling good again:) I’m glad I found your blog!

  295. Krista

    I’m soooo glad to meet you! We are new on this journey (for my 4 1/2 year old son), but I’m fairly sure he’s had an issue with this for 2 years. And I’m not sure we would have figured it out if celiac/gluten sensitivity didn’t already run in my husband’s family.
    My son has had a horrid peeling/cracking skin rash on the fingertips of his right hand for 2 years. It was a bit on his feet too, but that went away eventually. The fingers… the doctor had us on anti-fungal cream, then steroid cream, then he just kind of gave up. We just kept putting on thick lotion to keep them from cracking to the point of bleeding.
    Finally this summer we went to a naturopath for some other things and brought up the fingers. One of the first things she said was it could be a gluten allergy as since he didn’t have it anywhere else on his body it often presents in the extremities. My husband was extremely leery of her (thinks she’s not a “real” doctor) and didn’t want to do a GF trial.
    Then we spent a week in Baltimore with his sister… who just happens to eat GF — she cured her fibromyalgia by doing that, but never has had an official gluten or celiac diagnosis. (My husband’s grandmother was diagnosed celiac — and he and his sister are twins so the family trait is pretty strong) While we were in Baltimore his fingers cleared up. IN a week. And they’ve never been that clear in over 2 years. We at first attributed it to the humidity, but just last week it hit me up side the head… duh, we ate her GF cooking for that whole week with only a couple of things here and there otherwise.
    And, lately my mom (who keeps my son sometimes) has been telling me that my son often complains of a stomach ache at her house, won’t eat, and then has bathroom issues. I didn’t notice it as much at my house, but I think they eat more gluten things at her house than here.
    All of these things made me realize that even without a diagnosis I’m pretty sure this is where we’re at. We’re now on day 4 of gluten free and his fingers are clearing up and if I ask him he says his tummy feels better. I’m so thankful that it didn’t take 11 years to figure this out!!!

  296. Carol

    I have been recently diagnosed with celiac disease. Back up 5 years ago, when I was first getting sick, I couldn’t hardly eat anything. As soon as I would look at food, the stomach pains would start. I would try to force myself to eat and got maybe halfway through my meal and would feel nausea and couldn’t continue. I felt much better when I didn’t eat, and it seemed to be such a chore since I literally had to force myself. Some days I would have to just lay down because the stomach pains were so intense. After seeing a friend one day, and wearing size 4 pants that were falling off me, she said how worried she was about me. That’s when I realized how really sick I was, but still at that time, my GI specialist was doing all these tests. From gallbladder tests to an endocopy (stopping at my stomach and not going to the small intestine) until he finally told me everything looked great, I just had IBS, and he prescribed me an antidepressant. It was dropped. He didn’t seem worried that I looked sick and was loosing weight. I never took the medicine because I think deep inside I didn’t believe I was that stressed. Looking back now I realize that I was experiencing malnutrition and the last few years have been a tough time in my life because I have never felt well. My family was even getting frustrated and told me to stop worrying about things, thinking that I was making myself sick. This year, after much prodding by my husband to keep going to the doctor to find an answer, I decided I would go until they found out what was wrong. My family doctor took it upon herself to run every test she could think of that would cause the symptoms I was describing and listening to me explain how I couldn’t live like this anymore. I had to go back several times and then the LAST test she did was for celiac, even though she said mostly likely I did have IBS since all other tests came back normal, but she would do this last blood test to rule it out. Low and behold, I tested positive with highly elevated antibodies. Praise God! I finally found out why I have been sick and it’s not all in my head. I’m not going crazy after all! I have started the diet for one week now and not only have I noticed a difference in how I feel but my family has noticed a difference in me. They can tell I feel better and I haven’t been sick except one day because I tried a gluten free dish at a restaurant that didn’t work well with me. It has been a series of ups and downs after hearing of my diagnoses; thoughts of anger that the GI doctor didn’t go further with the endoscopy test to anguish about having to restrict my diet for the rest of my life, to excitement that I will actually feel normal and well again! Your story has been very encouraging and I look forward to reading and learning more about this lifetime commitment of a gluten free diet with the information from your website. Thanks for the time you have put into this to help others!

    1. Carol

      Also, other symptoms I have had: severe headaches, sinus conjestion and chronic sinus infections, thinnng hair, hyperthyroidism, sleep problems, fatigue and feeling tired, and diarrhea (on a weekly basis). I am hoping to have these symptoms go away after being on the GF diet!

  297. Maureen

    My best recollection is that I started suffering from stomach issues in my early teens — my solution was to stop eating breakfast and lunch and avoid any long outings or car rides. In my 20s I was “diagnosed” with IBS and told to eat more fiber — I got worse. When my daughter was an infant and starting eating “real food” I noticed she had alot of bloating and constipation so off to the pediatrician we went — IBS again and again was the answer that we received. I tried all sorts of strategies to control the symptons — going vegetarian, giving up lactose, not eating dessets…but nothing worked. My daugther, in her late teens, even tried going vegan.

    Finally, when my niece was about two years old, she was diagnosed with celiac and we started to connect the pieces. I went GF about three years ago and my health has changed significantly. The stomach problems have all but disappeared but I also noticed many of my other health problems were improving — my acne rosacea has cleared up, the contant tingling in my hands has disappeared, allergies have mostly disappeared, my joint pain is reduced, iron deficiency is gone, haven’t have a cold, flu or sinus infection since, etc, etc, etc. My daughter followed suit about two years ago and she has experienced the same kind of improvements and, in addition, she thinks it has improved her psychological state.

    It has been important to have the support and encouragement of family and friends through the process. My sisters, alhough undiagnosed, have also gone GF so family dinners are a breeze. I am so glad not to have to spend the next 40 year the same way I spent the first 40!

  298. Michelle

    I’m so glad I found your website. I haven’t officially started the gluten free, dairy free, but we are this upcoming week. We are working on eliminating all the gluten from our house. Its a big job, that’s for sure. My husband is having a hard time just throwing it away. He thinks we should just eat it all. I wish that he understood how dangerous all of this is. We haven’t been diagnosed with celiac or even gluten intolerance, but I highly suspect it to be the cause of our many problems. I have a daughter that was diagnosed Aspergers, ADHD, and Sensory Processing Disorder. My son also has SPD and he’s 5. He’s a really smart child, but his bathroom issues are a big one around here. He was totally trained at 2 different times in his life and he has gone backwards in potty training. Now he completely wets the bed at night even though he was night trained for 6 months. Pooping has always been an issue. He is constipated often. He’s super picky as well. I’m not sure if he’ll eat anything on this new “diet” (I hate that word..its really a new way of eating, not a diet) but we are sure going to try. I was recently diagnosed with Vit D deficiency. I’m at an 11 and should be at 30–80. It’s affecting me terribly. I’m dizzy, overweight, and have brain fog most of the time. I am fatigued much of the day. There was only really one time where I felt 100% in my whole life and it was when I went on Atkins. I eliminated all bread, sugar, and milk from my life and what a difference it made. Unfortunately, I didn’t stick with it and went back to feeling like crap again. I figure GFCF is way easier to implement than Atkins, so here we go. I want to feel normal again and I want my kids to be healthy, so we are going forward with high hopes for a big change. So glad I found sites like yours to help me on this journey. I esp. like your tips on how to make bread without Xanthan Gum. That stuff is expensive and not very good for you anyway. So glad I have an alternative!

  299. Carolyn

    I have no idea how I stumbled on your site or this post, in particular, but I did. My face looks JUST like that–only worse. I am forever embarrassed to go out in public. I’ve got a whole host of issues: the extremely blotchy red face, constant bad diarrhea, numbness in fingers and toes, an inability to lose weight (even when eating precious little), serious oversleep issues (I won’t confess how many hours in a 24-hour period I sleep), hypothyroid, ADD, brain fog. It would be wonderful if I could find the real source of all these problems.

  300. Maddy

    Hi, I am trying to figure out if I have gluten allergy. I have had something like IBS for about 10 years. Basically cramping and diarea after eating about 50% of the time. Lately I have been having wierd bouts of violent illness. Severe cramping for about an hour followed by diahrea and vomiting for about 3 hours, including heart palpitations and chills. no one else is sick and there is no obvious correlation to the food I ate (I am allergic to shellfish). Most recently this happened after thanksgiving dinner. Last time it happend after a tuna melt on wheat bread. About every 6 months, I have this severe unpredictable reaction about 1–3 hours after my last meal. I can eat a bagel or crossant without much of a problem. Maybe stuffing, gravy and pie crust just put me over some sort of limit? I do feel tired and foggy, but maybe that is because I have a toddler waking me up at 5:30 am. I did an atkins diet once and did feel great on it… mostly ate meat and veggies but also low carb high protein bread/tortillas. Maybe it reduced my gluten intake. Would appreciate anyone’s input if this sounds like a gluten sensitivity. I will try elimination diet of course too.

    1. shauna

      Maddy, I would ask for a celiac test before you do an elimination diet. And yes, it certainly sounds possible that it could be gluten.

  301. Marcie

    Hello all, after I had my daughter 7 years ago I began experiencing all sorts of symptoms, canker sores, depression/anxiety, sores on my scalp (which I now believe are DH) vision problems (loss of vision in one eye for a couple of hours) hot flashes, night sweats, very poor sleep, bloat, D and C off and on, bladder irritation, chemical sensitivities. Finally in December of 2009 my body completely shut down and I was sick (not working ) for 2 weeks. My doctor (who is good) put me on an anti depressant because he could not find anything wrong with me. Basically in 2010 I kept a journal of all of my symptoms (because I knew something was going on) January 2011 I went in for my annual checkup and told him that I thought I had some sort of immune system issue as it was affecting many different parts of my body, skin, eyes, the constant being the bowel. He told me he would run some tests. My Celiac panel numbers were through the roof and I stopped eating Gluten as soon as I found out. So now I am 10 month after diagnoses and I am feeling pretty good. In August I decided to go to a Nauropath and she put me on a program which made a huge difference, I am starting to feel healthy for the first time in a long time! I am now trying to educate my friends and family about this disease.

  302. Maria

    Thanks for all the comments. I am waiting on my results to see if I have celiac disease but the more I research and compare my symptoms, I am convinced I have it. Does anyone here also have benign fasciculation syndrome (twitching of muscles) ? I was diagnosed with that along with migraines and depression in 2010. Also for the past two years I have been experiencing constant stomach pains, stomach gurgling, gas, daily loose stool, joint pains , lactose intolerance and also had a goiter even though my thryroid tests were normal. Just wanted to know if anyone has celiac along with bfs. Thanks

    1. Alessandro

      Hi, sorry my bad english but I’m italian. I read that you have the benign fasciculation syndrome (twitching of muscles), I also have it and my neurologist has prescrived same cycle of magnesum for at last one month, to take when the problem is most evident…

      I also have digestion problems, and I have done the IgA antitransglutaminasi and it is negative, so I’m not celiac. I have same degree of lactosium intollerance, I try to eliminate it but I still fasciculating… Al blood exams are ok, now I’m trying a gluten free diet to see if fasciculations gone… but I do it only for two days now.. If you want I write here periodically my news… You are one of the few people with the same doubt that I have found, I’m courious to know if your fasciculations gone away with a gluten free diet.

      Sorry again for my bad english… bye hope to see you soon!

  303. Rachel L

    I am self-diagnosed gluten intolerant. I never considered gluten a problem until I tried the Atkins (very low carbohydrates) diet earlier this year. I felt AMAZING. The gas was gone. The brain fog lifted. The stomach cramping disappeared. My energy level increased so much that I felt like I could discontinue my antidepressants and maybe even lower my thyroid medication. That diet is (for me) too restrictive for long-term enjoyment, and I slipped back into my wheat-eating ways. All the symptoms came back, along with 15 pounds. I was diagnosed with IBS in the fall and after eliminating caffeine, I am now eliminating wheat/gluten. It has been great.

    I went to a family dinner the other day where the main course was breaded chicken. I didn’t want to make a big deal out of my new-found gluten free lifestyle (until I know for sure it is sticking), so I ate the chicken. Immediate stomach cramping, gas, bloating and diarreah. Yep! Gluten intolerant!

  304. amc

    I’m so grateful that my otherwise good-for-nothing doctors figured out my celiac. When I started drinking a decade ago, I used to get raging hangovers, before I was even done drinking. Beer and cheap vodka made me sickest. I was unable to go to sleep until well after I’d sobered up. I’d have nausea, upset stomach, headaches, cramping… all of it. I finally forced myself to be able to drink one beer completely before the various symptoms kicked in.

    I’ve had migraines and a crappy immune system my whole life (my first clear memory of having a migraine was when I was six). I used to catch *everything.* And I get the most random things. I had nonstop ear infections and strep as a kid. I got bronchitis three times in four years in my early 20s. I randomly somehow got mono two summers ago, even though no one else I knew was sick (including my husband, who took the opportunity to tease me non-stop).

    Three years ago, I mostly stopped eating pasta. It wasn’t a conscious decision per se. I got the worst migraine and vomiting of my life after eating a big bowl of pasta one day at work, and from then on, I had a serious aversion to pasta, especially when prepared with marinara sauce and Parmesan cheese. Ugh.

    About a year ago, I was having serious stomach cramps. The pain would wake me up at night. I was in absolute misery. My doctors thought it was gynecological. I went through five pelvic exams, an U/S, a CT scan and a round of strong antibiotics to treat a non-existent case of PID. Six weeks of misery, and no diagnosis. My symptoms mostly disappeared, so I stayed the course. Then six months ago, I started having extreme upset stomach problems. I was exhausted. My friends and family told me I was just spreading myself too thin. I dropped out of grad school, I quit my volunteer coaching job, I simplified my life as much as possible. And I just kept getting worse.

    I saw an allergist. He ignored my gastrointestinal distress, dismissing it as “stress-related.” He told me I didn’t have the symptoms of food allergies. I retreated. I kept getting worse. Finally, my husband, who was very much on the “it’s all in your head” train, told me he thought I was seriously sick and I should make a doctor’s appointment. I asked for a thyroid function test. I had gained weight and was unable to lose it. I was exhausted and mentally sluggish. The tummy problems. Everything seemed to point to hypothyroidism to me. Luckily he asked for the gluten panel too. And finally, two weeks later, I had the beginning of an answer. All my values were insanely abnormal. Three weeks later, I had my biopsy.

    I cut out wheat two days ago and I can’t wait to start feeling more like my old self. I get my “official” results next week, but the GI told me she was 98% sure it was celiac, without ever even looking at my biopsy. And I meet with a nutritionist next week too. I just can’t wait for this to be over.

  305. Alyssa

    I can’t really say if I had any indications of gluten intolerance when I was a kid (though my pretty consistent constipation until I was a teen might be a possible symptom), but when I was 22, I was diagnosed with Myasthenia Gravis (a disease of the neuromuscular junction, also autoimmune) after 2.5yrs of increasingly worsening symptoms. (MG causes muscle weakness and fatigue — among other things-, and I was a textbook case… enough so that when I was finally diagnosed, my hospital room was crowded with students and residents).

    At this point, on heavy doses of prednisone and mestinon, I started having troubles with my digestion. Doctors (my GP and my neurologist) seemed to put it down to the drugs and the MG affecting the motility of my intestines. I had diarrhea regularly, and in the ten years since my diagnosis, I became incredibly anxious, always worried about what would set off my digestion, and wondering where the nearest bathroom might be.

    My GP suggested Imodium, which did help somewhat, but never really went any further than that. Once my prednisone dosage was reduced, and I was off the mestinon completely, I had less digestion issues, but still regular bouts of diarrhea. Never constipation. I always felt tired, and figured it was the MG.

    In the last year or so, I’d been noticing that while I didn’t have explosive diarrhea much anymore, I was taking at least five to seven trips a day to the bathroom. I’d forgotten what ‘normal’ was. More trips to the GP, only to have suggestions of IBS, and again the suggestion of using Imodium. Finally I was able to convince her to refer me to a GI specialist, who did an endoscopy & a colonscopy. Everything came back fine; no evidence of any problems. (I can’t remember if a biopsy was done, but I think so.) And the GI specialist told me to cut back on eating fruits, dairy and caffeine.

    I tried that, but it didn’t help. However, last month while talking to a co-worker, who had many similar digestive issues to me (though not the MG!), she told me that at the suggestion of her doctor, she had gone completely gluten-free. Like me, she’d been a regular user of Imodium and had been told to avoid dairy and caffeine. It wasn’t until she started a GF diet that she saw any difference. And she told me that she hadn’t used any Imodium or other drugs for the whole two weeks she’d been GF.

    So I decided to take the chance. I knew it couldn’t hurt, and I was tired of being anxious all the time. So I went online and read a lot, and then went through my cupboards and took out everything with gluten. And then I went to the local organic/specialty grocery and bought GF bread (I love my sandwiches for lunch) and some GF pasta.

    This was a month ago. I’ve had a few missteps (I didn’t know that soy sauce had wheat — oops — and sushi could be contaminated, etc.), but have had several weeks of regular, normal BMs. My energy level has gotten better, but not amazing. I’m hoping that I’ll continue to see improvements, but with the MG I have to be careful not to overdo myself with exercise and any strenuous activity.

    Thank you Shauna for your site. It’s been a fantastic help for me, especially with the recipes. I’ve always cooked, but venturing into GF baking is less worrisome now that I have your recipes and information. And I loved your book. I can’t wait to read yours and the Chef’s book next.

  306. how to treat depression

    Hey there just wanted to give you a quick heads up. The words in your content seem to be running off the screen in Ie. I’m not sure if this is a formatting issue or something to do with browser compatibility but I thought I’d post to let you know. The design and style look great though! Hope you get the issue resolved soon. Cheers

  307. Dawn

    Hi, Thanks for the great website! I discovered it looking for ways to bake Christmas cookies. I have Hashimoto’s thyroiditis caused by gluten. I have only been gluten free for a few months and do cheat upon occasion, mostly when I am eating out and am unprepared. I knew I must have thyroid problems for years, I was constantly tired and couldn’t lose weight; I would wake up feeling tired. My regular doctor did the usual tests only to tell me the results were low normal and I should exercise first thing in the morning to solve my problems. It wasn’t until a friend recommended a nurse practitioner who listens to the symptoms and tests everything that I finally am getting help. I am not sure how careful I need to be, I figure I will do my best and when my antibodies are under control, I will know if even cross-contamination is a problem.

  308. Misty

    I had ‘lactose intolerance’ and an array of mild, but annoying things for most of my life: migraines, super skin sensitivity to fragrances and preservatives, occasional bouts of intestinal upset, fatigue I blamed on being a Type-A student, weird bouts of ‘brain fog’ and forgetfulness about mundane things.… all pretty vague an not terribly troubling.

    Shortly after my 30th birthday, I started to feel ill. Really ill. Intestinal distress, fatigue, head aches, nausea, fatigue, loss of appetite, joint pain, fatigue (yes, it deserves three mentions!). This was crushing for someone that loves the outdoors, hiking, and being active. Over a 6 month period, I lost over 30 lbs. and had to take a 3-hour nap to get through the day. A dear friend visited from overseas and pulled my husband aside to ask him what the ‘hell’ was wrong with me…he thought I had cancer and we were not telling him. I was gaunt, pale, and had no energy. My ‘before’ picture is very much like yours. I chalked all of this up to an travel bug as I and my office mates frequently traveled overseas as part of our job. I’d had my share of them from weird things acquired in Australia to ‘Galapagos’ Revenge’. So, I tended to just wait out things. Around that time, I had an appointment with my GP (who happens to be an internist). I went for a totally unrelated issue. At the end of the conversation, I said that “oh, by the way, I’ve been feeling cruddy”. Told her my symptoms. She asked a few questions, she pondered a moment and then ‘bam’…she looked me straight in the face and said she thought I had celiac disease. She wanted to run blood work to confirm and check for other issues, but that was her instinct given my Italian heritage and family ties with digestive disorders, rheumatoid arthritis and type-1 diabetes. I stopped eating gluten that day taking any shred of hope to feel better. The blood work confirmed her diagnosis a few days later. I felt better within a week. But, it look three long years to feel ‘normal’ again.

    It has been eleven years since diagnosis. I have a two year old. We did not give him any gluten until 12 months of age. He has, so far, exhibited no symptoms of celiac and all blood work looks normal. That said, about 80% of his diet is gluten-free, so time will tell if the symptoms are being held at abeyance due to the low amounts of gluten in his diet. I’m hoping that my husband’s gene’s win this particular battle.

    So, I was incredibly lucky to be diagnosed so quickly. I’ve very rarely had major issues since, although I’m currently suffering from the consequences of contaminated millet flour after making a batch of your awesome multigrain muffins. A good reminder to read every label and not to ever assume that 100% millet flour means gluten free. My non-celiace hubby is heart broken that he’ll have to eat them all. Thanks for the great blog, unflinching honesty, and amazing recipes.

  309. hallie

    I’m only starting a gluten-free experiment of my own, and I’m already feeling much better (after five/six days). I am inspired by all the stories here. It took me days to read them all. So many people share symptoms with me, and years of struggle to figure out what was wrong — or even *that* something was wrong, and that feeling miserable isn’t just part of life. It’s incredible. The internet is magic for helping us talk with each other and figure this out, since the medical establishment seems to be very unreliable in terms of recognizing symptoms and offering actual help.

    As a kid, I was famous for falling asleep (passing out, really) — even sitting up. Anywhere. Usually after meals, and we just ate the ‘normal’ typical crappy American diet that everyone else we knew ate. I was a picky eater, and my mum told me I’d always had stomach problems and that I cried a lot as a baby. Sigh.

    It took until a few years ago to get a low thyroid diagnosis, because my levels always tested ‘normal’. It seems obvious to me now that normal levels ? normal absorption, so I’m hopeful that once my guts start working right again, my low thyroid function will resolve itself. (Seems like my thyroid is working fine, if only my guts would cooperate and absorb what’s offered.) One thing I heard mentioned only once (maybe twice) in the stories above that I think deserves scrutiny is, I had stomach problems since I was a baby, which is probably wheat allergy or gluten intolerance. That was survivable and while I had miserable moments (and a borderline case of narcolepsy) I didn’t truly fall apart until I had a combination of amalgam fillings (eight gigantic ones, so basically a mouthful of toxic heavy metal) and also braces (anyone who likes science want to comment on the effect of dissimilar metals in contact with each other?) that sent me into a suicidal depression that lasted, I now see NOT coincidentally, until my braces were off. (I refused to wear my retainer. Now I have crooked-er teeth than I should have, but I spared myself a few more years of crushing depression.)

    I stumbled along all right for a few more years, until I got ‘good’ dental coverage and started getting work on my teeth again … because I could afford it. And guess what? Health plummets again. What a surprise.

    Now I think my guts are screwed up from years of either wheat allergy or gluten intolerance, and heavy metal poisoning. Getting the heavy metals out (safely!!!!!!) is obviously a big priority, while I continue to follow the gluten-free diet that’s lifted my brain fog enough to allow me to actually *do something about it*. And then I presume I’ll be back to MY ‘normal’ state — which is, not tolerating gluten especially well, but otherwise fine. Just like I was as a baby, when nobody knew what all the tummy fuss was about.

  310. hallie

    Oh! I forgot to list symptoms. There were so many.

    Aside from feeling drugged after eating, which was ‘my normal’ and therefore not something I recognized as a symptom of anything — there were more things I didn’t realize were not *just how things are* … like, feeling cold all the time, tingling/numbness in hands and feet, even when blood flow wasn’t restricted, vision problems (inability to focus for the eye test, e.g.), inattention, tinnitus, reduced sense of smell, confusion, vertigo (most noticeable going up/down stairs — I thought my vision problems were related to this, since my muscle memory was more reliable and I was safer not looking at my own feet), hearing loss (which manifested in me as ‘nerve deafness’), clumsiness, easy bruising/slow healing, emotional instability, anxiety, and fatigue fatigue fatigue — constant, drumming fatigue. I recently noticed that I sneeze in the morning when I’m in the kitchen — I blamed the moldy windowsill, but after that was clean and I kept sneezing, I realized it coincided with my husband putting his bagels in the toaster! DING DING DING

    My complexion has always been not-great and on the sallow side — I’m interested to see if that improves. Some of the symptoms I’ve listed improved when I went on thyroid medication, but the progress plateaued at a point and that is when I started thinking there was something else (or that I wasn’t medicated enough in terms of thyroid). Since going off gluten, I feel on the right track, but also like it is only a piece of the puzzle, at least for me.

  311. Rhonda

    HELP! I have a nine year old little girl who complains all the time of symptoms that many of you are describing. She has always been different from my other two children in that, when she was born, she had extremely horrible constipation that there seemed to be no treatment for. It was traumatic, almost like having a deliver a baby each time she had a bowel movement…we would be in tears every time. I was so frustrated and felt like a horrible mother. She has been high anxiety, and still is, super sensitive and constantly complaining of not feeling well. She also has attention problems, however she does very well in school. I notice that she has a different odor about her than my other two children ( I know that sounds weird), but she just has stronger smells…her feet, under arms, and breath are all super strong for a nine year old. She often complains of stomach aches (especially in the mornings) and she often has loose bowel movements. I noticed recently that the skin on the back of her arms is bumpy, like sand paper. And lately she has been complaining that her heart hurts…and she is afraid that she is going to die..this is causing panic attacks.
    I took her to have a heart test done which came out normal. However, I am truly beginning to wonder if this could all be due to Celiac disease or gluten allergy.
    I feel helpless to help her anymore. She is so scared and just has not felt well for a long time, and riddled with fear (probably because she knows that we don’t have answers). At school, her anxiety is beginning to cause her to be distracted. Does any of this sound familiar to you who have this disease? What role has anxiety played in it?
    Please help me know where to start in finding this out, her Dr. assures me that this is not the problem, so they have not run tests.
    Thank-you in advance for your help. Her name is Faith, if you want to keep her in your thoughts and prayers.
    Thank-you again,
    Rhonda

    1. DAniel

      From what your saying she is very smart.with that she knows that docs dont know wats goin on.That in itself can be a big part of the anxiety. but to answer your question i think it is a part of it.i have the same problem.

      Will deff say a prayer for the little one

  312. April A

    This site was awesome. Thanks so much for taking the time to put the info up and share your story. I have been on an emotional roller coaster when it comes to my health since 2001. I have been from doc to doc. Some looked at me as if I was crazy. Others gave me diagnoses but they seemed to be the general stuff that seem to be common diagnoses for when they don’t know whats really going on. I have been to the ER and basically told I was wasting their time because there wasn’t anything wrong with me. I have had skin issues, stomach trouble (since infancy) that has only gotten worse as I have gotten older, vitamin deficiencies, weight problems (although mine is I can’t seem to lose it), chronic pain and fatigue. I recently started seeing a new Gatro doc and had some tests run and been told I have gastritis along with the GERD, IBS, and Hiatal Hernia I was already diagnosed with. This article along with being urged by others with similar stories has made me decide I would like to discuss this with my doc. Thanks…

  313. Elizabeth Ouimette

    I suffered from so many stomach problems and allergies for the first 25 years of my life. Ever since I went gluten free a few years ago it seems I am problem free. It’s weird. I used to be very allergic to cats and metals and benzoyl peroxide and milk and the list goes on. Now I have a cat and I can even lay my face on his soft little belly to give him a hug or let him lick my cheek and it doesn’t effect me at all. Back in high school if a cat licked my face I wouldn’t be able to see for at least a day. I can chug milk. It used to make me puke and have really bad gas. I can wear all the cheap jewelry I want now. No worrying about non-gold giving me a rash. Even though I don’t use benzoyl peroxide I did a test just to see if it made my skin swell and get tiny bubbles on it like when I was a teenager. Nope. Nothing happened except for the typical dryness. When I was younger the doctors ran many tests on me and always told me, “the results are inconclusive” meaning “we are stumped and our expensive educations haven’t taught us anything”. I had really bad acid reflux disease for a long time. I lost 15 pounds because I couldn’t swallow anything. On my tiny already thin frame, 15 pounds shows quickly. Now I don’t even get heartburn. No more barium swallows or experimental drug combinations.

    I think my body was just being destroyed by the gluten. I LOVE bread, pizza, croissants and donuts. I ate them all the time. Now that I don’t eat any of that (I don’t do anything else healthier otherwise though), I am so much better. Happier. More energetic. It is easier for me to recover from injuries/bruises/scrapes. I am getting older. I am approaching my 30s but I feel like I am getting younger and younger. I sleep better.

    Being diagnosed with Celiac sucks at first because giving up so many tasty foods and the convenience of those foods is hard. Once you get used to it though, you can’t imagine going back to the old, miserable way of living. Trust me. If you are new to the diet. And I mean under a year of the diet, stick with it. It gets easier and the alternative food options are becoming more plentiful.

  314. Amy

    My now 4.5 year old was diagnosed 2 months after her 4th birthday with Coeliac Disease and Eosinophilic Oesophagitis (also is anaphylactic to nuts).
    Looking back there were ‘some’ symptoms, but to me nothing glaringly obvious.

    Prior she had diagnosed anaphylaxis to nuts, low muscle tone, hypermobile joints, virus induced asthma, needed eye surgery for a turned eye that wouldn’t correct with patching.
    We were told after diagnosis that the Coeliac Disease would in fact be making her muscle tone issues worse. She would also complain that her legs/feet hurt after walking not so big distances and ask to be picked up.

    What led us to take her to the paediatrician was that she got sick with terrible fevers the day of her birthday party. It seemed to take her 3 weeks to recover and during that time she lost 1 kilogram of weight, would do random vomits and was very lethargic. We had concerns about sending her to school the following year so made an appointment for a thorough assessment. The paed asked if I was happy with her growth. I said I thought she was a little shorter, but not super short. She had never had a problem with weight, but she did always have a bit of a belly. He said he would like to order some blood tests, including checking coeliac antibodies.

    Well her levels came back extremely high so then we had to make the decision on whether to get the small bowel biopsy done or not. We decided to, so that we knew for sure. We did have some people say, why, what is the point, just go gluten free. Thankfully I didn’t listen to them because as it happened she was also diagnosed with Eosinophilic Oesophagitis.

    Within a couple of weeks we noticed a change in her behaviour/moods. A change for the better! It has probably taken a good 5 months to see a difference in her energy levels and also slight improvement in her physical abilities. Since about 4 months after diagnosis everyone seems to comment on how well she looks.
    She still has a bit of a tummy, but NOTHING like it was before. We still have partial constipation issues but I think now that is related to some other foods she is sensitive to, but there is still definite improvement.

    Someone above mentioned their child had bumpy skin on the back of their arms. I noticed this with my daughter, I will have to check tomorrow to see if it is still like it. To me it resembled permanent goosebumps.

  315. mj

    hi,
    I am wondering if anyone has ideas out there…
    my boyfriend was diagnosed as celiac just by the high antibody and low iron levels a few weeks ago. He opted not to do the intestinal biopsy. So first of all we aren’t sure about the accuracy of this diagnosis? He had stomach pains and gas, tingling/numb feet, and low energy for years.
    However, now that we stopped eating gluten, it has become much worse! He has spent days at a time in bed, with pretty much constant diarrhea. All his stools float, and there has been fresh blood as well as blackness we think must be old blood from higher up in his system. Mucous most of the time, and mostly undigested food. Does this ever happen as people’s bodies are adjusting? Or could he be allergic to anything else? We are pretty much on a white rice, steamed veggie, plain meat diet. He drinks almond milk sometimes too. And takes probiotics (supposedly allergen free) and papaya enzymes with meals and multi vitamin. Does anyone think the meat may be hard for him to digest? The thing is, before now, he ate lots of gluten and meat and all sorts of things except dairy (which he thought he was allergic to). And now that we have pretty much eliminated things it is SOOO much worse. I don’t want him to give up on this diet, but is this normal for anyone here? Could he have something else? Or an intestinal ulcer coming at a really coincidental, inconvient time? Thanks!!

  316. Tanya Horgan

    Dear MJ,

    It takes on average 6 months to a year for the small intestine to heal from celiac disease so symptoms will not clear up overnight. Your boyfriend could have other conditions such as ulcerating colitis as well. I’d highly recommend that he have a small bowel biopsy and if necessary, a colonoscopy. I regret my decision not to see a gastroenterologist nearly 2 years ago.

    My father has celiac disease and was diagnosed 37 years ago with it when I was a child. As a first degree relative, I have a 10–20% chance of having celiac disease.

    I had debilitating arthritis which started nearly 3 years ago that presented as rheumatoid arthritis (RA). I was diagnosed about 3 months later with suspected rheumatoid arthritis due to inflammation in the eyes that commonly occurs with RA. About 4 months after this diagnosis, I started having problems with the medication I was on (Plaquenil which is an anti-malarial drug). I saw an on-line posting by a woman on Plaquenil who had RA for 17 years and went into total remission on a gluten free diet. At that time, I didn’t realize that there was an association with joint and muscle problems with celiac disease. My father was diagnosed years ago before all of the advances and understanding of the varied symptoms that are seen with celiac disease today.

    The rheumatologist I saw at a hospital in Toronto knew nothing of the association and suggested maybe it was irritable bowel syndrome (IBS) as there is an arthritis associated with IBS. I had been eating gluten free for a month and had seen significant improvement.
    I opted NOT to take the rheumatologist up on the referral.

    I had been through a lot years before and thought this was just one more misdiagnosis. I had been through major lung problems and lung surgery in my early 30s where a diagnosis was originally asthma that changed to tuberculosis (symptoms are similar including the coughing up of blood) to the real diagnosis of large holes in my left lung and a fungus ball growing in one of the holes in the lung.

    I realized months after turning down the rheumatologist’s offer of a referral that I probably had celiac disease and had no gastro intestinal problems the way my father had presented with celiac disease (drastic weight loss, diarrhea, bloating, gas, etc). I react to gluten free oats (Bobs Red Mill) and like my father, cannot tolerate the protein (avenin) that is in oats.

    I had a couple of incidents of gluten ingestion due to cross contamination and symptoms of stomache cramps and brain fog (cognitive issues) happened quickly. I decided to see a gastroenterologist. As I had been eating gluten free for 15 months, he suggested a gluten challenge. I did a gluten challenge 3 days prior to the preparation for a small bowel biopsy and colonoscopy. The small bowel biopsy showed I did not have celiac disease. It was later suggested to me by an expert in the field that this was a misdiagnosis as the microscopic damage that would started to occur could not be seen without an electron microscope (which is not always used) and that the damage to the villi in the small intestines can take months to occur. I paid for the gluten challenge for weeks after.

    I am convinced I do have celiac disease due to all my symptoms and believe my small intestine had healed.

    I had something called histamine intolerance (the body can’t process the histamine that naturally occurs in food so that the amount in your body builds up and you produce allergy type symptoms). The majority of the DAO enzyme in your body is produced in the small intestine. That cleared up after about 10–12 months on the gluten free diet.

    The worst part about the small bowel biopsy / colonoscopy is the day before when you need to drink the fluid and go to the bathroom. The actual procedure was actually not so bad as you are heavily sedated. I have had broncoscopies (prior to lung surgery) and have had sinus surgery and the small biopsy and colonoscopy were the least invasive and inconvenient.

    On a side note about going gluten free, I decided to eliminate all gluten containing lotions, facial cleansers, shampoos, etc., that I was also using. I found this to be challenging. I was already making my own lip balm and foot butter.

    At a friend’s suggestion, I developed a line of gluten free skin care products and started a company. I think there are a lot of other people out there like me don’t want to slather gluten containing products on their skin. There are a lot of companies now producing gluten free food but not many doing an entirely gluten free body care line. I have just started presenting the line to health food stores in the Toronto area. An on-line catalogue in the US (www.shopbodyessentials) is carrying 3 items in their spring catalogue this year so I am hopeful.

    I wish your boyfriend the best of luck in his recovery. Life will get better for him.

  317. rochelle

    I have quite a few health problems. Tetralogy of Fallot (5 heart surgeries), splenectomy (car crash), 2 femoral artery repairs, thyroplasty for paralyzed vocal chord and then a few years ago I started having terrible stomach pain. Went to a ‘witch doctor’ who had me take lots of herbs and vitamins. Problems went away and now they have come back as of 6 months ago. Went to GI and discussed my symptoms in which she was extremely patient and talked for an hour. Bowel movement 5 times a day when it’s loose, or two times a day but painful (constipated). Always cramping, burning pain in the left side of my abdomen. In the morning I wake up and my stomach hurts. Eat breakfast and I go to the bathroom twice — about 15 minutes apart from each other. Headaches. I have psoriasis which could be related? Irritability, depression which came on VERY strong after car accident, extreme anxiety and feeling like I can’t focus or accomplish things.
    The very first thing the GI said after all this was it is just IBS and millions of people just have IBS. I told her that IBS was a total cop-out diagnosis and I was not satisfied. This comment did not sit well with her and she went on to explain that IBS is a real problem and it’s very common. (right — only because some drs. can’t diagnose anything else)
    Got blood tests for celiac, IBD, liver (3 cousins of mine have celiac and one has Crohns (sp?)) negative. Got contrast CT — normal. Got ultrasound of female organs. Normal. GI prescribed anti-spasmodic medication — took it three times and it did absolutely nothing. It’s suppose to relieve pain within 3 minutes.
    Prescribed glycopyrrolate (sp?) which gave me terrible chest pain. Colonoscopy which looked normal. Went back and was angry that GI let me believe Celiac could be diagnosed through colonoscopy when it has to be diagnosed through upper GI — endoscopy. Have endoscopy scheduled 4 weeks away. I went off gluten for 3 weeks between tests (after colonoscopy) and still had symptoms but they weren’t quite so severe. Now getting endoscopy and have to be on gluten so I am back to severe symptoms and GI still thinks it’s just IBS. In fact, she acted super annoyed that I wouldn’t accept this fact and told me, “I hope it’s celiac so that you can move past all these tests!“
    I am frustrated, angry, and I just want an answer. If endoscopy is negative for celiac I will still be going GF cause I know it will make a difference. Hope my diagnosis (almost diagnosis) journey is helpful for someone else out there! I am not a hypochondriac!!! And neither are you!

  318. Syd

    I am a 24 year old student who has a family history of celiac disease (mother’s side). I have eaten gluten up until age 21, and suffered from chronic abdmonial discomfort, bloating, fatigue and BRAIN FOG. The brain fog got to be so bad that I was failing all of my classes at one point in college (and finally linked it to eating 2 bowls of pasta/day and TONS of sandwiches or flat bread). When I made the decision to stop eating gluten, my whole world changed for the better. I no longer felt tired, or sick. I stopped taking three hour naps during the day, and saw the world through a more optimistic lens. I was strictly gluten free for two years, and decided to get tested toward the end of the two year stretch. My endoscopy and blood work both tested negative for celiac disease, and I was really discouraged. It turns out that being gluten free for so long prior to getting tested resulted in my negative test results. Since then, I have remained gluten free, but sometimes I succumb to the weakness of pizza and end up paying the price. My most recent symptom has muscle aches and extreme mucus production from my sinues. I notice that when I don’t eat gluten, my sinuses are clear and my muscles feel fine. But when I cheat on my diet, I feel run down the next day and can’t accomplish anything. How can I stay strong and not give in to my cravings (especially when I’m in public and there’s nothing g-free to eat)???? Please help!

  319. Holly

    I was sick all the time as a kid and as an adult. If you had a cold and came within 2 feet of me I would catch it. Then several years ago, blood sugar problems. Hypoglycemia to be exact, which I know, most people think is a joke, but the way I felt was not. The hypoglycemic specialist told me I had to eat meat proteins with every meal. I asked about bread and she said whole wheat was better. After months of eating too much meat, I cut out gluten after reading some blogs. The hypoglycemia went away completely after about 4 months. Then I went to Italy for 3 months. I felt fine until I came back and then one day the numbness and tingling in all 4 limbs and my mouth started. Along with brain fog. And irritability and anxiety. I was told I had a vitamin B12 deficiency. Then that I probably had MS by an acupuncturist because I fell over when I stood on one foot with my eyes closed. After a brain MRI and a few trips to the neurologist, that was ruled out. Then the extreme neck pain began. I decided to get rid of the gluten again. It’s only been a week but I no longer wake up in the middle of the night because I can’t feel an arm. And my other joints are beginning to feel better. I hope it’s the gluten! I want to feel better again. PS When I bring up a possible gluten sensitivity to any doctor, they all chuckle to themselves. Not one of them has even acknowledged that it’s a real disorder. Did anyone else have symptoms like these?

  320. Lora @ Crazy Running Girl

    I just stumbled upon your blog and I am so happy that I did! I have been suffering through every GI symptom under the sun since last Sept/Oct. But right when I would get up the guts to call the doctor (I hate going to the doctor), I would start feeling a little better so I would just assume things were OK. I had constipation, and when I didn’t, I had diarrhea. I had constant stomach pain, gas, bloating, etc. I guess I had a huge red flag when I went wedding dress shopping and they took my measurements and my stomach measured at an 8 when the rest of my body is at a 2. I started thinking that maybe there isn’t something quite right (considering I run about 40 miles a week and eat relatively healthy). It wasn’t until a few weeks ago when I felt nauseous for four days straight (not the flu) and couldn’t get myself to eat when I realized that there was something seriously wrong. I went to a GI doctor and all he did was order a series of tests (after sitting in his office waiting for my appointment for an hour and a half. That doesn’t go well with someone who hates the doctor as much as me!). I did blood work and a CT scan, which took me three days to get the results back to him because he was too busy to return my calls. He said my blood work showed I was fine and that I needed to do more tests – colonoscopy and endoscopy – to figure out what was up. He said it was “up to me” … I felt like exactly like you said, that he felt like my symptoms weren’t real. I was sick of feeling like crap so I decided on Monday that I would just stop eating gluten and see what happens. It’s been four days, but I feel SO MUCH BETTER!!! It’s incredible. My stomach no longer hurts, the bloating has gone down, I feel like I have more energy and I had some “normal” bathroom results for the first time in as forever as I can remember. I know I have a long way to go to let my body heal from the damage, but so far it hasn’t been so bad to say goodbye to gluten. I think I was subconsciously avoiding foods because they caused so much pain anyways.

    Anyways, thanks so much for sharing your story and for having such an amazing blog with so many great recipes!

  321. Christine

    so glad I stumbled upon this.. My Dr put me on Thyroid med’s 6 years ago and instantly gained 60 lbs.. yes within 6 months 60 lbs that I can’t shed… I even joined a gym I exersised, dieted and nothing not an ounce… Long story short 2 weeks ago talking with a new friend she told me that most people with hypothyroidism have gluten allergies so I said what the heck.. Last night she checked on me and I realized for the first time in years I didn’t have acid reflux… and hadn’t had it for over a week… my question is how long do you think my other symptoms will take to clear (I have granuloma annular) nice skin disease which looks like nasty ringworm… this I noticed has started to reduce in size (have had for over 5 years) but as for the weight gain, arthritis in my hips, allergies,ohhh did I say WEIGHT GAIN????? its funny how my doctors never told me to try gluten free, its really not that devastating… as if you already are watching what you eat its just a shift in what you buy… the food isn’t bad at all.

  322. Mandi

    I discovered my gluten intolerance after a friend almost died from gluten (malabsorption). She actually tested negative for Celiac but even her doctor said it was obvious that she shouldn’t eat gluten. Her life changed and she became a big advocate for going gluten free… she even started a support group in our city. One day I was bored and clicked on a link she posted on Facebook and thought “Oh no! I have MOST of these problems!” So we made a “date” to talk about it. She gave me a list of 10 symptoms and asked which ones I had… I had 8. She said if people have 3 they are supposed to see a doctor about gluten.

    My symptoms: Iron-defenciency anemia, constipation, diarrhea, swollen abdomen, gas, heartburn, acid reflux, itchy and rashy skin, restless leg syndrome, migraines, foggy brain, infertility, feeling like I am getting the flu but never do, achy bones, car sickness, unexplained moodiness, unexplained weight gain (like 30 pounds in 6 weeks) and unable to lose it, fatigue and painful gas. I may have missed some in there ;)

    I haven’t been eating gluten for about a year but only got serious to NOT CHEAT the last few months. I feel so much better when the gluten is out of my system. No itchy skin, no feeling like I need to nap every time I eat, no migraines, normal and regular poops and just an overall feeling of being healthy! Now, if I eat even a little amount of gluten I can either feel like I’m getting the flu, or get itchy and rashy skin again or have constipation followed by diarrhea… or I can get all of it.

    I never did go to the doctor because I thought it was obvious gluten was the problem so I have no idea if I have celiac disease or if it’s just a gluten intolerance. We are working in the Caribbean for two years (as missionaries) so I don’t think I will EVER get a diagnosis. I’m not sure I want to eat gluten again just to see.

    If anyone is reading this that is just starting, my advice is don’t give up! Don’t beat yourself if you cheat or if you accidentally eat gluten. Just move on and try harder. Once you get the hang of not eating gluten then you stop even thinking about it. (Ok, I’d really like to have a Guiness). After a year of being gluten free (more or less) I became a vegetarian too!

  323. Sue

    My 9 year old son has suffered from chronic migraines for the past 3 years. He had them 2–3 times per week to the point of being sick. We’ve had his eyes checked numerous times, he’s had brain scans, and was evaluated for dehydration and neurological disorders. His pediatrician said that it was stress related and gave him an antihistamine to take at night. His eye doctor said that it was eye strain and gave him glasses to use while watching TV or while on the computer (even though his eyesight is normal). I didn’t use the medicine with him, or the glasses. I knew that there was something more going on. Why is an otherwise happy, healthy 9 year old boy getting migraines?

    Finally, I took him to a naturopath. He ran several blood tests and found that he is sensitive to gluten. He was also borderline anemic and deficient in Vitamin B12, Folic Acid and Calcium, despite the fact that he eats very well.

    He has been off of gluten for a month now and his migraines have drastically reduced. He has more energy and is sleeping better.

    His pediatrician warned me not to take him off of gluten, since my son did not test positive for the celiac antibodies. He said that he doesn’t believe in a “gluten sensitivity”…“you either have celiac disease, or nothing.” It’s not logical to think that people can’t have a gluten sensitivity or intolerance. You can have sensitivities to all kinds of things, like chocolate, eggs, milk, red wine… These things don’t all have to cause severe allergic reactions in someone who is sensitive to them, but can cause a whole host of other things, including migraines. Needless to say, the naturopath is now our family doctor and my son is no longer going to this pediatrician.

  324. Heather

    I have dealt for years where I would get nauseated and sick at my stomach after eating, migraines, mood swings and had numerous upper respiratory problems but since last November it has gotten worse and about a month ago it got even worse stomach cramps,vomiting, diarrhea, gas and fatigue but I was gaining weight and bloating. I thought maybe it was lactose intolerance but even taking the lactaid and switching to soy milk didn’t help I went to er 2 nights ago and even after having iv 2 shot of zofram and a shot of phenegren i was still throwing up and having diarrhea, migraine upset stomach all the dr said was maybe it was an allergy go see a gastroenterologist I feel like every time I go to the dr they think I’m making up stuff and med seeking I just want them to tell me what is wrong my husband is military and in afghanistan for a year we have 3 children (10, 5 &2) and I am taking care of them on my own I hate when i have to depend on my 10 yr old to help me so much because I’m sick to the point I can’t leave the bathroom or bedroom. So tonight after having to change clothes 3 times cause I shit myself while sleeping I decided I would do some searching on my own and came upon your website and it has really given some insight as most of the stories I have read on here sound just like I have felt. It is also nice to know I’m not alone and it is not all in my head. I am going to call my dr in the morning.

  325. Kimberly

    Since about late 2008 I noticed that whenever I ate anything that had wheat gluten in it my throat would itch. It seems to have progressed to ears itching as well and a possible feeling of my throat feeling swollen. It could all be in my head since I am scared of having a severe allergic reaction to what I eat. I finally went to my doctor Monday and talked to him about this issue. Oh and my older sister also has celiac disease and cannot eat anything dairy. My doctor freaked me out when he told me that gluten was in foods that didn‘t list that they contained wheat gluten. So I have not had any wheat or anything else with gluten since then and I have been feeling so weird. Sleep is not being a friend to me and I just plain feel odd in my body. Its like a mix of having so much energy with no outlet along with whatever else. I used to have really bad constipation or it would just take forever and hurt for me to go but now I have no issues except I keep having to go today. Sadly no decrease in gas. I go down Monday to get allergy blood panels done. It kinda feels like my body is awake I guess you could say. Has anyone been through this same experience? I‘ve been asking my sister questions but she doesn‘t have the exact same issue. If my tests come back as negative should I still stay off of gluten and take my 2 year old off of it as well? All he ever wants to do is somewhat play with his toys but watch tv more than anything. Any advice will be much appreciated.

  326. Tilley

    This is absolutely fascinating reading. I’m not done yet, but I thought I would throw in my two cents worth while I’m at it.

    I’m not sure at all that I am gluten intolerant, but I stumbled on some websites about it earlier this spring when I was realizing that I started out each day feeling fine, but then by mid-afternoon would be so bloated I had to unbutton my pants, and even then, I had a lot of discomfort. I was also having nightly headaches. So I tried going GF, and that completely disappeared. I did a “challenge” this weekend though, and deliberately had a gluten day (bagel for breakfast, and chinese dumplings for supper), felt extremely nauseous that evening, one burst of violent diarrhea, and then no other GI symptoms, but no energy at all for the next three days, and niggling pains in my abdomen that I hadn’t experienced since going GF over a month ago. I’m not convinced.

    But then reading all of everyone’s stories, and thinking about my past. I had frequent stomach aches as a child, embarrassing bouts of diarrhea. In high school, I had abdominal pains that the doctor never could figure out, and my mom told me that “aches and pains were normal,” and then in graduate school I was diagnosed with a “spastic colon” and told to meditate every day and never eat a piece of white bread again. It eventually got better, but I’ve had other periods of time when my guys have been very very tender, and then this past year, when my stress levels were rocketing because of a nasty work situation, I inexplicably gained 30 pounds despite continuing the daily exercise I’ve done for years, have had lots of headaches, have gotten sick repeatedly (after years of never getting sick at all), have almost constant (but not severe) abdominal pain, occasional very severe abdominal pains, and have been bloated almost constantly, and the idea of being gluten intolerant doesn’t seem all that crazy.

    So after that “challenge” day, I went back to GF eating, and we’ll see what happens.

    I’m also thinking my 19-year-old son who suffers from depression, and spends much much time in the bathroom, may also benefit from a GF diet, though when I mentioned it to him, pooh-poohed it, but perhaps he’ll think about it again.

  327. Clacey

    I replied to someone way above on this thread but wanted to post here too to share with the more recent comments of readers. My gluten (plus) experience.… I had NO idea I had a gluten sensitivity (nor did I know I had them to egg/soy/dairy/yeast!). I had other allergies that caused throart-closing, but I suspected that was to live cultures; I had gone down to eating nothing and just adding things back….so I knew more of what I could eat rather than what I could. Nonetheless, I lived this way adding foods back in as I went along. I didn’t think of any symptoms other than throat-closing or hives…i.e. I was only worried about emergencies, not whether eczema was acting up, etc..

    So my symptoms before discovering the gluten sensitivity were eczema and the associated itching that went along with it. I would also get this wheezing occasionally here and there (maybe once every few years?) around early Spring which lasted for three days and other occurrences of it here and there — which I attributed it later to dust or the food allergy that would later get more severe and go to full blown throat closing. I just assumed that this was what it was; I could have been wrong. Whatever the case, gluten didn’t bring it on. I think now that gluten has just weakened my system over the years and may have made me more susceptible….not sure yet! I came up positive through skin testing (many years ago) of being allergic to a lot of trees, some foods (that I ate) and some animals. The foods I tested positive too were ones I could eat with no obvious symptoms. My eyes got itchy A LOT; I had since found antihistamine eyedrops which I still carry with me despite my resistance to just about every other Rx drug around.

    I started having problems where my vocal chords would close all of sudden; it happened three times over the course of about two years. Scary! I knew it wasn’t my allergy — this was muscular. It would usually last less than a minute but was terrifying — no air in nor out. Doctors didn’t seem to know about it — I asked several. After months of asking and searching online, I finally heard the phrase “laryngeal spasm” which I googled and came up with a website that discussed VCD (Vocal Chord Dysfunction). I found a specialist (ENT) who said yes that’s what it is; but VCD can be caused by any number of things. The ENT said for me it was likely silent reflux — YES! Like babies get…which sometimes causes colic in them?….It goes undetected often because sometimes you can’t even feel it and nothing is coming up, etc.. It’s higher than heartburn, which you feel. So basically, I had had silent reflux which was aggravating my vocal chords for years. Perhaps it lead to weaker chords, not sure, that part I’m still working out. But one thing that happens with this “high up” reflux is that it hits the chords and sometimes it causes them to close. Thought my doctor simply told me to avoid acidic foods, a lovely person online told me to test for gluten; we spoke indepth about all I had experienced….I said it can’t be gluten. Well, I tested — and through stool testing, not blood tests which can give you a false negative — and not only was I sensitive to gluten, but also found out soy/yeast/egg/dairy were also culprits. I gave up gluten first and felt more energy very quickly; I gave up all but dairy within months, and then dairy soon after….all over the period of 3 months or less.

    The result, I felt more energy for a while, but I don’t think I added enough back in. Within four months I noticed I had lost a bunch of hair; it was hidden behind my ear; I was in shock. I had cortisone shots to get it to grow back. That was a year ago; I’m still seeing strips where my hair is falling out. I really think it’s nutritionally related. We are still trying to adapt to the gf/df diet, and it has been difficult finding organic and non-GMO foods that fit the bill…..unless everything we make is from scratch.

    My husband and kids tested a year later; low and behold my husband who eats everything has a celiac gene and a gluten sensitive gene; he gave up gluten and the headaches he had since he was tiny were gone in less than three days! Sinus issues and the need to hit the bathroom multiple times and for a long time disappeared; he also said he had more energy and no brain fog. He never thought anything of these symptoms — he thought they were just the way he is, etc.. One of our kids has his celiac gene and my gluten sensitive gene; he also no longer spends much time in the bathroom, is not gassy either. He also had dry skin on his arms which you could feel but not see…not eczema but dry patches. We gave up dairy and — gone! Our other (breast-fed) child stopped snoring within a day of me giving up dairy.

    I’m still struggling, though. I still breast-feed, so that may be part of it, but this hair loss thing is really bothering me. I also notice that my arms and hands fall asleep more often when I’m lying in bed, and I notice pain here and there in some of my joints (ankles calves wrists) at times. What is that?!

    And overall, I think SUGAR plays a big part in the Vocal Chord reactions — if I overdo it on the sugar, I can feel that feeling of possible vocal chord threats. And, I also notice canker sores in the mouth after eating sugar.

    Eczema has been minimal after going gf/df/sf/ef/yeast-f!

    HTH. Thanks for the blog!

  328. Patsy Mason

    Hi. I would just like to share my story and hope it will help others find a solution to end the misery of being in constant pain. For over 10 yrs. I have battled with joint pain especially knees,back/neck and hands.…finially being diagnosed with Polymyalgia Rheumatica..along with worsening joint pains I had varied symptoms of bloating and swelling in the abdominal region, legs and hands…infact my whole body felt like it was an allien and my muscles felt unconnected. Despite having several tests for Celiac/gluten intolerance the tests were all clear????? So I continued to eat bread/pasta and take-aways thinking my problem was my curved spine and muscle problems. After being sent to various specialists for my back and polymyalgia and undergoing accupuncture &various pain remedies I was becoming more and more immobile due to worsening knee conditions and difficulty in climbing stairs or bending. The pain was unbearable even on strong medication and this left me feeling helpless and despressed. This affected my emotional well being also and my moods were all over the place and despite always previously being a positive person found myself being miserable, negative and not like myself at all. Although going from a size 10 a size 14/16 I could not loose weight no matter what I tried. Then in desperation I decided to go on a diet devised by Giraud W. Campbell (after purchasing his book for 10p in a charity shop of all places )quite a few years ago…it was to eliminate arthritis.…strangely the main change was to completely cut out GLUTEN and CAFFEINE. Starting with a 24hr. water fast and then just eating pure raw veggies and fruit (not citrus)…liver…(not if have gout), chicken organic if possible and fish.……after 1 week gradually introduce other foods. The key was NO GLUTEN OR CAFFEINE OR PRE-PACKED FAST FOODS WHICH CONTAIN NUMEROUS ADDITIVES AND CHEMICALS and take cod liver oil. After just 3 days the swelling in my body had virtually disappeared.…my joints were remarkedly improved and my head felt clear not confused. I am now walking up and downstairs easily have no pain and my swollen aching joints are going back to normal. I have more energy the weight has dropped off me and I am feeling literally re-born again as the change has been, for me remarkable. I know we all react differently and have varying symptoms but my point is listen to your own body and even if tests and Drs. disagree to a certain extent we are all responsible for our own bodies and need to listen to that inner voice when it tells you something is wrong.Working along side therapists/Drs. and using our own instinct can often find the correct solution for our health problems. Often we can find a solution where “normal scientific tests” fail to discover the source of ill health. I was sick of being ill and in chronic pain and embarked on a self elimination trial which paid off so I hope my story will help some find good health once more..patience and perseverance is required. Good luck. Patsy

  329. Heather

    I’m totally sold on the gluten-free diet. I tested negative for Celiac, but I hadn’t been eating gluten for six months when the test was done, so based on the information here, maybe the reading wasn’t accurate. I don’t really care, because life without gluten is so much better, in all the ways mentioned above.

    I Just wanted to mention how I ended up identifying gluten; some people mentioned an elimination diet. I used to get bouts of the “stomach flu” or “intestinal flu” that were really bad, with pain so severe that I would pass out. One particularly bad bout lasted for two weeks, during which time I was unable to eat anything or drink anything except water. I lost 12 pounds, but actually, I felt much better in many ways when I wasn’t eating anything, even though I was still sick. This made me realize that something I was eating might be the cause of my fatigue and illnesses. As a result, when I started eating again, I only ate one thing a day (I couldn’t eat any more anyway). I started with yogurt, and added one item at a time, until certain foods caused a reaction. These foods were wheat, soy, potatoes, and salt. Now that I stay away from these foods, I feel incredibly better, just as many people here mention.

    The thing that bothers me is that food labels still don’t indicate clearly whether there is gluten. It’s very frustrating. For instance, I used KC Masterpiece BBQ sauce a few weeks ago, and was sick with the old symptoms. A search of the label and online turned up very little except for other people who had the gluten reaction from it. No word from the company that it contains gluten could be found anywhere, but the label does say “modified food starch”. I’ve had similar reactions to other prepared foods. In order to stay gluten free, I basically have to make everything from scratch, which is what I’m doing.

    I don’t miss wheat and other gluten foods at all, so for anyone who might be wondering whether to try it, I definitely recommend trying out going gluten-free if you have health problems. It didn’t work instantly, but took about two weeks to feel better. If I accidentally eat gluten now, it takes a few days to a week to get over it. If you can stay away from gluten for two to three weeks, you’ll be able to tell if it helps.

  330. Tamara Glennon

    I am so happy I came across this website. My kids and I are on day 5/6 of the gluten free diet. I don’t notice huge differences but I am hopeful! I have battled stomach “issues” for 12 years (i am 32). I have had every test done including endoscopys, colonoscopys, tested for celiac but it was negative (I had eliminated most gluten before the test though) and ended up having gallbladder disease and had it removed when I was 21. After that I was still having issues with frequent diarrhea. When my GI doctor heard that I was still having issues his remark was “Oh maybe we shouldn’t have taken it out”. I have also had severe depression, horrible mood swings (diagnosed as Bi Polar type 2), IBS, Migraines and tension headaches. Overall I just feel yucky all the time. My kids have a varied amount of problems. My daughter who is 9 was diagnosed with early on set Bi Polar type 2, has “stomach pains” and her GI doctor found nothing wrong and chalked it up to being “anxiety”. My 4 yr old son has ADHD symptoms. So far my youngest son who is almost 2 doesn’t have any noticeable symptoms but we are doing the GF diet with him as well. My husband is not on board with the diet which is very frustrating. he is a carb-aholic. I find it very frustrating that when I tell people that I am going GF, I get a sympathetic “oh you have celiacs” and when I go on to explain that I don’t and I want to try to eliminate certain symptoms, they look at me like I am crazy or stupid. It is very frustrating and it makes me feel like I am going crazy and then I second guess myself. I feel like I am seeing a small inprovement in my sons ADHD symptoms but I am not sure if it is wishful thinking. My daughter though has gotten worse since eliminating Gluten so I am wondering if maybe she is detoxing and it will take a little longer to see results.
    At any rate I am optimistic that I will see results and that I can convince everyone that I am not crazy for wanting to try to be GF!

  331. BPWinTO

    My daughter is currently 15. When she was very young (before 5) she got occasional unexplained stomach pain. She also had bloating and gas from time to time. We didn’t think much of it. She inherited it from me, and I hadn’t really stopped to think that my own bowels were anything unusual (I will be tested for celiac soon). She also had occasional reflux — baby barfs as she called them. She has been an endurance athlete forever (cross-country skiing and triathlon) When she was around 10 she was diagnosed with exercise induced vocal cord dysfunction. (sometimes in cold races in winter, during tough hills her larynx would close instead of open). Doctors felt this might be triggered by reflux and she was put on Prevacid.

    Then when she went though puberty at 13 she grew rapidly and at the same time developed migraine headaches. Over the next two years her athletic performance tailed off, slowly at first, then rapidly as she approached 15.

    Just before turning 15 we realized her Ferritin (iron) levels had dropped to a very low 9. She went on a heme iron supplement (almost double max dose) but after the next 7 weeks they dropped to 7. At that point she was having very severe headaches almost every day. She was not falling asleep at night and when she did she was waking up often. Her sleep was terrible. Because of the malabsorption my research indicated celiac was a possibility that should be excluded. The doctors effectively laughed that off. I researched further and discovered other possible symptoms that applied to her: onset of irritability, poorer ability to concentrate, symmetrical white spots on her teeth, occasional black rings around her eyes, easy bruising and easy tiring when walking. This, coupled with the incredible iron loss (especially while on a double iron supplement) convinced me that Celiac was a very real likelihood. Still the doctors laughed that off, pointing out that she was generally healthy, fit and strong and didn’t have regular diarrhea etc.

    One doctor did agree to have the blood work for Celiac done. She tested positive. Prior to the test coming back my daughter had already started a course of iron shots and already has lost the headaches and sleeps well through the night. (we suspect that the iron and magnesium malabsorption was responsible) We haven’t had her scoped yet — we might not. If we can get the scope in 2 weeks, we may do it. We would rather start a gluten free diet now.

    Clearly her symptoms were mild when it came to the “stomach discomfort” issues. Nevertheless the malabsorption issues were very serious. It seems, however, that doctors don’t want to look at Celiac as an option unless there is malnourishment and regular diarrhea. Unfortunately it seems that the Celiac range of symptoms is just too broad for doctors to deal with.

  332. RaDonna

    I am 42 and expecting a baby! I have had some strange symptoms for years now. My husband would jokingly call it paralitic shellfish poisoning when I would eat and wake in the night with numb arms and a racing heart and rush to the bathroom that made all of the symptoms vanish. Seemed pretty odd to me and reserach revealed nothing, the Dr. suggested a cardiologist, and looked at me more like I had lobsters crawling out of my ears. Pregnancy made the symptoms bad enough for me to determine the problem, eat wheat:: get rash all over face, the hershey squirts, numbness, abdominal pain. I am glad I found out, my baby deserved the best I can give her or not give her! Thanks!

  333. Misty

    I am 39 and have suffered from stomach problems literally for as long as I can remember. When I was 8 the doctor theorized that I had the beginnings of ulcers and put me on daily doses of antacids. When the serious abdominal pain would hit, I would cradle my bottle of Maalox and do as he said, eat crackers, to “absorb the acid” that could be heard gurgling inside my belly (it was like a tsunami inside). This went on until I was in my 20’s. At that time I was given different pills from different doctors, but still no real tests were ever done. I remember once, at about 15, a doctor from Kaiser, slamming my file down on a table and telling me that “this had to stop”, referring to the number of times I was coming in for the pain I was in. After my first child was born, the pain intensified and I told my new doctor I needed relief and wasn’t taking no for an answer. He prescribed Bentyl and told me I had IBS. Bentyl knocks me out and soothes the pain, so I thought maybe he had the answer. After reading all of this, I think I may have been wrong! The cystic acne and redness I’ve suffered with in my face for over 20 years, the pain that I suffer from now (which they’ve recently diagnosed as Fibromyalgia, although it doesn’t fit the normal guidelines) the early menopause (15 years early) and the constant White Blood Cell test that comes back as “slightly elevated”, but no doctor has ever been able to figure out why it’s elevated. I think after I’ve tried 6 weeks of gluten free or have been tested, I’ll finally have my answer. I just feel in my gut! Awful nice to have that feeling in my gut rather than the feelings I’ve had for nearly 40 years. And none too soon either, as my daughter is showing all the same signs that I remember as a child. Additionally she has allergies, asthma, rashes, hives, etc.
    Thank you for the website!!!

  334. Rachel

    My 22 year old daughter has just begun trying to live gluten free. She had what I see most of you had in your posts. Also had her gallbladder removed several years ago. She has one symptom none of you mentioned. She suffers from extreme belching. It is very loud and embarrasing for her. I would say she belches sometimes 20 times per hour. Does anyone have a similar experience?

  335. Em

    I always uffered immediate bloating and pain after eating. My stomach would get hard, sometimes as if there was a rock lodged in it. I was constantly either constipated or had diarrhea, and had very little energy. I had inexplicable darkened skin coloring around my eyes. My skin often looked grey. I would sometimes have sudden sharp tingling in my shoulder or joints, and later was getting frequent headaches.

    I was tested for celiac (I live in Europe, where celiac is more common…or perhaps simply more readily diagnosed), but it came back negative. The doctor chalked it up to me being stressed, and ‘maybe’ with a possible ‘sort of’ irritable bowel syndrome.

    Then I split with my partner of 4 years, and started seeing someone new. Within a few weeks, my symptoms were gone. SEE! Everyone said, you were stressed by your relationship and now because you’re in love with someone new, it’s all better!

    I actually thought so too, for a bit. But then it occurred to me what had actually happened (er…no disregard to the powers of love, of course!). My new boyfriend had celiac. Because we often ate together and cooked for each other, I had simply gone gluten-free to avoid the trouble of double pots of pasta, etc. He was shocked at my willingness to do so, but I didn’t mind and it wasn’t a hassle. Not eating flour also meant that I avoided my usual sugary vices (chocolate croissants! cookies!) and I lost weight, losing also the constant feeling of being bloated or with a heavy stomach, and lethargic. Even my periods stopped being so crampy and heavy. Friends commented on my improved skin. I felt amazing.

    This new boyfriend and I eventually split, but I remain gluten-free. I feel wonderful, vibrant, healthy. The difference is like that of night and day. I guess I ‘just’ have gluten sensitivity which can’t be diagnosed the same way celiac can…it doesn’t matter to me what the name of this is though. I would recommend everyone go gluten-free for a couple of weeks, just to see how you feel. It is so worth it, to find out.

  336. Cecilia

    I have had dermatitis herpetiformis since I was 14 years old, I just didn’t know what it was. I´ve seen almost every dermatologist in my country. No one ever diagnosed me with this sickness, I was diagnosed with anything but DH. The only medication that helped was corticoids but after one week of non use of them the rush came back. I also suffered from gases. Belching and all the stuff were part of my living thinking it was normal, even if my friends never complained from suffering from it. After giving birth to my twins, I started to feel very very bad. I couldn’t explain it to anyone, I just felt bad. I couldn’t get up in the morning because I was so tired, no matter how many hours of sleep I got. I couldn’t concentrate, I felt so useless, so lost. I related it to post delivery depression. My skin rush got so bad I couldn’t even wear anything but cotton and long sleeves even in our hot summer. From neck to knees, my whole body was covered in small bumps that itched like hell. I scratched them until they bleeded and then scratched the injuries since the itching was imposible to control. I even used to cry because the itching was so terrible I didn’t know what else to do but crying. Then, in December I started to have diarrhea alterned with constipation. I couldn’t have any meeting or social activities because of the gases, my husband used to laugh about it but I find it so unpleasant and embarrasing. I thought it was IBS, but when the gastro asked me if I got the pain and diarrhea at night, I remembered running to the restroom almost every night. When he heard this and then looked at my skin, he told me I probably had celiac disease. I also was diagnosed with Hashimoto’s hypothiroidism. My bloodtests turned out negative, but my skin biopsy was positive. I started to eat gluten free and take Dapsone for about three months now. The difference is so amazing! My skin is almost entirely recovered with no corticoids, I stopped suffering from gases and intestinal spasm, my periods are normal, I don’t loose hair anymore, I can concentrate, I wake up with energy, I enjoy working and all activities in general. It changed my life to finaly know what was wrong with me.

  337. kylie

    I have just been recently diagnosed with coeliac disease. For around 15 yrs I’ve suffered from chronic aenemia & over the years have had iron supplements & infusions &iron shots, plus b12 shots 2 help absorb the iron in my food. I have always felt unwell, but 6yrs ago I had breast cancer so then it all got put down to my chemo & radiation. I then had a hysterectomy 3yrs ago & my breasts taken & reconstructed, so then it was put down to the operations. After 2 more yrs of infusions, I was suffering alot of pain again & bloating. My breast specialist then decided to make sure there was no bowel cancer & sent me to a specialists. After having a colonoscopy my specialist asked my doctor to take a blood test for coeliac. It came back that it was a highly suggestive for coeliac so back to the specialist for an endoscopy. I’m still learning how to eat gluten free, but my energy levels are better. my iron & folate levels are fantastic. I’ve lost 5 kgs( I was putting on unexplained weight that got put back to my hysterectomy) which is helping me with my confidence. I can start to go out without fear of spending an hr on the toilet.

  338. Erica

    Just came across your website, and it has well i think answered my issues. As soon as i get back home I want to go in and get tested. What exactly do you tell them? I know i have it I just know it, and i have gone through doctor visits more then i have been to school i am only 19..

    1. Silvia

      If you are still eating foods with gluten I would ask for a Celiac profile. If you have been off of gluten for more than 3 months I would ask for the genetic test HLADQ2 and DQ8. I went to Acessalabs.com and ordered my own labs. Then took them to my doctor. It is out of pocket rather than being covered by insurance but it may be worth it. Some times you don’t find clear answers other than your own health improving. That is all you need. Peace of mind knowing or not if you have Celiac may be worth it due to all of the possible autoimmune diseases that come with it. Prayers.…

  339. Dagny

    I found your blog because I was looking for GF donuts. I do not know if I have celiac or gluten sensitivity. My personal guess is that I have a gluten allergy. I won’t ever eat Gluten again just to find out if I have celiac.

    My symptoms were SEVERE acid reflux, psoriasis, and infertility (PCOS). Since going off of it my GERD is gone, my PCOS is gone, and my psoriasis is 95% gone AND I have lost 15lbs. I will be reading your blog to its fullness to find things that I can eat.

  340. Silvia

    So appreciate reading how others have been through what I have. I am a Physician Assistant that has been recently diagnosed with Celiac. In school we were told this was a diagnosis limited to babies, part of our failure to thrive work up. So sad that so many are suffering the consequences of lack of understanding and proper teaching. Personally, I have had stomach (to add to a previous post about belching— totally understand), gynecological, thyroid, anxiety/depression, skin and musculoskeletal symptoms for most of my life. Watching my mother suffer with similar symptoms growing up made me believe this was “normal”. It wasn’t until I saw symptoms come up with my children that made me start to put all of these pieces together. I have 3 children and 2 have Celiac. My mother now has Primary Biliary Cirrhosis and I am sad to see how this disease has slowly torn her apart. Autoimmune diseases have insulted my mother, myself and my oldest daughter. We started a Gluten free diet when my son developed Dermatitis Herpetiformis in September. He cleared and so did many other symptoms. I finally ordered the Genetic test online because I had been gfree and thought the antibody tests would come back negative. I am positive for HLADQ2. It is amazing to me how 4 generations of women have suffered from this awful disease but am so grateful to be on the road to recovery and to pass on this knowledge to future generations. I have learned so much about nutritional deficiencies and autoimmune diseases this past year. I now understand why I was led into a career of healthcare. This will not stop with me. I intend to get back to work and help colleagues understand and hopefully diagnose many more Celiacs or gluten intolerant patients.

  341. Katie

    Thank you for your post– it was really validating for me, as I believe I have a gluten sensitivity, but not celiac. Everyone’s comments are very helpful, too.

    I have dealt with gluten issues my entire life, but had no idea what it was until recently through my own research online– any time I eat bread, pasta, cake, etc, I gain weight, feel extremely tired, have no energy, lower moods, etc.

    One quandary I have is sorting out gluten sensitivity from thyroid function…my mother has hypothyroidism, but I had a blood test about a year ago and they said my thyroid was fine. However, I am very skeptical since I have many symptoms of hypothyroidism. Can anyone explain this?

    I will say that I very rarely go to a dr and haven’t had a family doctor whom I see regularly since I was little. I generally just go to the ER or walk-in clinic when something is wrong because I’m generally not sick and I HATE going to the dr.

    Any advice/insight/suggestions would be helpful. Thanks!

  342. Katy

    Hi there everyone — a very interesting article indeed! :)
    I’m exploring whether or not a gluten allergy could be the cause of my increasingly severe stomach pain — it’s relegated to the upper right quadrant most of the time, causing my Dr. to think it’s gallbladder. After thinking about it, my two cousins (on both sides) have a gluten intolerance (one of which is severe CD).
    Just wondering if anyone has any personal experience with the gallbladder/gluten issue — any alternative to surgery is certainly preferable! I worry about having surgery and not feeling any better after.

    Many thanks!

  343. Christina

    I was just diagnosed four months ago and at that time I had thought I had no symptoms, but after reading through all these posts, I realize I have had many more symptoms than I initially thought!

    I was pregnant with my second when I developed a strange rash on my feet. If I itched them, they became burning hot and painful. It progressed to where every night they became bright red and burning hot to the point I couldn’t sleep. I got a dishpan of cold water and slept upright soaking my feet. At work, they were worse at the end of the day and it was too painful to walk in shoes. I limped a block to the parking ramp barefoot. Fortunately, as mysteriously as it began, it went away after three miserable weeks.

    He was born in March, and the following November my feet began to flare up again at night. Alcohol would really set them off. They were hot to touch, too. During the day my hands and feet would tingle. It never returned as severely, though, as when I was pregnant. After seeing every kind of doctor, many pricks, scans, MRIs, (including a negative Celiac blood test) through the next couple years, I was misdiagnosed with erythromyalgia. No cure, no treatment. After five years I went to an acupuncturist and his treatment somehow dispersed the heat throughout my body and made it more tolerable to sleep, but to this day I still wake up at night with hot flashes. He told me I was toxic and he couldn’t figure out why.

    Last November I began having problems swallowing my vitamins–they felt like they were stuck. My grandfather died from esophagial cancer, so I brought this to the attention of my internist who recommended an upper endoscopy. The GI doctor scoped all the way down to my small intestine where he found signs of sprue and took a biopsy. It came back positive, but another blood test came back negative. The genetic test identified the genes and resulted in my diagnosis.

    Five days after being GF I accidentally ingested gluten (a can of cream soda at supper) and the next morning woke up with tingling hands and feet. That night my feet were red hot–the first time since my acupuncture treatment. I was so relieved to have found the source of my ailment I cried. I gone seven years without knowing. Looking back, I had had bouts of IBS, especially after the birth of my first, but it went away.

    I’m still feeling tired and sluggish, having trouble focusing at work. I still wake up with hot flashes, too. I would say I had two weeks of feeling energized and really good right after going GF. I feel like I’m back to where I was pre-diagnosis. Not sure what the next step is. My next scope is scheduled in a couple months.

  344. Angela

    Thank you Shauna, I turn to your blog for encouragement when it gets too hard to avoid that delicious croissant or biscuit or whatever gluten temptation it is that we get bombarded with everyday.

    My symptoms before diagnosis were:
    – Unexplained weight-loss no matter how much I ate
    – Extreme fatigue and exhaustion all day, every day
    – Poor sleep
    – Dark circles around eyes
    – Daily diarrhoea
    – Pain in right hip joint and sometime other places
    – Excessive flatulence
    – Bloating
    – Sore belly

    It kept getting worse with time and doctors said I was either imagining it or had IBS.

    Finally I suggested gluten-intolerance to one doctor and they did a blood test: apart from some mild deficiencies there was no sign of Celiac, so it was dismissed.

    Then I tried one month of gluten-free diet, just to see for myself — HUGE difference and all symptoms disappeared within 3 weeks. I saw a gastroenterologist who said that’s a good sign to avoid gluten.

  345. Jill

    After several years of daily diarrhea, I finally realized that having a bowel movement every time I went to the bathroom was not normal. I was always tired, lots of hip joint pain, dark circles under my eyes, random recurring rashes, and, most confusing of all, how could I remain overweight with daily diarrhea for 5 years??? After multiple negative hypothyroidism tests, a full battery of GI tests, including a negative Celiac test, my doctor chalked it up to IBS.…meaning too bad, just deal with it. After starting Atkins to lose weight, I realized that my GI symptoms and the recurring rash on my leg went away when I wasn’t eating processed carbs. I knew I was negative for Celiac, but decided to give Gluten Free a try to see if I am Gluten-Intolerant. I’ve been Gluten free for about 1 week, and things have started to improve.

    I have a friend with Celiac, and I did what I’m guessing a lot of Gluten Intolerant people do, I basically said, yours is worse, I’m only intolerant, not Celiac. Lucky for me, my friend agrees with Shauna and basically told me that my intolerance was just as valid as her Celiac. I’m also on anti-anxiety medication and wondering if I’ll be able to stop once the GF really kicks in. I can’t wait to see how I feel in a month :). Thanks Shauna, your web site is definitely going into my favorites.

  346. Vanessa

    Hello from England! Shauna reading your story above is similar to how gluten made me feel. Your book was bought as a Christmas present for me a few years ago when I was first diagnosed. I feel like I’ve been in denial — til now. I adore bread, pizza etc I’m a complete carbaholic so finding out I could no longer have my favourite foods has been very hard to deal with. Its only after picking up your book and reading about grieving for the loss of gluten I realised I’m not being silly and that I 100% need to commit myself to living gluten free however hard it may be at times! It doesnt help that my fiance gorges on biscuits and pizzas etc and that my 18 month old gets to eat delicious toast smothered in butter but I have to deal with this and accept it.

    I was diagnosed in February 2008 after years with IBS which seemed to become much worse. I had terrible stitch type pains on the right side of my stomach a few inches below my rib cage, lethargic, illness after illness, excruciating gas and headaches and nausea. My blood tests came back normal so coeliac was ruled out by my doctor. I spent months and months suffering with depression and laying in bed either sleeping or watching TV. My job suffered etc. I begged my doctor to look in to this further and I was still diagnosed with IBS. Another year later I asked to be referred to a gastroenterlogist who was wonderful. He suggested I live on a gluten free diet and come back to him in 8 weeks to discuss my symptoms. I was so strict and felt a million dollars I had energy I went out with friends and enjoyed cooking etc. He diagnosed coeliac through diet alone and said I had been subjected to enough tests (MRI’s, CT’s, endless blood tests and a sigmoidoscopy) that the change in diet alone was enough confirmation for him.

    I was brilliantly strict until I met my fiance and had our first daughter. After that it has become difficult — money is tighter and my daughters nutrition comes first so I often neglect myself. I’m now pregnant with my second child and been less than strict with my diet and having had excruciating pain the past few weeks I’ve realised its just not worth it — for me and my unborn baby. Thats what led me to pick up your book for the first time since it was bought for me 3 years ago. I feel empowered already and I want to say thank you, I will be following your blog from now on and scouring the supermarkets for delicious gluten free ingredients that I can cook with. I’m trying to change my mindset into thinking — actually all this wonderful healthy gluten free food and I’m mourning the loss of beige coloured rubbish that poisons me? Nope not any more!! :)

  347. Hilda

    I was feeling awful for a long time and my symptoms got worse and worse until I just gave up on eating because of the pain it caused. I’m a big foodie and I had trouble fighting off depression as well as fatigue. My Dr. turned out to be very sexist and unconcerned. It wasn’t until a month later that a friend of mine (and a chef,) reminded me that my father had Celiac’s disease and it was considered hereditary. I couldn’t afford to keep going back to the doctor, so I just stopped gluten right away, and I feel fantastic. I wish I could have the blood work to prove it, but not hating food is enough for me. But this is only my first week in, and I can definitively use some advice on working within my budget.

  348. Lisa

    Wow, I love bread and dairy…but I have almost every symptom mentioned noooo!
    Stomach cramps, gas, lethargy, mood swings, I cant do much because I get tired very easily, intense pain in my neck head and muscles for over 10 years, tension headaches, migraines which I’ve had since I was a young child that were so bad I would vomit. Daily diaroheea/loose stools, I usually go to the toilet about 4 or 5 times a day and frequently experience the emergency toilet rush. I remember as a child asking why my body hurt and I was told they were growing pains. I am more usually in pain most days than not.
    I feel full quite suddenly when I’ve barely eaten anything and then I’m hungry an hour later. I cant burp at all, its really painful and uncomfortable and have to stick my fingers in my throat to tickle my tonsils to burp, very annoying.
    I now suffer from excema on my hands and feet. I was researching how to deal with this when I learned that both excema and celiac are immunity issues. I came to this blog after googling celiac and excema. After reading the posts its quite interesting to see a connection. Coupled with my life long issues with a sensitive stomach, gas, migraines, muscle, general body pain and constantly feeling like I’m working at half speed. I need to make an appointment with my doctor tomorrow and not take no for an answer. We know our bodies better than any doctor. Remember that :)
    Best wishes to everyone. xx

  349. Meg

    Hello, I’m 25 and recently decided to try living gluten free. I wa diagnosed with fibromyalgia in 2011 and shortly thereafter diagnosed with IBS. Additionally, I had been diagnosed with several food allergies– most significantly soy, tree nuts and sesame. I kept struggling through flare ups of pain, aches and fatigue. Additionally, I was dealing with frequent bouts of constipation and then painful diahhrea. I was tested for celiac’s and it came back negative. Frustrated, I started reseaching fibromyalgia alternative treatments. I read an article linking gluten intolerance with fibromyalgia and IBS so hopefully this will alieviate my aches, pains, and digestive issues!

  350. Carrie

    I can sympathize in so many ways. I have spent most of life since puberty either nauseous, depressed, fatigued, and in severe pain. The past 3 years I have battled severe colitis, had 4 colonoscopies, been referred to a shrink, put on every anti-depressant on the market, diagnosed with IBS, seen 3 GI doctor’s, and had every part of my body tested for severe ailment you could imagine. With my last bout of colitis and pain, I decided to try gluten free since my mother has had severe stomach issues and my Grandmother actually had her colon removed. All this and four weeks later of a gluten free diet and I feel like a million bucks. I just spent 2 months of summer vacation on the couch in severe pain and to the ER twice for dehydration treated with a morphine that didn’t touch the pain. Three days ago, bam, no pain, more energy, and I feel like a new person. I always smirked at the non-gluten people and thought how dumb the whole ‘fad’ was. I was checked for celiac and the test was negative, so I am now in the category of gluten sensitivity sufferer’s or what my current GI doctor calls ‘functional’ stomach issues with a depression diagnosis. I have now cured myself and wish I had tried this sooner. I will not ever be told that it is ‘all in my head’ again. I have my
    LIFE back!

  351. Linda

    are the blood test always accurate? My son has celiac, needs to gain weight — how do I help him — drs seem useless. Linda

  352. Donna

    1 year ago, during a work session at the gym, my heart started racing and beating irregularly. That same evening, I checked myself into the ER and later was diagnosed with having Atrial fibrillation, a condition in which the heart beats fast and irregularly. After about 4 hours at the ER, my heart returned to normal rhythm. Weeks passed and after numerous testing, they could not find anything wrong with my heart but they were not able to explain my AFIB episodes every few days since my first eposide. Each AFIB espisode could last between 4 hours to 24 hours and I leaves me tired and out of breath. They prescribed pill to control the rhythm and blood thinner to lower my chances of having a stroke while in AFIB. I took the blood thinner but refused to take any other drugs due to possible nasty side affects. I went to a few doctors who basically told me they don’t know what is wrong with me and told me to just take the pills. Fraustrated, I began to research online about this condition and after months of research and trial and error, I began to see it was related to the food I was eating. After several months of testing various food groups that might trigger my AFIB, I tried eliminating gluten from my diet and see if that works. Sure enough, as soon as I got rid gluten, my AFIB went away. After a few trial with gluten, I was 100% sure it was gluten that was triggering my AFIB. My last episode was 3 months ago. Finally I have my life back but I sure miss my pizzas and pastas. I guess I am fortunate that it only took me 9 months to figure out that I am gluten sensitive instead of years.

  353. Amanda

    I got a crash course in going gluten free! I found out a month ago that i have celiacs disease. Its been a bit challenging to convert over to the GFD but i’ve got it way easier than some. See i’ve always been a SUPER health nut. Big into the outside of the grocery store, ate very little processed foods except the occasional crackers with lox. But i can imagine for someone that loved processed foods out of a box this would be a HUGE adjustment for them. Not mad just upset that i’m subject to all these other autoimmune disorders, such as thyroid, rheumatoid arthritis, osteoporosis (which i got at 26) etc. Its also super inconvenient when going out to eat. But what can ya do but start this new journey. So this is my story: I got a very bad case of walking phenomena about 9 years (lost like 20lbs, weighed 99lbs dripping wet) ago and that is when i was told i was lactose intolerant after going back to eating food again from being so sick. Ever sense then i haven’t been the same. Most of my life i was fine with everything, regarding food. Then its like one day there was a switch. So for the past 9 years i’ve been eating a dairy free diet. Then last September i moved in with some new people and i started to eat more bread as it was in the house (toast was my new best friends, breakfast on the go). I’ve always sort of stayed away from carbs such as pasta, bread, processed foods and beer because i’d feel super bloated after eating them, but i was eating 12 grain bread thinking it was good for me. I was wrong! Then this past January i started getting the big “D” after every meal i ate (Its like it would all go through me and i started loosing a few pounds). Ok i have a parasite or something no big deal. THINKING, PRAYNG it would go away! Well after 7 months of it, i thought, i really need to go see a doctor. Long behold, i test SUPER positive for celiacs disease, like off the chart of HIGH numbers. So i don’t know what the answer is, not sure there is one but i blame the 2 slices of whole grain/12 grain bread i was eating for breakfast everyday sense October of 2011 for tripping this girls intestines to turn against her! Its like why now? Have i had this my whole life, or just now did they start turning on me and showing symptoms?

    So here i am one month into this GFD and i’m being really strict about it. Nothing, i feel the same i have all the symptoms still, leaky gut, the big “D” but minus one awesome thing. My stomach still churns, grumbles, gurgles etc but the chronic pain is lessening. So i might have let my “D” go on for too long and extremely damage my intestines. Its amazing what damage it does. But i’m praying that this lessening of pain will only get better, and eventually my “D” will go away as well as a leaky gut! So i feel for everyone that has symptoms like mine or way worse than mine. So with that i will PRAY/WISH that they come up with some pill that will help us process gluten better or at least not make our body attack it, or lessen our symptoms. Something, anything would help! Well one can dream!

    1. Ren Rapp

      Hi Amanda, I too feel I let symptoms go for too long before realizing it was gluten. I found out I had dairy-intolerance after doing weight Watchers where I was eating three dairy servings a day…and my nails were so soft and breaking off and I had diarrhea and my stomach hurt. I and heartburn too. But it was not all that clear that I should entirely cut it out because I could eat some some days but not other days. So as time went on I discovered I could not eat any, but I kept thinking I must have got some hidden dairy. I went to a couple DRs but they were no help. I quit exercising because of D. I never thought I had a gluten problem because I was eating it all the time, every day. Not until 6 months ago (eleven years after doing Weight Watchers) did I realize I had not had ANY dairy so it MUST be gluten. Argh. So now I am trying to quit the heartburn drugs since I read they keep you from digesting and absorbing nutrients! Then why do doctors keep giving them out?! I keep getting glutened, and have found I cannot eat out AT ALL. The good thing is my tummy is now much smaller, not bloated. And I’ve lost 17 pounds, and need to buy new clothes soon. Glad to have no bloating, no out-of-shape-tummy, no D!, no less heartburn since I eat only veggies and fruit and green smoothies…with digestion enzymes. ok..now getting of sofa! Thanks for blogging!

    2. jody

      Amanda,
      I have been eating kimchi every day for the last year and it has done wonder to restore my intestinal tract. Cabbage is very healing, especially when it’s raw. And, if it’s fermented, you are also getting a healthy dose of probiotics. I highly recommend trying it. I also think Aloe Vera juice would be helpful and soothing to your digestive tract. Good luck!

  354. brandi

    C up with a good place to start my story seems difficult. I could start with the fact that when I was two I was so irritated I would pull my hair out by the handfuls with no clear reason, or maybe that when I was young I was extremely plae and had dark circles under my eyes my whole childhood. Maybe a good place to start would be my sister’s diagnosis of colic or when I started getting sores in my mouth from eating any produce at all. All of these seem like they could contribute, but my list of odd symptoms is hard to determine where and what started as symptoms ofac. Iveloped breasts very early, at around 8 and started to get chunky. When I began menstruating at 10 though I thinned right down. I suffereg throu omingMy difficulties regulating temerature and I had a lot of issues with low blood sugars. When I was pregnant with my first son I was pretty tiny, but in the 6th month I went from a size 5 to a size 22 in one week. If that wasn’t a sure sign f a serious diseae I don’t know what is. body My son pa in 30 days old after havinhaving preeclampsia and abnormal biophysical files. He had strokes while was carrying him. And still doctors asked me if I did drugs or drank despite the fact I was very involved in prenatal care and expressed cconcern . As we carried on with care I was given a diagnosis of protein s deficiency syndrome, PCOS (for abnormal mens trual periods), I could lose weightinsane calorie deficits of 1200 a day. I was depleted and then would get pregnant and gain it all back and fast. The water weight gain would start even before I knew I was pregnant. Doctors accused me of being a drug seeker for weightloss drugs, which I kind of laugh at because I don’t UAE drugs for pain because I do not want extra chemicals in ny body! Anyway, I finally decided to go vegan and I felt great… For one month and then I felt worse than before. My doctor found me to be defficient in iron, vitamin b and vitamin d and suggested a primal diet instead. Then I started that and requested a referral to an allergist. Iwent I. With my kids and he said he could tell by my appearance that I has allergies and the kids DoD too. Anyway I was tested and I am allergic to a long list in lusing gluten and pretty much all grains. Furthermore, the kids are too. My daughter had severe eczema, her doctor said she probably had a food allergy and gave me crea … End of story. Gluten gone, eczema gone. My son seemed hyperactive and whiny.… Really more clingy than most kids since birth. Gluten gone, problemsolved. My other son coulsnt master pooping on toilet and gluten gone fixed. One trip to grandmas and encountering pooping issues again! Gluten gone for good! My two youngest children have had issues gaining weight and were almost “colicky” babies. Gluten gone, growing normally. I am now pregnant (ihad three misscarriages before going GF that weren’t explained). This GF pregnancy has no swelling! My doctor says that I will probably bnot have preeclampsia because the gluten caused it. Wish they told me that before. Apparently because most patients don’t take that well, they just treat the symptoms! Anyway, I feel great. In 3 months off of gluten I lost 80 lbs without effort! My kids are healthy. If I could get my husbands family away from gluten I would be super happy. I have read about links to psychological disorders, colon cancers epilepsy, and many other health con erns that they have and yet they won’t consoder it. Check out Gut and Psychology. Wish my mom breastfed me. Maybe I wouldn’t have so many allergies now!with t. ru AiI could

  355. marybeth

    Thank you so much for your website. Last February I went on a drastic diet to loose weight, cutting our all carbohydrates and dairy. Not only did I loose the weight — I felt and looked so much better. No more swollen eyes, bloated belly and achieness, and I so much more energetic; I felt like “Me” again. I have only begun eating gluten again the past few weeks and —- here we go again. Painful “bubbles” in my belly and all of the rest of it. As an avid “foodie” who loves to make food from scratch, your site has been such a blessing to me. I just made the pasta dough today and we’re having linguini for dinner tonight! Wish I could show you the pictures. I’m actually crying as I consider how I’ll be able to make foods that meet my high standards of taste and creativity using local raw/scratch products.

  356. Figuring it out Girl

    I must say thank you for everyone’s posts. I am two days in on a gluten free diet. What prompted me? I am newly 302 lbs. I believe I have gained 15 in the last month. Although I am only 8lbs more than I was a year ago. But I feel like I have gained 30 to 40 lbs in the last two months. My abdomen has felt so big and distended that my scars from last years gall bladder removal hurt. I feel swollen all over, my family doc says I am fine my thyroid is fine, I need to reduce my calories and exercise. Duhh I should have tried that :-). I stumbled on obesity and gluten sensitivity while trying to solve my own problems. So I figured … Why not try Gluten Free, what have I got to lose? (tongue in cheek). I am planning on giving some regular updates to keep others who may benefit informed. As of today, I feel less bloated and my stomach and incisions do not hurt. A benefit already.

  357. Amanda

    I have not been teated yet. My mother has recentlt been diagnosed with Celiac tjough . I have for many years had symptoms of what i called IBS. I often feel sick to my stomach, gas, sometimea diarrhea, sometimes constipation,headache,e just recently have been diagnosed with a vitamin D deficiency, i have anxiety, oalpitations and fast heart rate, i have been in the last few weeks been loosing hair by the handful :( , severe fatigue,trouble.sleeping, reflux.……i.feel like i am leaving.things out but this is a start. After reading about Celiac i guess i need to.get t tested

  358. Jennings

    I so appreciate this blog! I found out today that my blood test was positive for CD. I am scheduled to have a biopsy on the 27th, and am, of course, still hoping it’ll come out negative, but figure I better do the research now in case. I went to the GI, with both my kids, because we were all diagnosed with iron deficiency anemia, for no clear reason. We don’t have an iron poor diet, so when my daughter was the last to get the low ferritin number, we went to the GI. Fortunately, they tested negative for CD, but mine is positive, so I guess that’s how I’d want it to be if somebody has to have it!

    The anemia, migraines and bloating are probably my only symptoms. I had been diagnosed years ago with IBS and had a terrible time with it in my teens, and then in my early thirties (I’m 47) but that’s been ok. We tried a month gluten free last year, and my guys hated it, but I thought it was fine. I’m not a bread eater anyway, and rice pasta is good. But I wasn’t super strict — we were thinking more gluten allergy than CD. And I didn’t know until today that Advil liqui gels and Advil Migraine have gluten in them and that’s BAD for me. Probably Advil, beer (I don’t drink a lot, but I have a beer about 3–4 days a week and enjoy it while cooking) and pizza will be the worst for me. Fortunately we have a lot of restaurants around with gluten free menus, and I just saw that Mellow Mushroom (pizza) has GF pizza, so I guess it’ll be ok. Kind of a shock, though, and discouraging… But things could be worse!

  359. Dee

    Wow, very interesting info!! I’ve been recently diagnosed with CD & lactose and I am confident that I have had CD for years and not diagnosed! Since early childhood I’ve had major problems with constipation, bloating, and severe gas issues. I’ve been overweight since about 10 years old, now 47, and always found it very difficult to lose weight. I’ve tried every diet under the sun!! Was diagnosed in early 20s with hypothyroidism. Also, I have problems with thinning hair. I joined a weight loss group about 6 years ago and the group stressed the importance of “wheat” in your diet!! Well, my constipation, bloating and gas issues were getting more severe daily. About 8 months ago, it was interfering with my work and daily activities. I would get severe (unbearable) pain in my tummy, then associated with BMs and finally (terrible) diarrhea. I stressed to my doctor the craziness of this and was sent for lactose testing. It still didn’t improve so I was then tested for h-pylori and was positive also-did the triple therapy treatment. My doctor didn’t mention CD so I asked if I could be tested and was sent for bloodwork. Unfortunately, it was positive also. I am learning new things daily but finding it difficult to get all of the nutrients necessary for a healthy life. I mostly stay at home and cook my own meals. Restaurants are a pain!! Most don’t really understand the seriousness of CD. I have loss over 20 lbs. in 2 months and doing well. I get the occasional flare-up and try to trace what may have caused it. I will not go of track because my pain, bloating, and gas was very severe and I want to stay healthy. I get most of my info from the web because there seems to be a lack of knowledge in the “real world”. Thanks for the info available here! Wishing all a healthy life!!

  360. Katrina

    I was diagnosed with gluten intolerance 5 weeks ago. By the time I finally went to the doctor, I had constant “D” to the point I couldn’t leave the house. It began very gradually about 10 months ago. My doctor ran all the tests, but the key evidence was my very meticulous food journal that I keep. Because I was so sick, dehydrated, and not absorbing any vitamins he suggested I immediately start a potatoes, bananas, and rice diet to stop the digestion issues and just use the blood test for gluten sensitivity. He was worried that I would be in the hospital for IV fluids if we waited 3 weeks for the invasive test/biopsy for Celiac. Since the treatment for Celiac and Gluten Sensitivity is the same, he suggested I go gluten free immediately and see if I have any results. Holy cow. 6 weeks later, I’m a new person. I dropped a lot of inflammation bloat, I can live a life outside of a bathroom, the “old lady” joint pain is gone, the rash on my arm went away, and the brain fog which caused me to doze off at red-lights went away. I’ve been “gluttened” on 5 different occasions and the results were extreme. At my 4 week check up, he told me my official diagnosis was gluten sensitivity but in his opinion, I’m definitely celiac.If I wanted to get that official Celiac, I had to go back to eating gluten and I, of course, said hell no. I had a reaction to handing out Play doh to my students last week. I had no idea gluten was in Play doh! But, live and learn and thank you for being a fabulous resource to help me in my new, better way of living.

  361. Jax

    I started really suffering about five years ago, when I was hospitalized because the stomach pain was so bad I could barely stand. The doctor, having no idea what the problem was, called it “like e-coli” and said it’d get better. The pain eased up a bit, but I was still suffering after every meal. I continued to suffer for another year with horrible symptoms (severe stomach pain after eating, feeling sick every day, B-12 deficiency, anemia, headaches), before the doctor suggested getting tested for Crohn’s Disease because I had all of the symptoms. After enduring that testing, the doctor ruled that out, but had no other suggestions for what the problem could be. I got B-12 shots for a year to help with the nutrient deficiency, but no one had any suggestions for the actual problem. I gave up on figuring out what the problem was. I tried to cut out as much fatty food as possible (because that was the biggest culprit of the pain) but figured I’d just have to live with being uncomfortable every time I ate. Finally, about a month ago, I started feeling super sick after eating certain foods and thought maybe it was food allergies. I got tested by an allergist, and found out I have zero allergies. Back to square one again. But, the allergist said it sounded like celiac and suggested cutting out all gluten for a couple of weeks to see how I felt. I’d never even considered celiac as a possibility, but suddenly it started making sense. I looked at the symptoms and found that I had most of them (and the daily nauseau and heart burn was getting worse and worse). I’ve now been gluten free for three weeks and the change is remarkable. Suddenly, for the first time in years, I can eat and feel okay. I haven’t had nausea or heartburn in three weeks, my stomach has stopped hurting, and I feel full after every meal. I can eat so much less and feel satisfied now. It’s incredible. I’m not willing to go back to eating gluten to get the blood test. I’m just going to accept that gluten and I can no longer have a relationship and move on from there. While it’s a lot more difficult to plan meals out and shopping takes extra time for me to read all of the ingredients in everything, the sacrifice is completely worth it. I feel like a new person.

    Thanks so much for your blog! Being new to this, I appreciate the guidance so much. I can’t wait to start trying some of your recipes!

  362. Jessika

    20 years ago I had surgery for ulcers, it was REALLY bad. $250,000 hospital bill! $70,000 of it was meds. I never really fully recovered. 17 years ago I stared gaining weight for no reason, they said I had type 2 diabetes. 14 years ago I developed a a bad rash, all over pain, lethargy, it sucked! They said it was pustular psoriasis, first it would attack my skin, then my joints, then my organs, then I die. Hard news to take at 33. All the while trying to deal with the diabetes with diet, whole grains, low fat, no flavor. 6 years ago, COPD! But on the bright side I got to see a different dermatologist! No psoriasis! Now it’s just dry skin. Ok, painfull, burning rash and hives cause I’m dry? 15 months ago, Lupus with . Quit smoking, COPD gone? New doctor! Arthritis and Fibromyalgia. This one is willing to listen to me. We discus gluten free diet, totally new concept for me. Years of pain, my skin, joints, muscles, stomach, intestines (gas and cramping so bad I could barely move some days), for DECADES !!!! No gluten, no corn, dairy or soy. WOW. I feel 10 years younger. I still have the gas and the bleeding butt not as bad ( pun intended), still have arthritic, still foggy but not nearly as bad! I feel alive again. Unless I fall off the gluten free wagon, hives, cramping, gas, fog, lethargy. I’m learning my lesson and I’m working on converting my daughters who both have “wheat belly’s” .

  363. Rachel Askett

    Thank you for writing this post. I was just recently diagnosed with a gluten insensitivity by a naturopath doctor, and I feel so much better! The only problem is I used whole wheat to stabilize my sugars because I have very low sugar levels and fruit would send them skyrocketing and then I would crash. Do gluten-free products stabilize sugars the same way? Any other suggestions?

    1. Alanna Risse

      I had gestational diabetes and went on a strict, no grain diet to stabilize my glucose levels because breads and pastas were spiking my glucose levels too much. You absolutely don’t need any grains at all to stabilize your glucose, it’s actually higher on the GI scale than say Beans, nuts, leafy vegetables. But that said, when it comes to grains, try and focus on whole grains like quinoa (quinoa has a fantastically low glucose index of 13), brown rice, and gluten-free oats and try to steer clear of breads. Just remember, the more food is broken down, the faster it turns to sugar and the bigger your sugar spike will be when you eat it. Read about glycemic index if you don’t know much about it. http://www.glycemicindex.com/

  364. Ren Rapp

    Having a hard time getting off the sofa today (it’s 11:30am on Sunday but been up since 5:30). Trying to figure out what my blood tests mean. It’s always good to read gluten-sensative or celiac blogs-THANK YOU for Blogging! Have not eaten gluten since about 6 months ago, but I keep getting glutened. Wish i could find a DR who knew about celiac/gluten and thyroid/pituitary. Cannot be tested for celiac since I won’t go back on gluten. In 2005, I had a Gasto DR gloatingly, happily, tell me after my endoscopy/colonoscopy, that I did NOT have celiac disease. He started me on heartburn drugs which I am off of as of 2 weeks ago. Found I cannot eat out anymore since I get tummy pains, constipation/diarrhea, bloating from seemingly non-exisitant gluten. Did a blood test for food allergies, found moderate intolerances to five things like cabbage, quinoa, string beans, and 19 things I have mild intolerances to. And these are things I would normally eat like beef, apples, bananas, jalepeno peppers, cane sugar, apricots, turkey, almonds, egg yolk, peas..butternut squash. Argh. But hey gave up milk, ice cream and bread and cakes, and pop, I can give up more..at age 60. Another blood test shows low-normal Free T3, low Free T4, low-normal TSH, normal Total T4. Well i need to go to Petsmart to get flea stuff for Cat, and T-shirt for Little doggie…then need to clean whole house since, on Wednesday hubby is having Total Hip Replacement and hospital will need to inspect house to see if he can come back here after 3-day hospital stay or go to…thinking, thinking (sometimes that’s hard… ah…another place to recoup before coming home. Well life goes on…

  365. Laura

    I’m 22 yrs old but have extremely bad migraines and anxiety. I was on meds for anxiety and it made me numb and not care about what I put into my body, so I ate what I wanted which probably did not help. I could not take the meds anymore and since I’ve been eating “clean” and exercising, my anxiety has gone down tremendously. I always had stomach issues, sometimes I go can’t finish a meal without having to run to the bathroom. But that was before I changed my diet. I was never diagnosed with anything like celiac, which I probably have not sure. But I know my stomach is extremely sensitive. I have cut out bread or anything gluten all together. I had energy again and my stomach was able to handle my meals. I am also lactose intolerant so I have to be careful when it comes to dairy. There is on occasion where my stomach does not react well with something but its less frequent as compared to what it used to be. But ever since I went gluten free, things have been great. I probably still should see a gastro just to get everything checked out.

  366. sharon

    i was diagnosed with spastic colon(what is now called IBS) when i was 18 years old. diagnosed with acid reflux disease with erosive esophogitis at age 35. i have sufferred with chest pains so bad i have sought emergency help only to be told it was related to GERD.after eating meals i often have to excuse myself to be able to remove my pants as i would bloat to the point i could not keep my clothes on.i have vomited at least 3 times a week for about 10 years.my stomach has hurt so badly at times i have curled up in bed and wished for death. i am now 51 and have just learned to live with my symptoms for all these years.…..fast forward to my daughter. she was diagnosed with juvenile rheumatory arthritis in 5th grade. tested for thyroid issue in 7th grade due to weight gain and hair loss,she missed a day a week of junior high and high school due to just not feeling well.she has battled severe weight issues for years. she is now 20 and a junior in college.in may she came home from school sick. 4 days home we made our first trip to the emergnecy room where she was diagnosed with a kidney stone. she followed up with the urologist 3 times only to be told the stone had passed and they could not explain why she was still in such pain. 2nd trip to the ER she was referred to an gyn to be checked for endometriosis. gyn doc suspected GI issues. went back to primary care doc to get referral to GI. while waiting for appt with GI she made 3rd and 4th trips to the ER.by the 4th trip to the ER she was on pain meds, meds for colon spasms, med for constipation(no BM for 2 weeks)anti-anxiety med(yep, she was at that point).….1 trip back to the primary care doc to keep him abreast of her situation.…PCP tested for celiac.…results of blood work were negative but he and i agreed it’s time to try gluten free diet. …i had been told i should try it for about 3 years but i never got motivated. seeing my child that sick motivated me.….she and i are both gluten free.…..i haven’t vomited in 3 months. i haven’t had a headache (suprise benefit for me) in weeks. i am not bloated and miserable…best news of all is my daughter is back at college.we bought her a new fridge for her dorm room with a larger freezer compartment for her bread and tortillas. we had to borrow an SUV to transport her huge rubbermaid container of GF foods. she is having to research and plan what she can eat in the campus cafe…but she feels great and this is one happy mom!!

  367. Alanna Risse

    Hi, I recently self diagnosed myself with probably having celiac disease after pretty much 42 years of suffering. I’ve always had issues. They got worse in junior high when I was sick with diarhea pretty much every morning and was missing tons of school. The doctor said I had “a nervous stomach” and I had a calcium and vitamin c deficiency. He prescribed me vitamins and advised me to take Maalox three times a day. I never got better, and I believed I was the one making myself sick by being “stressed.” In my early 20s I tried again. Lots of blood tests later, I was told I was anemic and hypoglycemic. All the times I’ve had to go to the doctor for pleurisy or mouth ulcers that wouldn’t heal, I was never offered an answer other than “stress.” In my late 20s I was pooping blood so I saw a couple of general practicioners and a gastroenterologist. She did a colonoscopy and found internal hemorrhoids and polyps. She told me I had IBS and prescribed Zelnorm (horrible drug) which was soon pulled off the market from very bad side effects. The GPs just kept telling me to drink more water and eat more fiber. I had difficulty trying to get pregnant, and my doctor discovered I had hypothyroidism. I just recently put two and tow together after a really frustrating, achy, and exhausting year. I’ve been gluten free for three weeks now and the difference is amazing. I am so excited to see more positive changes in the next few months. Thanks for your delicious recipes.

  368. M. Sien

    Yesterday it was brought to my attention by a woman that waxes and threads my eyebrows that I could possibly have a gluten intolerance. What prompted her to suspect this is acne on my forehead and the skin lining my jaw. She said it appeared rash like in appearance, and at age 24 I shouldn’t be dealing with acne. Unfortnately I’m one of those people that never thinks something would happen to her, but lately I’ve learned that I need to quit hiding under that wishful philosophy and open my eyes. I’m recently married and have been trying with no luck to get pregnant for the last 4 months. My periods suddenly became irregular starting 8 months ago, which was the same time I noticed the onset of acne. I assumed it was hormonal and tried to lessen the stress in my life, but nothing seemed to help. In addition to all these symptoms I was noticing that I was having more frequent loose bowels. I’m one that has never had problems with my bowels and unless I was sick never had loose bowels. Yesterday I researched what to eat to rid your diet of gluten and then I went to the store and shopped accordingly. I’m currently keeping a food/bathroom diary to track any changes. So far the only food that has caused me to have pain in my stomach and a loose bowel movement was a Gluten Free granola bar. I’m assuming that it still had traces of gluten in it; I read that some gluten free products still do and you have to be careful. This website has been even more helpful in validating what I am probably experiencing. I’m wondering if anyone knows anything about gluten free make up?

  369. Shauntel

    At 2 years old my son started getting sick a lot. He was in and out of the hospital for pneumonia. Diagnoised with mild sleep apneia, reactive airway disease. He complained of many things from 3 to 4 years old. Headaches, belly pain, leg pain, and tired all the time. At At 4 he had emergency appendix removal. Then 3 more bouts of pneumonia and he was just sick and tired all the time. Sent to pediactric lung speacialist. She started testing him for allegies and some other things. She found he was allergic to(by very high numbers)wheat, barley,oats,rye,soy,and peanuts. Dr. said to remove gluten from his diet so we did. He started feeling better in a week of having no gluten. Well, we cheated and let him have some regular pizza from the pizza place and he was sick within an hour of eating it. He started coughing, trouble breathing, belly pain to the point of him crying, and two days later he was severely sick and went to Dr.‘s. Once again he had pneumonia. There is no more cheating. He at 5 now won’t even take anything with gluten in it because he says he knows that is what makes him sick. All I can say is he is a much happier,healthier kid now.

  370. H2ogurl

    Wow…a life of pain and no answers. I remember being in high school and growing up in the “meat and potatoes” way of life and I could never get enough vegetables and rice. I asked my mom way back then if I could just eat those things and she quickly replied, “you will eat what all of us eat”. She did not know, nor did I what my body was just starting to demand. By the time I graduated I was having stomach pains and bloating along with a “lazy system” that would wait a week or longer to empty. My joints ached, I was in pain and no one understood what was going on. Time marched on as it does. I spent over twenty years in and out of emergency rooms, doctor visits, medical test after test, even exploratory surgery. The doctors treated me like a hypochondriac. In 2004 I ran across an article in a alternative health magazine that talked about Celiac. I remember calling my mother that same day and telling her I found out what was wrong with her!!! She had all the symptoms!! I had not even realized I was in the same boat. Also I had started working with a young woman who had Celiac…she told me, I said something at the time but still did not put two and two together. We worked together about six months when I had really taken notice of how she ate and now careful she was as well as how sick she was if she got a cross contamination in something she ate. I started asking questions about symptoms and a light started to flicker…I set up another appointment with my doctor, had the tests ordered and guess what? Yep!!! My children both show signs. For my poor sons hands, the skin can come off in layers! And my daughter can be bent over in pain and then in bed for days. The answers are here and we can choose to suffer no longer.

  371. Konni

    I just read your story, and what you went through matches exactly what I have been going through. I was at the point, this summer, that I just wanted to give up. All I did was watch TV, lay on the couch in my pajamas all day. I have not been diagnosed with Celiac, but I have all the symptoms, and I went gluten free, dairy free, and grain free over two weeks ago. By day six my “brain fog” was gone, by day seven I had so much energy I over did it at they gym. My depression is gone, anxiety at a minimum, sleep is starting to improve. At 14 days the psoriatic arthritis pain in my left foot is gone for the first time in three years.

  372. Jess

    I’m 34, mother of one child and have no clue what is wrong with me. It is looking like some sort of food allergy though and I’m planning to try going gluten free to see what happens. Thank you for the in depth look at your experiences! The first changes in my body came late in my 20’s when apples and almonds started making my throat itch just slightly. I’ve since cut out a few more fruits too. Over the past year, I have begun to have sporadic facial swelling with no apparent source or reason. Every time I think I figure out what is causing it, I end up wrong. As a small child I was lactose intolerant and have recently been reading about adult milk/dairy allergies being possible. The facial swelling is usually in an area near my lips or eyes and the size will be only one or two inches in diameter. One day it moved from eye to one side of bottom lip and then to the other side of top lip where it settled and stayed for hours thanks to slow working benadryl. It seems to respond to antihistamines but the Zyrtec kind will knock it out in a matter of minutes up to an hour when the Benadryl kind will take several hours and up to overnight to make it go down. Massaging the areas seems to help it not get a bad and if I feel it coming on and use massage and heat, sometimes it will not ever actually settle into a full on swelling episode. Sometimes the insides of my wrists will itch badly and a couple times there were areas of swelling about a centimeter in diameter in the very center on the inside of my wrist. There are times when I have tingly fingers too. I have not been able to lose weight since my mid 20’s. When I had my son I was healthy and didn’t gain much weight at all and stayed around 150 (I was 20) and then slowly gained weight from them until about 25 years old when I gained about 50 — 60 pounds over about 2 years. When I hit 200 lbs I was defeated and depressed. By 2 to 3 more years I was almost up to 230 and over all the years since then I have gone up and down between 180 and 230 usually staying between 200 — 230. The only time I lost significant weight was when I was in a bad relationship and didn’t eat very often. During that time I ate a very limited diet and did not eat much that wasn’t fruit, veggie, chicken or fish. As soon as I got out and went back to regular life, the weight began coming back. I added back in all of the foods that my ex had cut out of our diet. Had the relationship not been so controlling and abusive, I would be much healthier for the good food choices, now if I can just go back to eating like that in my happy healthy life.….. Not sure what help my comment may be to anyone but you never know.

    1. Sue

      I have been dealing with severe episodes of hives since November 2006. They are a pressure type uticaria, and extremely painful and itchy at the same time. My doctor finally diagnosed me as having too much histamine in my body, says I may never know why, and put me on an allergy “cocktail” of an antihistamine/pepcid combo, which does keep them in check. I read somewhere that this could be caused by too much gluten, but no one has ever confirmed that, and I wonder if anyone has more knowledge of that here? I have cut out some gluten, but definitely do not have any knowledge of how much it affects me, i.e., haven’t or don’t know where to start to find out what foods affect me. I’m getting ready to go to a nutritionist. Any ideas?

  373. Angela

    I’m new to the Gluten Free world…here’s my story.
    I went through a very stressful divorce back in 2009. I had an 8 month old and a 2 1/2 year old at that time. My now ex husband was very controlling and verbally/mentally abusive, amongst other things. In the process of leaving him, I lost 25 pounds, and had a lot of stomach problems (vomiting and diarrhea). I also started getting canker sores in my mouth. I attributed this all to stress. For the next 3 years, I suffered with at least 3 canker sores A MONTH. So basically, I never had a reprieve from them. It was horrible and depressing. Eating was a challange, and the pain was awful. I went to my doctor for labwork– found nothing. I talked to my dentist– he didn’t really have any suggestions except quit eating citrus and tomatoes. I tried everything. Finally, after 3 years, I turned to the internet and my good friend “Google”. Much to my surprise…I found that many people with a Gluten intolerance have recurrent canker sores as their main symptom. So I cut out Gluten…and I went canker sore free for 2 months!!! I then went to a fondue party, and ate sourdough bread (yum), and sure enough, 2 canker sores popped up 3 days later. That was enough to make me a believer! So here I am, embarking on the challenge of trying to find GF recipes. It is challanging, when my favorite foods have always been bread and pasta. But I love to cook and try new things…and more importantly…I love living canker sore free!!!!!!!!!

  374. Kara

    10 years ago when I was in high school, I developed painful and itchy rashes on the outsides of my elbows and on my stomach near my belly button. They itched and ached. They were weepy and embarrassing . I felt like a leper. My single mother and I were uninsured and she could only afford to take me to a public health clinic in our small town where I was diagnosed with contact dermatitis. Pretty generic diagnosis. The rashes continued on and off into my early 20’s.
    A few years ago i started having intense stomach pains (as in curled in the fetal position) after certain meals. I have horrible flatulence. I belch incessantly. I alternate between feeling full upto my neck with a distended abdomen or feeling like I have an ulcer. It feels like a gnawing pain the size of a quarter in my upper abdomen. I haven’t had a period in 4 years. I was recently put on birth control pills to provide my body with estrogen as a recent blood test revealed that I have less estrogen in my body than an 85 year old woman. I was diagnosed hypothyroid (with an ever increasing dose of thyroid medication). I have brain fog. I am forgetful. I feel dumb. I’m always tired. I have no libido. I’m depressed.
    I was given a food allergy blood panel in which I tested positive for egg white allergy but negative for gluten. I cut eggs out about a year ago and have noticed no difference.
    I’ve suspected that i have a gluten issue for awhile now so a few months ago I decided to cut it out cold turkey. I was surprised by what happened next. About 5 days in I got SICK. I felt shaky and panicky. My face, legs and hands were so swollen I had to call in sick for work. I had unbelievable bloat and water retention. I felt like my head was swimming. It literally felt full of water. I was so dizzy I thought I’d pass out. I craved bread so badly that I broke down, ran to the market bought a bagel and chowed down on the curb outside. I’ve never eaten anything so fast in my life. Within an hour I felt better. The bloat subsided. My head felt better.
    This experience leads me to believe that I really need to give it up. That my body may actually be ADDICTED. I think i had gluten withdrawal. Does that even exsist?? My question for this forum is have any of you that have given up gluten experienced withdrawal symptoms? If so, What were they? How long did they last?
    I’m getting ready to stop eating gluten again and I realize that every individual is different but I’d like to go into this next foray with a bit more awareness about what I might be facing.
    Thanks.

  375. Katelynn

    I officially realized something was wrong about a year ago but wasn’t sure what. Before then, for years, and being twenty-one this has been most of my life, I was constantly sick, ear infections were every couple of months, I was always tired, head aches didn’t go away, I felt anxious, I was overweight despite the amount of exercise, and I didn’t process information as quickly as I should have. I thought I was just depressed and stupid. One year ago I began having digestive problems. I was either constipated or have diarrhea. I knew it had to be an allergy and afraid of what it might be to — gluten being my worst fear — I kept eating my normal food. A few months later it reached a point where I’d had enough, so I took out dairy in my diet. That helped my stomach slightly but the issues remained. A few months later I loved in with a family and their toddler (now a preschooler! big girl) has celiacs and allergic to dairy. Her mom insisted I should try going off gluten to see if that’s the other solution. I was afraid to try and continued with my ways. A couple of months later I began flirting with going off of gluten, you know, the occasional slip ups would happen for a delicious gluten filled treat. And then it happened. My stomach was in writhing pain for three days. It felt like someone was mixing my insides with a knife. Needless to say I am officially off gluten and dairy and my body is so thankful. All of the symptoms are gone. Everybody thought I simply had a low immune system and they were spot on. What we all didn’t know was the deeper reason as to why. Who knew this could be going on for years and I had no idea? Thank you for your effort delivering scrumptious recipes to fill my gluten and dairy free tummy!

  376. Crystal

    Well how do u help when a loved one is finally told she has celiac but damaged has been done ! Blood clots pain all the time memory issue lost 159 lbs no help from doctors they say eat fruit eat vegetables any thing gluten free but even a egg that’s all organic cage free causes pain nothing helps one thing issuer and that’s pain !! My mother has been these way for almost three years ??? What to do !

  377. Sandra

    Hi,

    I think I may be gluten-intolerant. I did a 3 week cleanse and took myself off gluten and I felt great. No back pain (which I usually have on a regular basis) and overall good feeling. Then I added certain foods back in (some of which contained gluten and dairy) and since then I have been experiencing lower back pain and stomach pain every night. I have this pain in my stomach every time I eat. I am not sure if it is related to gluten or dairy but am thinking both may not agree with me. Thanks for sharing.

  378. Vanessa Gonzalez

    I was officially diagnosed with Celiac this last Tuesday. About a year and a half ago, I was also diagnosed with Hashimoto’s disease. Hashimoto’s is an autoimmune thyroid disease that causes the immune system to attack the thyroid and this causes you to fluctuate between hypo– and hyperthyroidism, along with all of its related systems. The Anti-TPO number is the number that indicates how terrible you feel. I started with over 2500, now I’m down to about 1200; in a normal person, this number is below 60.

    So after all this time of taking thyroid meds and blaming any of my health issues on Hashi’s, I overlooked the possibility of Celiac. No one in my family has Celiac. The truth is, which I’m almost ashamed to say now, is that I regularly made fun of the gluten-free “craze” and saw it as yet another diet fad propagated by celebrities and food producers. My doctor didn’t and would regularly suggest I cut out gluten. This may alleviate my symptoms. But I didn’t. I was in denial. It didn’t help that I am married to a fine dining chef who regularly complains of diners with their special dietary requests.

    After several instances of getting incredibly sick from eating gluten-rich foods, I finally accept that I have Celiac and for me to feel well again, I have to eliminate gluten from my diet. I loved reading the blog about missing oatmeal. I love oatmeal. I want to eat oatmeal more than anything else that I have to cut out of my diet. But it feels like mourning in a sense, having to let go of foods that I loved. And now that I know I can no longer eat them, I want them more than I ever have before.

    Thank you for creating this website and sharing your experience with Celiac and going gluten-free. It makes me feel a world better knowing that others experience these feelings about the diagnosis and lifestyle changes.

  379. Erin

    I am still trying to figure out why exactly my intestines hate me. I am looking for others to see if they have had similar experiences…
    I was diagnosed with Sjogrens Syndrome (an auto immune disease) a year ago. My stomach has always been sensitive though. I have had a colonoscopy and the results were fine. Although in my blood work, it came up positive. That’s why I had the colonoscopy. Here is my question: some days I seem to be ok if I eat something, but the next day I may be miserable! With gluten sensitivity or celiac-do you always feel miserable by eating gluten? I try to limit my gluten intake-it seems like if I over do it, say on pizza, I just end up miserable. Yet, I can eat a few cookies and be fine! Any help?

    1. Angie Reed

      The same thing happens to me!! I had 1 piece of pizza and I felt horrible!! But at work I ate 1 peanut butter cookie and was fine. Lately my stomach feels like my food wont digest!! I will have a stomach ache for about 3 hrs after eating.I guess I better go get that blood test people are talking about.

    2. Suzanne

      For me, I found it got worse with time, so I would stop now as ingesting gluten if you are intolerant tends to worsen the condition. Please do yourself a favor and stop eating gluten now. I used to be able to handle a little like you so I pushed it for years. Now if I get a crumb on cross-contamination, I am bloated and in pain for days. Please be careful.

  380. Kim

    about 3 years ago was diagnosed with Plantar Facitus and given orthotics to better support my feet. I thought it strange that I had it in both feet. Most people find relief in a few months but after 3 years I was in worse pain that spread to my ankles, knees, hips and hands. I was in severe pain all the time and felt very alone. My feet also felt like there was a vibration running through them. I adjusted my diet and added anti inflamatory foods and supplements but I never stopped eating my homemade breads, bagels and pastas. My lifestyle was becomming terribly restricted.

    I read an article linking gluten to arthitus symptoms and recognised some of my own symptoms. I eliminated gluten and within 2 days I felt relief. I am myself again and now am changing my favorite recipes into gluten free recipes. I am so grateful for your website. It is a bright light on this road.

  381. Angie Reed

    I have been having horrible stomach aches and constipation after I eat. It almsot feels like my food is not digesting. As I think back I was always having stomach aches growing up. I also had bad acne and skin rashes. I had my gall bladder out when I was 6 months pregnant. 4 yrs ago I was having fatigue and I was sent to a rheumotologist. He said I was vitamin D defecient.Wel1 4 yrs later I am now experiencing face and neck rashes after eating, muscle weakness and horrible stomach aches. My father in law told me to avoid gluten and see what happens. I have lost 10 lbs and feel great!! recently over the holiday I have slipped and have had things with gluten…I feel like crud! what do I need to ask the doctor to do if I suspect I have Celiac disease? Thank you

    1. Suzanne

      I just want to say that I tested negative for Celiac with a blood test, but I had the same symptoms as you and know through trial and error that I am gluten intolerant. It is best to go to a natrupath if you can.

  382. Suzanne

    I just want to thank you for your post. I could cry just from being understood! I too had terrible “acne” before I figured out I was gluten-intolerant and neither my family doctor or dermatologist believed me when I said I didn’t it was acne but a rash. Sure enough, within 4 weeks of eating gluten free, my skin cleared, at 31 years of age. Unfortunately at that point, I already had scarring from years of trying to treat this rash as “acne” on my face. Nothing on the celiac sites says anything about this symptom and I felt so alone and confused. I will look into your link as well for other symptoms. I figured it out through trial and error, and a naturopath book I read. Before I went gluten-free, I had terrible back pain, stomach pain, and, yes, I also was depressed and listless all through college. I graduated with a C+ average even though I am an A student because I just couldn’t focus most of the time and felt tired an weak most days. Like you, doctor after doctor treated me for everything from depression to endometriosis but NONE of them looked to my diet to treat my symptoms. Sometimes it really frustrates me to be gluten-intolerance, but you reminded me how awful I used to feel and, my goodness, it’s so much better now!! Thanks so much for sharing!

  383. Tammy

    I have been reading a lot of peoples stories and I guess mine would be similar. I went threw life with my family saying I was just trying to get out of doing dishes after dinner cause as soon as I would eat I would get diarrhea, I have long been plagued with migraines have numbness and have lost a lot of my hair and my teeth have gone bad. I have had a lot of cancerous polyps removed, and now I understand about the brain fog, I tried to start college a few times but could not get the info to stick. I always thought it was just me or to old to go back to school,I am 43. I was diagnosed with celiac 3 years ago but I know i have messed up a few times am working on it. I know I have had this all my life, My family said why are you heavy if food goes right threw you I said don’t know just lucky. I have since had weight loss surgery a new kind so they didn’t mess with my intestines because of celiac,I have graduated from Le Cordon Bleu with almost an A average,although I still have a lot of issues with getting the stuff to stay in my head. I also just started school online for my A.S in small business management in hopes to open my own restaurant. I was just diagnosed with narcolepsy so lost both of my jobs, My question if you or anyone would know could the narcolepsy be maybe due to celiacs?? like I said I am 43 and it just all the sudden came on any feed back would be great. Thank You. P.S The funny thing is my sisters and dad would never think to make any gluten free dishes because they didn’t think it was that important well now my older sister found out she could have it to and she was very apologetic to me all the sudden she said her doc told her you could get cancer of the bowels and so on that it is a serious disease, Colon caner runs very high in my family . So now she is concerned for health since it is maybe her.

  384. Melissa

    It’s 2:45am and I can’t sleep because my hands, stomach, and even inside my nose are all swollen because I ordered fries at a restaurant that also frys breaded things. I have been following a gluten free diet for over a year due to the advice of two different acupuncturists and and an herbalist. I don’t know whether I have celiac and I won’t be finding out unless they develop some test that doesn’t require me to go back on it. I have these bouts where I even think it is all in my head. And then something like this happens. Usually I CAN eat the fries. Except tonight when I couldn’t. Another thing to add to my list. :-(

  385. Janet

    I went gluten free about 5–6 years ago after having intermittent and ever increasing GI symptoms. Doctor wanted me to take prilosec for symptoms. I thought I wanted to get to root cause so did an elimination diet. Sure enough, it was gluten causing the symptoms.
    Am very happy to have found the cause . One caution though. I was not and still don’t eat much if any red meat (don’t eat enough vegetables either). When giving up gluten, we eliminate many foods that are fotified with iron like flour and cereals. I developed iron deficiency anemia. Supplemental iron took care of it but I went through months of feeling weak and had increasing shortness of breath before it was discovered.
    Something to consider and prevent.

  386. Vicki Pickard

    I found your site today, and it gives me some hope. I have been experiencing GI symptoms since I was a kid — and in the last couple of years — started getting numbness in my feet — and sometimes my hands. As well, thinking processes were not that clear… and sleep — well, forget having any restful sleep at all really. My doc sent me to a neurologist… nothing much.… And now, my skin and muscles are so sore it takes lots of concentration to keep going. Could it be gluten ? When I suggested it to the doc, she did not seem to think it would be… however when I read other folks posts… I begin to wonder. Also, I have lost weight… and even when I eat lots of calories — don’t put any weight on. I did discover that when I stopped milk products — the sinusitis I had for 30 plus years seems to have decreased significantly. I am wondering if it could be celiac/gluten sensitivity??

    1. Laura

      This is a pain(literally) Honestly, I cant think of a time when my life was easy. Be it working two jobs as a single mother or worrying about how I can not sleep because I was having panic attacks. I attributed them mostly to working so much. I had so much energy I didnt know what to do with it! So when I got home from working two jobs, I would run on my gazelle until i got somewhat tired, only to lay down with panic attacks and anxiety. I started getting anxiety– like symptoms at work.. shaky, sweaty, couldnt focus, so a fellow worker would sit me down with a glass of OJ thinking I was diabetic. Just taking that break helped a bit. Then I hurt my back. In 2007 I hurt my back so bad that I couldnt work anymore. (To this day I am still going through the procedures which is leading to surgery but that is another story) Im telling you the day I hurt my back, my whole world crashed down on me. A couple months later I was diagnosed with Graves Disease. After the treatment and medication, I found I had IBS… I cut out all dairy and foods that aggravated me. I was still in pain. I went to my doctor a year later and he told me to cut out Gluten. It helped! I tried eating dairy again after a few weeks of no gluten, only to find out I still can not tolerate it at all. Well that was all a few years ago.. since then, Ive cheated. ALOT. Its only hurting me. I found it so difficult to stick to a gluten free diet. I grew up with bread on the table every meal and some sort of spaghetti or flour based dessert. It is so expensive to stick to it! I went down the road of trying to make my own bread and have run into brick walls. The loaves come out like rocks or just crumble in my hands. Its so frustrating. I can not have egg yolks, dairy(even casien) , soy, onions, peppers, anything tasty, amoung other things –the list is extensive. I do substitute almond milk which I have grown to like. I can not buy frozen gluten free, dairy free foods because they have soy or onion in them. Everything I eat must be made seperate from what I make for my child. He drinks lactaid… so two different milks are being bought for the house.. two different breads.. two different pastas. And people say “well why cant you just give him what you eat”. Easy. Its too expensive! A box of corn or rice pasta is easily $4–5. And if you ever tried it, you can agree that there isnt alot of pasta in those boxes. All purpose flours need more ingredients to make a loaf of “rock” bread or pasta. Those extra ingredients like xantham gun are ridiculous. Any one have ANY suggestions? Ive tried recipe sites, Ive tried cutting bread and pasta out completely but my body craves it. Moving to an area or an island that doesnt have bakeries on every street corner, with wafting smells of little gluten filled treasures inside was an idea. :/ But I do feel like absolute crap. I feel depressed al the time, my body aches.. I have constand abdominal and intestine pains and I know I am only hurting myself. So before I go through my cabinets and donate all the flour and dairy filled foods.. I need support and will power! This site made me realize that there ARE people outside my bubble who go through the same thing as me. Checking labels, buying safe foods, saying no to the bun. (ouch!) But im thankful I came across this site. I will try harder with my diet. :-) I wish everyone luck… because it really does hurt when you fall back onto the gluten wagon.

  387. jody

    Just recently discovered your wonderful blog and have been enjoying it a lot! I was diagnosed with Lyme Disease 6 years ago and went through a horrible time with it. Went the natural route and took tons of different vitamins, herbs, etc. The brain fog never let up. I was diagnosed with premature ovarian failure (I was 27), rheumatoid arthritis, had nerve pain and damage. Then I started doing research and learned about the symptoms of celiac disease. i thought back to the gastrointestinal issues I had had for years and the brain fog that was present before I ever got Lyme. I insisted that my naturopath test me for celiac. He was skeptical but agreed. Sure enough, that was the culprit. Within 3 months of going gluten-free all of my symptoms went away, my period resumed and my hormone levels were restored, my thyroid function was normal again and I had no joint pain. Still had occasional brain fog until I learned that I also had an allergy to eggs and an intolerance to coffee. Something to keep in mind if you go off gluten but still have a few symptoms– is there something else in your diet that your body doesn’t like?
    Also of interest is that I have spoken with at least a handful of others who had Lyme Disease that appeared to bring on the gluten allergy. Anyone have this experience? There seems to be a connection…
    Thank you, Shauna, for sharing with all of us!

  388. Meg

    I had decided to join a gym when I became an empty nester. One of the things the recommended was a food detox that I did gladly. I felt great. Then I went on the diet prepared for me. Not long after that I started having joint pain. Excessive to the point that I almost couldn’t function. I love to cook and was reading a foodies blog about a gluten sensitivity and it hit me. This is what I have. It along with the intense pain started within weeks of going off of the detox. I immediately removed gluten from my diet and went back on the food detox. With in four days I was noticing a difference. Since it has only been a week I am curious to see how I feel in six weeks. I can’t wait to be pain free. You have no idea what a prisoner it makes you. I refuse to let it take me hostage.

  389. Marie

    I am about 10 days gluten free now. I was just recently diagnosed with wear allergy. Normal levels are .35 and below mine was 9.78. Prior to 10 days ago I lived in wheat. I have hundreds of pounds of wheat, I grind my own And baked everything from scratch. Before the diagnosis, I was sick. The last month my low every turned into NO energy, I couldn’t get out of bed. I lost weight. For the last few months I was tired walking up stairs at 35 years old!! My whole life I’ve had a nose drip and sneeze. The last two weeks I just about stopped eating everything because I became afraid of food. I went from living in my kitchen to being afraid to go in it. I had enough panic attacks to last 300 hundred lifetimes! I lost lots of muscle tone. In fact then they just tested me they were for sure I was hyperthyroid again. (Levels were normal) for years I’ve had on an off leg tiggling. I guess I have some questions As to when people started going gluten free. A few days into it I started having canker sores on the sides of my tongue and I have some more today. I’m thinking maybe its just my body detoxing from all the gluten. I am starting to have more energy. Not tons. My panic attacks are less, as our my migraines. 3 weeks ago I had a migraine for 5 days!! I am starting to eat other things now and my belly is adjusting because for weeks I had basically nothing. Then the other day I gorges myself and had bad indigestion but I think that’s because I was starving. I do at time feel like my throat is tight or that something is in there (I also think a lot of that is in my head) it’s completely messed with my emotions. Is it still ok that just about at two weeks I’m still feeling these new things? Should I be more patient? The dr just called said eat gluten free and that was it. :/. I think my tongue is my biggest issue right now. Tends to get white, it’s sore and then canker sores appear. I haven’t gained any weight but I also haven’t lost any. Thanks for help or suggestions. Nice to know I’m not alone.

  390. Ash

    Ok. I don’t know if I have Celiac or Gluten Intolerance… because… DOCTORS will not test me for it. Three years ago I experienced my first symptom (to my knowledge) of my “unknown” condition during dinner. Within minutes my stomach swelled up and I looked 6+ months pregnant! My husband and I were freaked out and we called the nurses hotline and after a series of questions I was instructed to go to the emergency room right away! I waited in the emergency room for a few hours and then I was finally seen. The doctor “thumped” my stomach and said it was gas and there was nothing I could do about it. I went home and started to eat Maalox by the bottle for weeks and weeks… I would wake up every morning with a completely flat stomach and after eating my stomach would fill up with air within minutes of eating. It started out 1x a month, 5x a month, 3x a week, 7x a week, then to every single meal I ate. I just dealt with this for a year and a half before I finally made a doctors appointment because my stomach just kept growing and growing and getting hard as a rock. All the while I was passing rip roaring loud gas and my stomach would cramp and make very loud rumbling noises!

    These symptoms got so unbearable that I would cry myself to sleep and cry again when I woke up because my stomach STOPPED deflating during the night and I would wake up looking like a puffer fish bloated mess. I waited to see a doctor because I was moving back to USA and I didn’t want to stop our major move if it was something really serious or would take a long time to figure it out. I finally was seen by my primary care doctor in USA and she referred me to a Gastrointestinal doctor. I was told the wait to be a new patient is 8 months but if I saw the PA I would become a patient and then could be seen by the doctor quicker. I agreed, and when I met with the PA he instantly knew what was wrong with me. He said I had Small Intestinal Bacterial Overgrowth. After weeks of medication that DID NOT WORK I met with the doctor who said that having SIBO was impossible since my symptoms happened immediately! To have SIBO my symptoms would have to happen after 75 minutes! LONG STORY SHORT and 5+ COLON CLEANSES LATER.… I am going on three years now I have had a colonoscopy/biopsy because the doctor said I was having an immunological response to ALL FOOD. I was put on Gastrocrom which is a medicine for Mastocytosis but I was told I did not have Mastocytosis. I had to take 2 liquid viles of medication 4x a day and it was making my symptoms WORSE! I quit taking these meds after the nurse accidently told me “it should have been working by now…” but they wanted me to keep taking them! Despite the doctor saying I was not allergic to food I went and got tested for 56 foods and it all came back negative. I was told I had IBS by the GI doc and given no other medication and told “We believe you but what is happening to you is unexplainable!”

    I went to another doctor for a second opinion because my primary doc said I should.… and that was fun! The staff scheduled me even though the doctor doesn’t do second opinions. I was crying and was told that I don’t have IBS and that he didn’t understand why the previous doctor had me do all the test I had done (Lactulose Breath Test, CT Scan, Colonoscopy, Biopsy, etc…,) and that all he could offer me is reassurance! So.… here I am now. I went back to the primary care doctor to see if I had exaggerated lordosis because it was mentioned in my medical records. The doctor said we all have lordosis and it makes out butt and tummy stick out.

    Now I am wondering if I have gluten intolerance or celiac… but the doctors REFUSE to test me for it! They refuse to think its FOOD causing it. I have even tried to be a VEGAN and still had symptoms.… I have gone back to just eating normal but I do love pasta, bread (BAGELS especially.…) and beer and when I eat these things my belly just BLOWS up with air and I look like I am about to deliver a baby! I feel addicted though. YES, I am addicted to bagels. I also suffer from chronic constipation but had been on Miralax for YEARS! I also have migraine headaches, brain fog, dizziness, cramps, stomach rumbling, etc.… I have had GI problems since Kindergarden. I wasn’t able to have a bowel movement for 7 days straight and I had to have enemas. That was also unexplainable.… I have ate Wheat my entire life though… At that age I remember eating a lot of cereal and bread. In fact, I was told to eat MORE BREAD so that I could have a bowel movement.… My entire life I have been constipated. :(

    Anyways,

    I stopped taking my birth control because people complained of “extreme bloating” but having been off it for a month there is no difference in bloating/stomach distention. I tried to go wheat free but I found out wheat is in EVERYTHING!! I saw that raw chicken from the grocery store is injected with wheat! So I think that my 1st wheat free attempt was unsuccessful. I am going to attempt to try again for 2 weeks and see what happens. I used to be a very active gym go-er, runner, flat stomach, PROTEIN SHAKE drinking girl… Protein Shakes have WHEAT in them! If I woke up with a flat stomach and had a protein shake, my stomach would also go BOOM! ~3 YEARS~ of misery, stress, depression, emotional rollercoaster moods, anxiety, etc… & here I am. I kind of gave up and just kept praying and telling myself that in Gods time he would help me. I think I am going to read Wheat Belly.… avoid Gluten for 2 weeks, and just.…. keep praying and waiting. I hate looking and FEELING pregnant, and I hate when people ask me if I am.

  391. Christina

    First of all I am not a health nut by any stretch of the imagination, no meds, good health otherwise, but that being said at 46 I have been suffering increasing lower intestinal problems for the last few years, so I tried this gluten free thing for the heck of it. Within a week I felt better. It has now been 5 weeks, and I noticed that for the past week I didn’t need my reading glasses (which I only need when I am wearing my contacts & only for the past year & 1/2), & I just had my eye exam 2 days ago-no changes, after a little research it seems there can be vision improvement.…weird!

  392. Tracy Lytle

    I am so thankful I found this blog. My 3 year old son has the beginnings of celiacs disease. He was never formally diagnosed with it, but has very strong symptoms leading to it. I even have symptoms and am scheduled to get the blood work next month. I am trying to cook gluten-free and GMO free for us. I am new to this so I am glad to find people who have gone before me and have delicious looking recipes! Thank you!