WASHINGTON — Celiac disease isn't nearly as rare as once thought: Roughly 3 million Americans may have the severe digestive disorder, most undiagnosed and thus suffering unnecessarily, an expert panel told the National Institutes of Health this week.
The panel urged the NIH to launch a major education campaign for doctors and the public to improve awareness of the myriad symptoms, a recommendation that won applause from celiac advocacy groups.
"We have a very effective treatment — a gluten-free diet," said Dr. Charles Elson of the University of Alabama at Birmingham, the panel chairman. "But if physicians don't recognize when to test for the disease, patients are going to suffer needlessly."
While the federal agency had no immediate comment on an education campaign, it convened the three-day meeting in part to raise the profile of the little-known disease, and reports from such NIH-convened panels often influence physician practices.
On average, patients suffer symptoms for 11 years before they're diagnosed, because the disease, triggered by the gluten protein found in certain grains, is so little understood even by physicians, the panel found.
Simple new blood tests can help diagnose celiac more easily today than just a few years ago, but only if doctors know to order them — and many patients complain of symptoms very different from those long taught in medical school.
Celiac disease occurs in people with a genetically spurred intolerance of gluten, found in such grains as wheat, barley and rye. When they eat gluten, the immune system reacts improperly and damages the inner lining of the small intestine, blocking proper nutrient absorption. Untreated, it can lead to serious vitamin deficiencies, bone-thinning osteoporosis, occasionally even gastrointestinal cancers.
Doctors long thought of celiac as a childhood ailment, but it can show up at any age and is most often diagnosed in middle-aged Americans.
Classic symptoms include diarrhea, abdominal pain, gas, bloating and weight loss.
But many patients don't experience those signs and instead report so-called atypical symptoms, including a blistering, itchy skin rash, anemia, short stature, delayed puberty, infertility and tooth enamel defects.
In fact, patients without the classic symptoms may be the most common celiac sufferers today. Up to 1 percent of the U.S. population now is thought to have celiac disease, the panel concluded. That's roughly 3 million people, double an estimate published just last year — yet just a fraction, perhaps one-tenth, are diagnosed, Elson said.
Most patients recover with a gluten-free diet for life. But gluten can be hidden in foods not commonly associated with grains, such as candy or soup. The panel also urged better testing and labeling of gluten in foods. A bill to improve food labeling is pending in Congress.
For more information:
Celiac Disease Foundation: www.celiac.org
Houston Celiac Support Group: www.houstonceliacs.org; 281-679-7608
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