New educational campaign on celiac disease

The Children's Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) today announced the launch of a new educational campaign on celiac disease, one of the most common genetic digestive conditions possibly affecting as many as three million Americans (up to 1%).

This announcement comes immediately after a panel of leading medical experts reached a consensus that there is a significant need for increased education of physicians, dietitians and the public about celiac disease.

Convened in Washington, DC, the National Institutes of Health Consensus Development Conference on Celiac Disease involved the participation of 32 world-renowned speakers and panelists along with more than 300 attendees who reviewed and discussed the latest scientific information on the disease. The findings show that a major problem concerning celiac disease is the under- recognition and lack of diagnosis, and therefore, lack of management of the disease leading to long-term consequences such as intestinal malignancies, osteoporosis, and infertility. Five members of the CDHNF scientific advisory board presented data and the President and President-Elect of NASPGHAN served as panel members.

Celiac disease is a multi-system disorder that may begin either in childhood or adult life and is characterized by specific microscopic changes that can be identified in the gastrointestinal tract. Individuals with the disease are affected by foods containing gluten -- a protein found in wheat, barley and rye -- which cause lifelong damage and inflammation to the small intestine. Symptoms of celiac disease can include abdominal cramping, distention, diarrhea and even constipation and left untreated, celiac disease may lead to vitamin and mineral deficiencies, growth stunting and other problems. There is a strong genetic predisposition to celiac disease. Early diagnosis and treatment may decrease the frequency of associated autoimmune disorders that are seen in individuals with celiac disease. To address this problem as early in the life-cycle as possible, CDHNF is educating health care providers and parents about this disease. Since it has been proven that early detection and intervention can prevent long-term consequences, CDHNF and NASPGHAN are focusing on accurate and timely diagnosis and treatment in children.

"We plan to raise greater awareness about celiac disease and urge physicians to add it to their screening checklist," said Alessio Fasano, M.D., chair of the CDHNF Celiac Disease Campaign, NIH Consensus speaker and director of the Mucosal Biology Research Center for the University of Maryland School of Medicine Center for Celiac Research. "We now have the information we need on how to diagnose and treat this disease and we need to start applying that knowledge into practice."

To help spread the word, the campaign will include physician materials such as a celiac disease physician CME slide set, a nationwide Grand Rounds program, and a soon-to-be released NASPGHAN "Clinical Practice Guideline on the Evaluation and Management of Celiac Disease in Children," in the fall of 2004.

In addition, a new Web site, http://www.celiachealth.org will provide resources for the medical professional community and the general public. The Web site, which is currently under construction, will be launched on July 1, 2004.

"This campaign developed by CDHNF is the first of its kind. Our long-term objectives are to improve the quality of life for children with celiac disease and change pediatric and adult health outcomes by early detection and intervention," said Ivor Hill, M.D., chair of the NASPGHAN Celiac Disease Guidelines, NIH Consensus speaker and Professor of Pediatrics, Wake Forest University School of Medicine.

Sponsorship of this campaign is made possible by unrestricted educational grants provided by the University of Maryland Center for Celiac Research and Prometheus Laboratories, Inc.

The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, founded in 1972, is the only society in North America and the largest in the world, dedicated to serving the Pediatric Gastroenterology and nutrition communities. NASPGHAN was established to advance the understanding of the normal development and physiology of diseases of the gastrointestinal tract and liver in infants, children, and adolescents, and to foster the dissemination of this knowledge through scientific meetings, professional education, public education, and interaction with other organizations concerned with Pediatric Gastroenterology and nutrition. Visit our website at http://www.naspghan.org.

The Children's Digestive Health and Nutrition Foundation was established in 1998 by NASPGHAN. CDHNF is the leading physician source of information on pediatric gastrointestinal, liver and nutritional issues. CDHNF is dedicated to improving the care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. In addition to the Celiac Disease education campaign, CDHNF also leads a campaign on pediatric GERD. Additional information on CDHNF and its campaigns can be found at http://www.cdhnf.org.