In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease, and since then it has become an invaluable resource to people worldwide who seek information about celiac disease and the gluten-free diet.
In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore! which was also another Internet first—it was the first gluten-free food site to offer a shopping cart-style interface, and the ability for people to order gluten-free products manufactured by many different companies at a single Web site.
I am also co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
Celiac.com 03/29/2005 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (CD) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors® Market Research Panel.
The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy.
Regarding the diagnosis of CD, only 16% of respondents chose the most appropriate first line serological screening test for CD, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet.
Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada.
It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained, added Dr. Dirks.
In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease.
However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions.
The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended.
The survey indicates the need to provide medical professionals with as much information as possible about CD. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert® messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail.
Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness, said Kirk Loevner, Epocrates President and CEO.
The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nations largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others.
About NASPGHAN and CDHNF
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 www.naspghan.org.
The Childrens 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 pediatric GERD education campaign, CDHNF also leads a campaign on Celiac Disease. Additional information on CDHNF and its campaigns can be found at www.cdhnf.org.
About Epocrates, Inc.
San Mateo, CA-based Epocrates is transforming the practice of medicine by providing innovative clinical tools at the point of care and deploying leading-edge technologies that enable communication. The company has built a clinical network connecting more than 1 in 4 U.S. physicians, students at every U.S. medical school and hundreds of thousands of other allied healthcare professionals with other healthcare stakeholders. Epocrates products have shown a positive impact on patient safety, health care efficiency and patient satisfaction.