Celiac disease under diagnosed NIH consensus panel finds

Main Category: Public Health
Article Date: 02 Aug 2004 - 1:00 PDT

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Celiac disease is considerably under-diagnosed, according to an independent consensus panel convened last month by the National Institutes of Health (NIH). The panel, charged with assessing all of the available scientific evidence on celiac disease, announced recommendations for the appropriate diagnosis and management of this disease, which was previously believed to be rare. Celiac disease may affect 3 million Americans. The disease is present in 0.5 to 1% of the U.S. population, ten times higher than previous estimates.

Columbus Children's Reserach Institute Physician Participates in Panel, Which Recommends Six Key Strategies for Disease Management

"The NIH consensus statement is a gentle wakeup call for physicians and other healthcare providers to consider this common, multisystem disorder in patients who complain of the various symptoms of celiac disease," said John Barnard, MD, director of the Columbus Children's Research Institute Center for Cell and Vascular Biology, professor of pediatrics at The Ohio State University College of Medicine and Public Health, and a member of the consensus panel.

Celiac disease is caused by an immune response to the gluten in certain common grains and a gluten-free diet is a very effective treatment. However, if physicians do not recognize when to test for the disease, patients suffer needlessly. Because the disease has been thought to be rare, testing for it may not occur to many physicians. The panel found that increasing physician awareness of the various manifestations of celiac disease and appropriate use of available testing strategies may lead to earlier diagnosis and better outcomes for celiac patients.

Based on its assessment of an extensive collection of medical literature and expert presentations, the panel identified six elements essential to treating celiac disease once it is diagnosed:

C - Consultation with a skilled dietitian,

E - Education about the disease,

L - Lifelong adherence to a gluten-free diet,

I - Identification and treatment of nutritional deficiencies,

A - Access to an advocacy group, and

C - Continuous long-term follow-up.

The full text of the panel's consensus statement is available at http://consensus.nih.gov Statements from past conferences and additional information about the NIH Consensus Development Program are also available at the Web site, or by calling 1-888-644-2667.

The panel's statement is an independent report and is not a policy statement of the NIH or the Federal Government. The NIH Consensus Development Program, of which this conference is a part, was established in 1977 as a mechanism to judge controversial topics in medicine and public health in an unbiased, impartial manner. NIH has conducted 119 consensus development conferences, and 22 state-of-the-science (formerly "technology assessment") conferences, addressing a wide range of issues.

The conference was sponsored by the Office of Medical Applications of Research and the National Institute of Diabetes and Digestive and Kidney Diseases, of the NIH. Cosponsors included the National Institute of Child Health and Human Development, the National Cancer Institute, the National Institute of Allergy and Infectious Diseases, the U.S. Food and Drug Administration, and the U.S. Department of Agriculture.

The 13-member panel included practitioners and researchers in gastroenterology, pediatrics, pathology, internal medicine, endocrinology, a dietitian, a geneticist, and a consumer representative. The panel reviewed an extensive collection of medical literature related to celiac disease, including a systematic literature review prepared by the University of Ottawa Evidence-Based Practice Center, under contract with the Agency for Healthcare Research and Quality (AHRQ). A summary of the Evidence Report on Celiac Disease is available at http://www.ahrq.gov/clinic/epcsums/celiacsum.htmThe full report will be available later this summer. The archived videocast of the conference sessions is available at http://consensus.nih.gov

"Recent estimates suggest that celiac disease affects one in 100 persons in the U.S.," Barnard said. "Many affected persons have no symptoms or relatively subtle complaints. It is important for healthcare providers to keep celiac disease on their radar screens as they evaluate patients with potentially compatible complaints. As a result of this effort by the NIH, I believe major progress will be made in the diagnosis and treatment of celiac disease in the net few years."

The NIH comprises the Office of the Director and 27 Institutes and Centers. The Office of the Director is the central office at NIH, and is responsible for setting policy for NIH and for planning, managing, and coordinating the programs and activities of all the NIH components. The NIH is a component of the U.S. Department of Health and Human Services.