Coping with celiac disease

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WHAT IF YOUR DOCTOR told you that eating a certain food, say, pizza, would be devastating to your health? You might not like it, but you'd learn to live with it. But what if it were more than just pizza? What if you were told to avoid all bread, bread crumbs, and pasta? And dozens of breakfast cereals, canned soups, luncheon meats, and salad dressings? And a wide variety of ice creams, ice cream cones, cookies, cakes, puddings, and pies? And most chewing gum, beer, canned tuna, and hot dogs?

That's what it's like for people who have celiac disease, an intestinal disorder in which the body reacts to a protein called gluten that's found in literally hundreds of common foods. The condition, also known as celiac sprue, tropical sprue, or gluten-sensitive enteropathy, isn't as rare as experts once thought. In the past, estimates of its prevalence ranged from one in every 2,000 to 5,000 people. But recent research indicates that it may be much more common than that, occurring in perhaps as many as one in every 500 people in the U.S., or more than half a million Americans. The disease tends to run in families, especially those of northwestern European descent.

The reason gluten is so harmful to people with celiac disease is that it damages the lining of the small intestine, leaving them less able than others to absorb nutrients and more vulnerable to gastrointestinal distress. In fact, every time someone with celiac disease eats a food with gluten, a part of his or her digestive tract is damaged. The gluten protein sets off an alarm in the body's immune system, causing the intestinal lining to become inflamed and swollen. In turn, tiny projections lining the intestine, called villi, shrink--and are sometimes destroyed altogether.

Without healthy villi, nutrients from food can't be properly absorbed. The result of this malabsorption: painful stomach bloating, cramps, diarrhea, abnormally-colored or foul smelling stools, fatigue, weight loss, and myriad vitamin and mineral deficiencies. Long-term consequences can be severe: osteoporosis, nerve damage, even intestinal lymphoma.

But there's no "typical" case of celiac disease, and the symptoms can mimic the symptoms of many other illnesses. Not surprisingly, diagnosis has traditionally been difficult. In one survey in Canada, 43 percent of those with the condition reported that they had been diagnosed with an assortment of ailments-such as anemia, stress, ulcers, and "nerves"-before finding out that celiac disease was the condition responsible for their discomfort.

In children, failure to grow normally (as a result of the damaged intestine's inability to absorb critical nutrients from food) is often a key clue that the disease may be at work. But some people with celiac disease can remain symptom free, and therefore undiagnosed, until the disease is "triggered" in adulthood by gastric surgery, pregnancy, or perhaps a viral infection. Even during the symptomless years, however, they could be damaging their intestines by eating gluten-containing foods.

Fortunately, diagnosis of celiac disease is getting easier. Screening tests are now available for people who suspect they may have the condition, either because of family history or for other reasons. The best such "screen" is a simple blood test which detects the presence of a substance called IgA antiendomysial antibody. About 98 percent of people with celiac disease have this antibody in their blood.

It takes vigilance to make symptoms subside
The only way to relieve the symptoms of celiac disease--and protect the intestinal lining against further damage--is to avoid all foods that contain gluten. Once the irritating gluten protein is removed from the diet, the intestinal lining can start to heal in 3 to 6 days, although full improvement may take up to 6 months.

In theory, a gluten-free diet should be simple to follow, since gluten is found only in wheat, rye, oats, and barley. But what makes the diet so exacting--and time-consuming--is that the list of foods to avoid doesn't stop with those grains in their whole forms. It also includes all foods and food ingredients derived from them. And that list is quite extensive.

Wheat by-products and gluten derivatives are used as thickeners and fillers in countless prepared and processed foods, including nondairy creamers; cheeses made with vegetable gum; vegetables in cream sauce; meat loaf; and hot dogs. Gluten can also appear in hydrolyzed or texturized vegetable protein (made from a grain mixture that may include wheat) in such items as canned tuna and selfbasting turkey; stabilizers or emulsifiers in ice cream; caramel coloring in candies; or condiments made with distilled white vinegar, such as ketchup.

"Contamination" can also occur in factories. For example, a "safe" rice cereal produced on the same line as a gluten-containing wheat bran cereal could be tainted with traces of gluten. Even medications are suspect, as the ingredients that bind a pill or tablet together may contain gluten. What's more, food products and medications may change formulations from time to time, requiring constant vigilance in label-reading and questioning manufacturers.

What can someone following a gluten-free diet eat with impunity? Fresh meats, fish, and poultry; milk, eggs, and unprocessed cheeses; dried beans; and plain, fresh, or frozen fruits and vegetables. As for "safe" grains, corn and rice are the most readily available. You can also make gluten-free bread using cornmeal, rice or potato starch flour, arrowroot starch, and other ingredients. Several companies produce specially prepared breads, pastas, and cereals using "allowed" flours and grains (see below).

The strict diet must be followed for life to prevent symptoms from recurring. Going on and off the regimen may reduce its effectiveness, and what's more, "cheating," even if it doesn't produce immediate symptoms, can increase the risk of developing malnutrition or intestinal lymphoma.

Fortunately, support groups across the country are available to help people with celiac disease cope. The list below includes several well known national organizations and mail-order companies.

Celiac Sprue Association/USA, Inc.; P.O. Box 31700, Omaha, NE 68131-0700; (402) 558-0600; http://csaceliacs.org. Publishes a newsletter and brochures; organizes support chapters throughout the country.

Gluten Intolerance Group of North America; P.O. Box 23053, Seattle, WA 98102-0353; (206) 325-6980. Offers a good gluten-free cookbook and newsletter.

Ener-G Foods, Inc; P.O. Box 84487; Seattle, WA 98124-5787; (800) 3315222. Excellent mail-order source for special products, including gluten-free flours and flour mixes, dry soups, and flavorings.

Dietary Specialties; P.O. Box 227; Rochester, NY 14601; (800) 5440099. Offers gluten-free baked goods and mixes.

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