Celiac Disease: Not So Rare, After All


CELIAC DISEASE, a digestive disorder in which the body can't handle a protein called gluten, was once thought to be a rare condition. But in the largest study of celiac disease to date, researchers at the University of Maryland have found that it's much more prevalent than previously believed. They approximate that it afflicts as many as 1.5 million Americans, or about 1 in every 133 people, as opposed to the 1 in 10,000 estimated previously. That makes celiac disease more prevalent than Crohn's disease, ulcerative colitis, and cystic fibrosis combined, according to study leader Alessio Fasano, MD.

It's no small problem. Gluten damages the lining of the small intestine in people with celiac disease, often producing painful stomach bloating, cramps, diarrhea, and constipation. Fatigue, weight loss, and malnutrition are common symptoms, too. There are also extremely serious long-term consequences: osteoporosis, nerve damage, even an increased risk of intestinal cancer.

The only treatment for celiac disease is a gluten-free diet that requires avoiding wheat, rye, barley, and (sometimes) oats, as well as the hundreds of foods and ingredients made with those grains or their by-products. The list includes everything from pasta and bread crumbs to dozens of breakfast cereals, canned soups, and luncheon meats--even many ice creams.

Getting screened
Screening for celiac disease involves a simple blood test that "looks for" an antibody called anti-endomysial antibody, or EMA. If the test is positive, it's important to get an intestinal biopsy--considered the gold standard of celiac disease diagnosis--for full confirmation. While the blood test is at least 90 percent accurate, says Tufts gastroenterologist Joel Mason, MD, doctors don't want to advise following a lifelong, highly restrictive gluten-free diet in the small percentage of cases with false positives.

As far as who should get tested, "there isn't a really good black-and-white answer," Dr. Mason says. Certainly, those with a first-degree relative who has the condition should consider testing because there's a genetic link. If more distant relatives are affected, like cousins and grandparents, "it's a judgment call."

Anyone who has "classic" celiac disease symptoms like diarrhea, weight loss, or anemia that can't otherwise be explained would also be a candidate. People with dermatitis herpetiformis (a skin condition strongly linked with celiac disease) or unexplained nutrient deficiencies are candidates for screening, too, Dr. Mason comments. In children, persistent, unexplained constipation is sometimes the telltale symptom and therefore should prompt screening as well.

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