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Diary of a celiac

A foodie discovers she's allergic to gluten - and it's hidden in french fries, ice cream, and other unlikely places

By Louisa Kasdon
Globe Correspondent / April 23, 2008
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I was always the one with the cast-iron stomach. I could eat everything, travel everywhere, and sample it all. I might pass on the sauteed sheep's eyeballs in Marrakech, or the mystery meat stew offered to me in a village in southwestern Mali, but that was just squeamishness. Every once in a while, I'd pick up a bug, a little intestinal something from my more exotic travels, and I'd use the three-day course of antibiotics I carried in my travel kit. It worked like a charm. Until a year ago.

My most exotic destination for months had been California, but I'd snagged a stubborn bug that wouldn't decamp, even after three rounds of medicine. Rather than offering me a fourth refill, my doctor called me in.

That's when I discovered that I am gluten intolerant, which means I don't have a full-blown case of celiac disease - a chronic autoimmune disorder where certain grain proteins, collectively called "glutens," become toxic to the lining of the small intestine. But it also means that almost every morsel on my plate had to change and I had to become one of those pesky people who interrogate waiters, hosts generous enough to invite me over, and anyone else presenting me with food.

No one is quite sure what triggers celiac disease in individuals who carry the gene. A first attack can occur at midlife in an otherwise asymptomatic person, and be brought on by injury, illness, pregnancy, or stress. Researchers believe that the gene for gluten sensitivity is as old as the human race, but thanks to recent advances in testing, the diagnosis of celiac is skyrocketing. Current estimates are that 1 to 2 percent of the population worldwide (one in 133 Americans) carry the gene. Currently more than 183,000 websites address concerns surrounding the illness. On Sunday, Healthy Villi, an 850-member Massachusetts organization devoted to celiacs, will host a one-day conference in Boston.

As a result of my diagnosis, I've had to spend the last 12 months relearning how to eat. At first I was advised to be careful about gluten, but not to go crazy. "Don't drink beer, drink vodka," one of my doctors cheerily suggested. Gluten seemed like a science-fair word to me - vaguely familiar but mysterious. I learned that gluten is present in nearly everything I like to eat: bread, pasta, crackers, cakes, cookies are the obvious foods. But there are many more: it's in french fries, soy sauce, sushi, ice cream, salad dressings. It may sound overly dramatic, but for someone who lives to eat, accepting these huge restrictions was very difficult. The diet is straightforward: Avoid the proteins found in wheat, barley, rye, and contaminated oats (those made in factories where wheat products are also made). Was there anything left to eat?

Denial came first. I ran with the doctor's suggestion that I didn't have to be crazy-careful. I was off to rural Zambia for several weeks of work. In an environment where bread is quite possibly the only safe staple, and pizza the only edible airport food, the trip was challenging. My gut was in a state of constant agitation. When I returned, I ramped up the gluten-free learning curve. I studied all the fine print in my pantry and at the grocery store. I found that gluten and gluten derivatives were running wild: It's in soups, condiments, and in many convenience foods. I dumped my "old" food at the local pantry. At the grocery store, I found more than enough gluten-free products to re-stock my larder.

Frankly, many aren't worth eating. My ever-helpful husband (whose solution to many domestic issues comes with a cord attached) bought me a fancy bread machine and ordered sacks of bean- and seed-based flours online. I tried. It all tasted like cardboard. Angry and grumpy, I gave up. I know there are people patient enough to make fine-tasting desserts (see recipes at left). But I refused to try any more of the gluten-free "fake" foods, and confined myself to a very basic, boring - and good for me - diet.

At home, we ate more rice, and a lot more vegetables. Our meals became simpler, less bistro, more steakhouse. I began experimenting where I might use cornstarch or rice flour in place of wheat flour to thicken soups and sauces, making all soups from homemade stocks, or cooking some dishes for the family and others for myself. I discovered wheat-free soy sauce and a brand of rice and seed crackers worthy of excellent cheese. If I was cooking for others, the hardest task was to remember not to taste.

It took a few months to master home cooking, but I still wasn't ready to go public. What do you say to a hostess? How do you refuse the homemade ravioli she has spent the day rolling out? It was all too embarrassing. I managed by inviting people over more often, where I could set the menu. But I eat out often, and I also wasn't comfortable asking restaurants for gluten-free options (these used to be grilled meat or fish, along with steamed vegetables; now more chefs are offering enticing gluten-free entrees; see list at bottom left).

I decided I would eat carefully but not compulsively and accept a few days of discomfort once in a while. This worked for several months. Then a funny thing began to happen. The less gluten I consumed, the more sensitive I became to eating any. Small indulgences - a taste of cake, a perfect onion ring - would set me back for days. Going off the diet was more trouble than it was worth. More importantly, every flare-up meant I was flirting with a full-blown condition.

I conquered my pride and explained the situation to friends and family, began to ask waiters for gluten-free choices, even carried my own bottle of wheat-free soy sauce to our favorite Chinese restaurant. Eating out is far from foolproof. Gluten is tricky and insidious, regularly dusted on grilled fish or chicken, lurking in the pasta water over which chefs often steam vegetables.

I'm lighter and healthier, almost annoyingly virtuous on this diet, which is close to carb-free. I learned to ask questions without apologizing, and began to compile a list of restaurants with reliable cooking. Travel is still a bear. But for shorter trips, I've learned to pack my own food. My advice: BYO.

All things considered, life is delicious, with or without gluten. But I do miss the bread.

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