NIH Consensus Development Conference on Celiac Disease.

Abstract

Objective: To provide health care providers, patients, and the general public with a responsible assessment of currently available data regarding celiac disease.

Participants: A non-DHHS, non-advocate 13-member panel representing the fields of internal medicine, gastroenterology, medical genetics, pathology, endocrinology, nutrition, and a consumer representative. In addition, 19 experts in related fields presented data to the panel and to the conference audience.

Evidence: Presentations by experts; a systematic review of the medical literature provided by the Agency for Healthcare Research and Quality; and an extensive bibliography of celiac disease research papers, prepared by the National Library of Medicine. Scientific evidence was given precedence over clinical anecdotal experience.

Conference process: Answering pre-determined questions, the panel drafted its statement based on scientific evidence presented in open forum and on the published scientific literature. The draft statement was read in its entirety on the final day of the conference and circulated to the audience for comment. The panel then met in executive session to consider the comments received, and released a revised statement later that day at http://consensus.nih.gov. This statement is an independent report of the panel and is not a policy statement of the NIH or the Federal Government.

Conclusions: Celiac disease is an immune-mediated intestinal disorder with protean manifestations. Celiac disease is common, affecting 0.5 to 1.0 percent of the general population of the United States, but is greatly underdiagnosed. There are now specific and sensitive serologic tests available to aid in diagnosis that need to be more widely applied. The treatment of celiac disease remains a lifelong gluten-free diet, which results in remission for most individuals. The classic presentation of diarrhea and malabsorption is less common, and atypical and silent presentations are increasing. Most individuals are being seen by primary care providers and a broad range of specialists. Therefore, heightened awareness of this disease is imperative. Education of physicians, registered dietitians, and other health providers is needed. The panel recommends the following: (1) Education of physicians, dietitians, nurses, and the public about celiac disease by a trans-National Institutes of Health (NIH) initiative, to be led by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), in association with the Centers for Disease Control and Prevention; (2) Standardization of serologic tests and pathologic criteria for the diagnosis of celiac disease; (3) Adoption of a standard definition of a gluten-free diet based on objective evidence such as that being developed by the American Dietetic Association; (4) Development of an adequate testing procedure for gluten in foods and definition of standards for gluten-free foods in the United States to lay the foundation for rational food labeling; (5) Formation of a federation of celiac disease societies, celiac disease interest groups, individuals with celiac disease and their families, physicians, dietitians, and other health care providers for the advancement of education, research, and advocacy for individuals with celiac disease.