updated 11/2/2004 10:28:09 PM ET 2004-11-03T03:28:09

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 on Wednesday.

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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 than those long taught in medical school.

Needless suffering
“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.”

The panel urged 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.

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.

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.

Symptoms often misdiagnosed
Doctors long thought of celiac as a childhood ailment — as one NIH panelist put it, too-small youngsters with large pot bellies. 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 intestinal symptoms may be the most common celiac sufferers today — and recognition of that fact, thanks in part to the new blood tests, has spurred higher prevalence estimates, Elson explained.

Up to 1 percent of the U.S. population now is thought to have celiac, the panel concluded. That’s roughly 3 million people, double an estimate published just last year — yet just a fraction, perhaps a tenth, are diagnosed, Elson.

Most at risk are relatives of celiac sufferers, people with Type 1 diabetes or Down syndrome, and people with other autoimmune disorders.

Gluten-free diet for life
Most patients recover with a gluten-free diet for life. But gluten can be hidden in foods not commonly associated with grains, such as some candies and soups, making adherence difficult.

The panel also urged better testing and labeling of gluten in foods. A bill to improve food labeling is pending in Congress.

For the diagnosed, the panel recommended six elements key to disease management:

  • Consulting a dietitian.
  • Education about the disease.
  • Lifelong gluten-free diet.
  • Identifying celiac-caused nutritional deficiencies.
  • Access to an advocacy group.
  • Continuous follow-up by appropriate specialists.

© 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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