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.
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.