Digestive Diseases News
Spring 2006

Celiac Disease ‘Greatly Underdiagnosed,’ Says NIH Consensus Panel

NIDDK to Launch Campaign to Boost Physician Understanding

Hundreds of thousands of patients with celiac disease remain undiagnosed, an independent consensus panel convened by the National Institutes of Health (NIH) has concluded. The panel recommended that doctors think about celiac disease as a possible diagnosis when considering the origin of a wide range of symptoms, from short stature to abdominal pain to fatigue.

The panel concluded that as many as 1 percent of all Americans suffer from celiac disease, more than previously thought. Many of those people, however, have never received a diagnosis of celiac disease and are not being treated.

“The main point is that celiac disease is grossly underdiagnosed, and it is much more common than physicians appreciate,” said Charles Elson, M.D., University of Alabama at Birmingham and chair of the consensus panel.

Effective Treatment Exists

Celiac disease is caused by an immune response to gluten in certain grains, and an effective treatment—a gluten-free diet—offers most patients relief from the damage and symptoms. Still, Elson said many physicians do not test for the disease, often leading to a long gap between the onset of symptoms and the diagnosis of celiac disease.

Diagnosis rates have further been depressed, Elson said, because of the array of symptoms linked to celiac disease. Though many patients complain of gastrointestinal problems—the traditional presentation of the disease—those with other symptoms may be overlooked. “We are missing it,” said Elson, “and the reason is that celiac disease does not always present with the classic symptoms. Some people are presenting with gastrointestinal issues, but others are not.”

Awareness Campaign Prepared

In response to the panel’s recommendations, the NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is preparing to launch a physician-directed awareness campaign to emphasize disparate disease presentations, testing, and dietary interventions. “Heightened awareness of this disease is imperative,” the consensus panel report concluded. “Education of physicians, registered dietitians, and other health providers is needed.”

The 13-member panel’s report followed 2 days of extensive discussions and testimony from experts about the disease, its diagnosis, and treatment.

In addition to pushing doctors to more aggressively evaluate patients for celiac disease, the consensus panel called for efforts to refine the criteria by which the disease is diagnosed, better define what constitutes a “gluten-free diet,” improve testing of food for traces of gluten, and form a federation of interested groups that can work together to improve education and research.

Though the treatment for celiac disease is well defined, the members of the consensus panel also created an extensive list of research priorities for the study of celiac disease, ranging from better data about the prevalence of the disease in specific populations to alternatives to the gluten-free diet and improved understanding of the link between celiac disease and other health problems.

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NIH Publication No. 06–4552
May 2006