Celiac disease is considerably under-diagnosed, according to an independent consensus panel convened by the National Institutes of Health (NIH). The panel, charged with assessing all of the available scientific evidence on celiac disease announced 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 per cent of the US 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 Charles 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 might 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 NIH Consensus Development Programme, 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.
The 13-member panel included practitioners and researchers in gastroenterology, pediatrics, pathology, internal medicine, endocrinology, a dietitian, a geneticist, and a consumer representative.