spreading awareness of celiac disease


olive bread, originally uploaded by shaunaforce.

 

Hi, my name is Shauna, and I have celiac sprue.

Those of you who are regular readers of this website won’t be surprised by the statement above. In fact, you may be wondering why I am bothering to repeat it again. You want to know why?

Sometimes, I can hardly believe it myself. Even though I keep this website, and I am writing a book about my gluten-free experiences and recipes, and I educate someone about celiac nearly every day, it seems — I still have to shake my head and say it out loud.

It’s not because I miss gluten. In fact, the sight of glutened treats does absolutely nothing for me anymore. (Okay, occasionally when the Chef has bread with one of our fabulous midnight meals, I feel a little twinge of missing it.) Something in my brain seems to have switched off. I don’t want gluten. After all, a few crumbs ingested inadvertently can make me sick for two days. Why would I want that?

No, instead, I’m still trying to wrap my mind around this. After all, I had never heard of celiac disease before I was diagnosed. I had been sick and weak and anemic and prone to catching every cold for decades. No one ever uttered the word celiac. I did not hear the word gluten until I was in my late twenties and starting to make bread from scratch. When I was a senior in high school, I took an advanced anatomy and physiology class, where we dissected cadavers. I remember, as a senior, doing the dissections for other students, including a study of the intestines. Still, I never had any idea that food could damage my intestines the way they did for most of my life.

If only the awareness of celiac sprue had been as widespread as it is now starting to be, I could have been spared so much suffering.

That is why I keep this website. That is why I have a segment on the Food Network right now. That is why I am writing my book. I want to help everyone else.

Since October is Celiac Awareness Month, I’d like to do my part for those of you reading who come here for the photographs, the recipes, and the love story. Those of you who may have mystery ailments and not know what is causing them. You might just have celiac disease and not know it.…

Celiac disease is a genetic intolerance for gluten — the elastic protein in wheat, rye, barley, triticale, kamut, and spelt — and it can damage the small intestine for years, silently, or at least in a language that most of us do not know how to recognize. People with headaches dismiss it as stress, those with achy joints wonder if they are experiencing early arthritis, and women with gynecological problems blame it on the hormones. Yet, each of these can be symptoms of celiac disease. For various genetic reasons, the celiac’s body reads gluten as a toxin and attacks it. The antibodies go after the gluten but attack the small intestine instead, leaving it incapable of absorbing proper nutrition. At best, this leaves people feeling exhausted, anxious without knowing why, and always catching colds. Worse yet, it can lead to cancer of the colon and a triggering of other autoimmune disorders, such as diabetes or thyroid problems.

According to the National Institute of Health, celiac disease is the most under-diagnosed disease in the United States. For years, medical schools taught erroneously that celiac disease was a childhood disorder, as rare as 1 in 3000 people. A prominent doctor in Seattle told me, after my diagnosis, that he spent a grand total of five minutes learning about celiac disease in medical school. Now, it is understood that 1 out of 133 Americans suffer from celiac disease. (And the numbers seem to be shifting, as the medical community understands this more thoroughly.) That means there are 2 million people in the United States who should be living gluten-free. Only three percent have been diagnosed — that means millions of people floundering in pain and discomfort for decades without knowing why.

We can change that number, as awareness of celiac disease grows, exponentially. How many of you know someone — a sister, an uncle, an old boyfriend — who had to avoid gluten? Frankly, I have not met anyone yet who is isolated from this. We are all in this together.

Since I started writing this website, a dear friend and my cousin both realized they had celiac disease after hearing my stories. And I have heard from a number of you who stumbled on my site through another food blog, and then realized that you needed to ask your doctor about celiac as well. Maybe you — that’s right, you — reading this now have celiac sprue and you don’t even know it. If this little piece of writing triggers recognition in one person, I’m happy. Two million people suffering for no reason simply will not do.

If any of this sounds familiar, or you would just like to know more, take a look at this fact sheet, entitled Do I Have Celiac?, from the National Foundation of Celiac Awareness. Also, for a thorough, scientific write-up of this dilemma, take a look at the write-up on celiac from the National Institute of Health.

(And I’d like to say thank you to Kelly and Kim from Celiac Chicks, the ever-cool women from New York who urged me to speak out about this. You rock.)

Finally, I’d like to take this opportunity to share another bit of good news, all in the name of spreading awareness. Starting with the December issue, I will be the regular columnist about living gluten-free for the relatively new magazine, Allergic Living. Published in Canada, but available by subscription in the United States as well, Allergic Living is a smart, well-written publication for those of us with food allergies. Instead of focusing on what we cannot eat, Allergic Living focuses on how good life can be, even with dangerous allergies. As you can imagine, I agree. The editor, Gwen Smith is an excellent editor with a respected background in journalism. The magazine is a great read. I’m honored to be part of the team.

If you would like to see a preview of my column, you can read it here. If you would like my recipe for the olive loaf you see pictured above — and it tastes better than it looks — well, you are just going to have buy the magazine!

Or, wait for the publication of my book, Gluten-Free Girl, next fall. But really, that’s just too long to wait, isn’t it?

21 comments on “spreading awareness of celiac disease

  1. UnGourmetGal

    I’m so sorry that stupid, little crumbs can confine you to bed for two days. Did it happen at a restaurant?

  2. Anonymous

    I’d never heard of celiac disease untill my mother-in-law was diagnosed about 10 years ago, after being very ill for a considerable time and under going lots of tests. Since then I have known some children who were diagnosed as babies. Unfortunately the choice of food here in Ireland for celiacs is poor but gradually improving. When I read your recipes I haven’t heard of some ingredients and wonder can you get them here. I’ll be looking into it or else substituting the ingredients for others and hoping it turns out ok!
    Looking forward to your books release, I’ll definitely be purchasing a copy.

  3. Anonymous

    Eloquently written, as usual! Thank goodness there’s someone like you who gives Celiacs a stronger voice.

  4. Kelly

    Thanks Shauna!
    You rock too!

    The new stats from Dr. Green’s book Celiac Disease: A Hidden Epidemic reveal that it’s more like 1 in every 100 people have it and 97% remain undiagnosed. This means out of the U.S. population nearly 3 million people affected. It’s a number like 2,984,442.15…

    Just an interesting factoid. ;)

  5. Shauna

    Ungourmetgal,

    It did happen at a restaurant, this last time. Actually, a crummy wine bar. I’m going to write about it soon. It didn’t keep me to my bed, entirely, but that has happened other times. It’s amazing how pernicious this can be.

    Anne,

    I completely agree. This is a serious medical issue. And I know that people who may feel they should avoid gluten might have a harder time sticking to the life-long diet if they are not given a diagnosis officially.

    Beccy,

    Your mother-in-law is lucky to have been diagnosed and have a daughter-in-law who cares so much. I’m assuming you’re thinking about ingredients such as teff or sorghum flour. If you want, email me, and I’ll see if I can come up with some substitutions for you. And you know, the Chef and I were thinking about honeymooning in Ireland, but then we realized I probably wouldn’t be able to eat that much!

    Sheri,

    Thank you. I’m trying, that’s for sure!

    Kelly,

    Wow. 1 in 100 is even more significant. I’ve heard that figure bandied about lately, but I didn’t know where it came from. Dr. Green? He rocks!

  6. kitchenmage

    Shauna, wouldn’t that be a crumby wine bar? grin

    Please tell me they didn’t really change the name of your book to “Gluten Free Girl” instead of “Life after Wonder Bread” (or a variant). If they did, fight them on it. You write as GFG, and since you’re planning on a writing career, you need to give the book a name of its own, not yours. Marketing is stupid and they should not be allowed near editiorial decisions.

  7. Shauna

    Kitchenmage,

    I know. I’m not thrilled with it either. Deeper into the process, I’ll see what I can do. Right now, the subtitle is A Life Beyond Wonder Bread, and I think that’s going to be more memorable for people anyway. But what can I do? I’m a lowly first-time author. I’ll fight harder on the second book.

  8. Anne

    Ooops — I didn’t make it clear in my earlier rant — the reason for not going gluten-free before testing is that it messes up the tests — the antibody levels drop and the gut starts to heal — which is what you want in the long term, but isn’t helpful when trying to get a proper diagnosis.

  9. Kirsten

    Let me first say, I love your blog! OK, so this whole issue is such a source of frustration for me. I had been having stomach issues for two months (of course, they started just as I was turning 40, the curs-ed 40, this past August). My problems definitely seemed to be diet related. For example, I ate a bagel and thought I would die for the next hour until it was out of my system. Ugh. So I went and had the test. Turned up negative. Meanwhile, while waiting for the results of the test, I cut out gluten. And within three days I was feeling like a new person. So, here’s my question. Can a person be gluten intolerant, but not have celiac disease? Or do I really need to start eating gluten again (I’m not sure I can take that pain again, though) and go see a GI specialist for an “official diagnosis”? Sigh…

  10. Leah

    I have a good friend who cut out gluten on her own, so she can’t get the diagnosis. She isn’t willing to put it back into her diet for a month to get the antibody up, because she knows how bad it is for her and would rather be undiagnosed than have go gluten for a month.

    Anyway–I linked to this to try and get my readers over here. It is so under-reported and people really need to know about it and that it is real.

    Anyway, while it isn’t something I have, I love how you write about it. (I also love how you write about you & Chef.)

    All the best!

  11. kitchenmage

    Shauna,

    Everything the publisher says is up for discussion. You may not win, but you can talk. Even as a first time author, I won a few fights. What does the contract say?

    Seriously, have your agent take them on. That’s what they are for. Tell the agent you really are unhappy with the title change and why. Then ask the aent to talk to the publisher. Give them good ammo and they can win a lot of those fights.

    Good luck. Now we should BOTH get back to writing the books, huh?

  12. magda

    in reply to kirsten,
    could there be something other than gluten that you’re allergic to? i have a good friend who had similar bagel reactions and really thought it was gluten– but it wasn’t. she was just diagnosed as allergic to yeast and dairy. in cutting out gluten, she stopped eating breads– no yeast. she stopped eating packaged foods– no casein. sometimes it can look like one thing, but it’s something entirely else.

  13. Annie

    Kirsten,

    Yes, a person can be gluten intolerant and not have celiac disease, but it’s also estimated that up to 50% of people who do have celiac disease will be unable to be diagnosed by a blood test. This is why official diagnosis is so important — because a positive biopsy is the golden standard. Additionally, the connection between gluten intolerance and celiac disease is unknown.

    It is very possible that some gluten intolerance is actually sub-clinical celiac disease. I was diagnosed as gluten intolerant, as was my mother, but here’s the list of family members confirmed with celiac by biopsy: two of my mother’s sisters and two of her brothers (that leaves one sibling out of six, and he has never been tested); my maternal grandmother; two of my first cousins (only four have been tested); my maternal grandmother’s sister, and two of her three children (again, the third doesn’t think testing is necessary). Do I think that puts me in a different category than many people who are diagnosed non-CD gluten intolerant? Absolutely. Do I feel like “not really knowing” is ever going to be an excuse to slack? Absolutely not. I feel terrible when I eat gluten, but I’m also convinced that either I already have celiac disease, or that I would develop it if I continued.

    For anyone with questions about testing and diagnosis (and fighting the good fight that is involved with getting a doctor to ‘scope you, and scope you CORRECTLY), I urge y’all to visit the online celiac support group forum at Delphi, http://forums.delphiforums.com/celiac. It’s a great group of people with a lot of knowledge but also a range of experiences. There are many people there with CD, many non-CD moms of celiac kids; some people are ‘just’ gluten intolerant, other people are gluten intolerant with a strong suspicion that if they’d pushed harder for a biopsy they would have been confirmed with celiac disease. Every day, living with celiac or with ‘only’ gluten intolerance, involves many personal choices, from which foods you’re willing to consider safe to how hard you’re going to fight your docs before self-diagnosing.

  14. Shauna

    Anne,

    Thank you for your careful iteration of this issue. It’s clear that an official diagnosis can only come if one has been eating gluten regularly. However most of us aren’t willing to go back to it. I feel lucky that I was diagnosed. However, the way I feel with a tiny amount of gluten in me, accidentally, makes it truly clear.

    Kirsten,

    Yes, there is definitely gluten intolerance, as well as celiac. There are also wheat allergies. I have to say — I think the diet and how you feel are the real gold standard, as long as you are working with a professional in all this.

    Kitchenmage,

    Thanks for your words of encouragement. And I will take up the fight. However, right now I’m trying to wrassle a chapter to the ground, and it’s giving me a tough time!

    Magda,

    That’s true. I have to say, going to a naturopath is a good idea in all of this. They are more open to understanding all the food allergies, unless you find a truly wise doctor. I worked with an entire team, which made me feel best.

    Annie,

    Absolutely. I love the Delphi forums, and I’m over there all the time.

    Knowing human psychology, I believe it’s important for everyone to be officially diagnosed. Why? Because this is a hard life to live, sometimes. Being completely gluten-free on speculation requires enormous discipline. we all have our intuitions, and I certainly understand why some people don’t want to go back to eating gluten, just to confirm what they already know. However, the more people who are diagnosed, the more established this will be in the medical community.

    Thank you all for the conversation.

  15. Erica

    I have used a naturopath with great results. Both my kids have had issues — my older son, 12, was diagnosed with Crohn’s by a pediatric GI, but later, after ditching drugs and going on a diet, and then finally to a naturopath we had great results. The naturopath ran a food intolerance test on him as well as a celiac panel. The celiac panel showed gliadin antibodies (a component of gluten), and the food test confirmed his immune response to wheat, oat, barley, rye, yeast (as well as many other foods — soy, egg and milk). The bottom line is he has been gluten-free for 3 months and getting better every day.

  16. Anonymous

    hey– Thanks for all the terrific effort and information you put forth. I wish this had been availiable in 1977 when I was diagnosed. Hidden glutens until the ingrediants act was passed had been the bane of my life. Who knew BBQ sauce had wheat? And with your recipes GF things no longer have to taste like styrofoam or playdough. Thanks again!

  17. Michael Thorn

    Save the date!
    The largest gluten-free consumer event in North America is coming!
    The 2nd Annual Gluten-Free Vendor Fair & Conference is scheduled for April 29th, 2007 at Farmingdale State College, Farmingdale, NY. The event is presented by Suffolk County Celiacs0 a Branch of GIG. For more information visit our website at http://www.suffolkcountyceliacs.org

  18. kate

    thank you for writing– i check your blog all the time. today i found out that my baby and i both have celiac– i have gone to dr.s for almost 20years– thank goodness for genetic testing and a dr. that believed me. thank you sooo much for writing and all your research.

  19. Annie

    I have had Celiac for several years,for the last several Months,I have a terrible Itching over most of my Body. I am on a very strict G F Free Diet,but could this be a part of Celaic Spruce?? I need all the help I can get. Our Doctors have tried every thing they know ‚with out helping. Thank You for any Imput
    Annie

  20. alba sommer

    I just bought a gluten & lactose free yogurt that’s delicious. It’ manufactured by GREEN VALLEY. When I became lactose intolerant, I was very upset. I really had missed cheese & also yogurt, now at least I have a good yogurt, next my pursuit of a good cheese. I wanted to share this with patients that have Celiac Disease. Thank you.

    Alba

  21. Kim

    Thank you for all the info. Last February I started getting dizzy. After several specialist and two mri’s and no answers I decided I needed a break. I am trying to get my life back. I have not driven since my dizziness started and it is hard on my family. I have been doing a lot of reseach on different symptom when is i have. Sometimes when I eat certain foods I get so sick I end up in the emergency room and need three bags of fluids to get me rehydrated. I just now am realizing that all my symptoms lead to one thing. I am going to call my doctor tomorrow. Last week at an awards ceremony I ate one homemade cookie within an hour i was in so
    much pain I could barely walk. I can’t do it anymore. Something has to change. Hopefully I finally get an answer.