Discovering Celiac Disease: My Gluten-Free Way

Choosing a gluten-free diet is popular right now, even among people who do not have an allergy to gluten and consequently, Celiac disease. Gwyneth Paltrow admits that she is not allergic to gluten, but has stated that she feels better eating gluten-free.  “Cupcake Wars” contestants have included owners of gluten-free bakeries, suggesting that eating gluten-free is bigger and bigger business. Even more convincing is that product labels now carry the words “gluten free” prominently, making it easier for consumers to choose wisely.

In the United Kingdom, doctors have long tested for Celiac and recommended a gluten-free diet for people allergic to gluten, a protein resulting when wheat, rye, and barley grains are processed. Now America’s medical professionals learn about this autoimmune disease, including the fact that about one in 105 people are allergic to gluten and therefore their bodies are unable to absorb gluten properly. They experience frequent loose stools, fatigue, hives,  joint aches, and in infants, a failure to thrive.

Some people, including Anthony Bourdain, think that food allergies are over-diagnosed in the United States. When I heard him in concert promoting his television show, charmed life, and latest book, he noted that few Europeans require dairy-free or gluten-free foods. In his opinion, Americans are pretty silly and should consume a well-balanced diet for maximum health and happiness. Many young mothers with children afflicted with gastric upsets and skin conditions will counter that food sensitivities are very real and very hard to pin down.

Still, try Googling “gluten-free overdiagnosed” and see the long list of articles and programs arguing that yes, indeed, gluten allergies are over-diagnosed, especially in that many people self-diagnose or  just choose not to eat gluten. I even met a woman in the aisle at Whole Foods who professed that she did not undergo any medical testing, but decided that she and her husband would be much better off if they avoided gluten.

Imagine then my discomfort in having to inquire about gluten when ordering in restaurants or announcing to others that I must pass by their dish on the potluck table because it contains gluten products. I see an invisible veil drop as one of two things occurs to them. The first is “What the hell is gluten? Should I know what that word means?” and the second is “Oh, that. Another faux Celiac.”

A few people ask what gluten is, and I am repeatedly surprised to learn that most people do not seem to know what goes into the products they consume. When I answer that gluten is a protein found in foods made from wheat, rye, barley, and in the U.S., oats because they are processed in the same mills as wheat, I usually just confuse my listener.

But if people follow that explanation, they then assume that I just can’t eat bread until I remind them that pizza crust, pasta, cakes, and pies are also made with wheat. Then I add that some vinegars, almost all soy sauces, many candies, several soups, lots of salad dressings, and even ice cream may contain starches made from grains; in other words, gluten. One ubiquitous restaurant-chain adds wheat flour to its whipped butter so shopping and eating out are challenging to those of us with genuine gluten allergies.

If anyone still wants to talk to me, they next want to know what happens if I consume gluten, and I grimace. It’s personal and embarrassing. The gastrointestinal consequences are just plain gross so I usually begin with the mildest symptom: hives. Itchy, red blotches spring forth when I have stumbled upon gluten, and it’s unpleasant.

What makes all of this even worse is that I am overweight. Since my body doesn’t use the proteins wisely, I often have the feeling of being hungry, and I didn’t understand why until a physician’s assistant decided to test for gluten sensitivity in order to explain the symptoms of which I complained. Learning that I am sensitive to gluten liberated me from one IBS diagnosis after another and advice to live better through chemistry because I couldn’t stop the hives from appearing and reappearing. I felt better almost instantly and continue to feel better, especially when compared to those earlier decades, but I still haven’t overcome the habit of overeating. (I’m working on it, and I will thank you for your encouragement.)

I prefer to be an undemanding sufferer. When people suggest we eat out, I know that I will quite likely have some trouble thereafter. Waiters and waitresses often have no idea what goes into the foods they serve, and most have no idea what gluten is. A few restaurants have a gluten-free menu (it’s pretty slim pickings, I might add). Thus, quite often my go-to menu item is a salad dressed with lemon juice and oil because I hate to become a spectacle, and I hate to send the server back to the kitchen to discover the ingredients for a particular item on the menu. I also hate to hold up all the other people at the table while we all wait upon the kitchen’s answer.

If you are the mother of a child with food sensitivities, I sympathize. It can be maddening to isolate the offending food. My own daughter was sensitive to dairy for several early years, but as many kids do, she overcame. Her allergy to nylon–not a food, of course–has never waned, however. She was miserable when wearing garments with any nylon content and complained that something was stinging her skin. A physician ordered testing and the allergy found; her life became so much easier then just as mine as after fifty years of misery.

So perhaps Celiac or gluten allergies are over-diagnosed, but that has more to do with raising our consciousnesses than with abuses of medicine. Just do your homework, get tested if you think you should, and fade into the background. You’ll feel so much better if you do.

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Connye Griffin
My life has both purpose and meaning because I weave words together to inform, inspire, and illustrate. As a former teacher with thirty-seven years of experience and now as a freelance writer and editor, I have coached others to communicate their messages effectively and listened closely to help others record their memories. I have written, edited, and coached all my days, and these have made for very good days.