CELIAC DISEASE UNDER-DIAGNOSED

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NIH CONSENSUS PANEL FINDS CELIAC DISEASE UNDER-DIAGNOSED

Panel Recommends Six Key Strategies for Disease Management

BETHESDA, MARYLAND - Celiac disease is considerably under-

diagnosed, according to an independent consensus panel

convened this week by the National Institutes of Health

(NIH). The panel, charged with assessing all of the

available scientific evidence on celiac disease announced

today its 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.

" We know that celiac disease is caused by an immune

response to the gluten in certain common grains, so we have

a very effective treatment - a gluten-free diet - but if

physicians don't recognize when to test for the disease,

patients are going to suffer needlessly " , said

Elson, MD, of the University of Alabama at Birmingham, and

chair of the consensus panel. He added, " Because the

disease has been thought to be rare, testing for it may not

occur to many physicians. We hope that this conference will

help to increase physician awareness. "

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 panel released its findings in a public session this

morning, following two days of expert presentations and

panel deliberations. The full text of the panel's draft

consensus statement will be available following the

conference at <http://consensus.nih.gov>. The final version

will be available at the same Web address in three to four

weeks. 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.htm>. The

full report will be available later this summer.

The archived videocast of the conference sessions will be

available shortly at <http://consensus.nih.gov/>.