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HEALTH and NUTRITIONOctober Is Celiac Disease Awareness MonthFACT: More than 1,000,000 Americans have undiagnosed celiac disease.Could you be one of them?
Celiac disease is a genetic intolerance to gluten, a protein found in wheat, rye, and barley. When a person with celiac disease eats these foods, gluten triggers the immune system to attack the lining of the small intestine. This reaction causes inflammation and interferes with the digestion of vitamins, minerals, and other vital nutrients. Left untreated, the disease can cause malnutrition, diabetes, cancer or autoimmune deficiency disorders. The treatment of celiac disease is a lifelong gluten-free diet, which results in remission for most individuals. Celiac disease had been considered to be rare in the United States until recently. Studies now suggest that as many as one in 100 Americans are affected with the disease but the diagnosis rate is only one in 3,600 Americans. Given this gap, there is a strong need for education in order to alleviate unnecessary suffering, reduce medical costs, and improve the quality of life of individuals with celiac disease. The websites highlighted below serve to educate medical providers, health care professionals, and the public about celiac disease in an effort to increase awareness, diagnosis, and management of the disease.
National Institute of Health (NIH), The National Institute of Health is the primary Federal agency for conducting and supporting medical and behavioral research. The site provides celiac disease resource information including links to the National Institute of Diabetes & Digestive & Kidney Disease, National Institute of Arthritis and Musculoskeletal and Skin Diseases, MEDLINEplus, and a clinical trails database. The site is useful for healthcare professionals who can use the research and clinical information to educate themselves and their patients about the disease.
National Institute of Diabetes & Digestive & Kidney Disease (NIDDK), As one of the 27 Institutes and Centers of the NIH, the NIDDK conducts and supports research on many of the most serious diseases affecting public health, and disseminates research findings and health information to the public. The health information on celiac disease, from the Digestive Disease Division, is general and clinical, including a lay-language explanation of how the disease can disrupt the absorption of nutrients in the small intestine. This is an excellent site for health providers and educators interested in current celiac disease research and recent developments.
MEDLINEplus MedlinePlus is a goldmine of good health information from the world's largest medical library, the National Library of Medicine. The information is authoritative, up to date and appropriate for both health professionals and consumers. The comprehensive information on celiac disease includes recent news and research; medical overviews, definitions, specific conditions, diagnosis, symptoms, treatment, management and nutrition; and a listing of celiac disease organizations and newsletters. The site is available in Spanish.
Medscape Medscape offers specialists, primary care physicians, and other health professionals, credible web based integrated medical information and education tools. Sponsored by WebMD, this site requires a simple, one time, free registration. The collection of clinical information and articles on celiac disease are from relevant medical and professional journals and news sources.
Lab Tests Online Lab Tests Online helps the patient and caregiver better understand the many clinical lab tests that are part of routine care, diagnosis and treatment of a broad range of conditions and diseases, including celiac disease. The information on celiac is in three parts: a medical definition, explanation of tests for diagnosis, and treatment. The site is a collaboration of professional societies representing the lab community and adheres to the principles of the Health on the Net Foundation, an international not-for-profit organization that seeks to set guidelines for useful and reliable online medical and health information.
North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPHAN) NASPHAN consists of more than 800 pediatric gastroenterologists whose goal is to improve the health, nutrition and care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. Intended as a guide for children and their families, the educational information on celiac disease includes a brief history, medical explanations, treatments, and long term problems associated with the disease. The site offers daily disease management techniques by providing a list of gluten-free foods, recipes, food companies, support groups and books.
Celiac Disease Center at Columbia University The Celiac Disease Center at Columbia is one of the first medical school supported centers in the United States dedicated to the treatment and study of celiac disease. It is dedicated to providing comprehensive medical care for patients with celiac disease, research into the clinical aspects, epidemiology and the mechanisms of celiac disease, and patient and physician education.
University of Maryland Center for Celiac Research The Center is co-directed by Alessio Fasano, MD, and is engaged in clinical care, diagnostic support, education, and clinical and science research.
Celiac Spruce Association (CSA) CSA is the largest non-profit celiac support group in America with 9,000 members worldwide. Its mission is to help individuals with celiac disease and their families through education, information and research. The website provides celiac disease current events, news and conference information; medical research and related articles; self management techniques for a gluten-free diet; recipes; celiac awareness and advocacy information; and a section called Cel-Kids Networks, especially geared for children and teens with celiac disease. The website is available in a Spanish version.
Gluten Intolerance Group of North America (GIG) GIG is a non-profit organization whose mission is to increase public awareness of gluten intolerance. The consumer oriented website provides current and credible information and research related to celiac disease; and serves to educate, support and improve the quality of life for the gluten free community. The site offers educational material, product information, advocacy involvement, and links to related sites.
Mayo Clinic Owned by the Mayo Foundation for Medical Education and Research located in Minneapolis, this site provides access to the experience and knowledge of the Digestive Center at the Mayo Clinic. Patient information about celiac disease includes the following: medical terms, signs, symptoms, causes, risk factors, screening, diagnosis, complications, treatment and self care.
Celiac.com This site provides important resources and information for people on gluten-free diets due to celiac disease, gluten intolerance, dermatitis herpetiformis, wheat allergy, or other health reasons. The Gluten Free Mall is the mail order section for gluten free food products and cookbooks. There is a FAQ area co-supported by John Hopkins University. In addition, the site features a Message Board center for people on gluten-free diets and a database of medical and academic research articles on celiac disease and gluten intolerance. References: National Institute of Health Consensus Development Conference Statement, Celiac Disease. (June 30, 2004). National Institute of Health. Retrieved September 7, 2004 from http://consensus.nih.gov/cons/118/118celiacPDF.pdf Nelson, D.A. (December 15, 2002). Gluten–Sensitive Enteropathy (Celiac Disease): More Common Than You Think. American Family Physician, 66,12. Retrieved September 7, 2004 from http://www.allergyimmunolinx.com/thearts.cfm?artid=474328&specid=21&ok=yes ©2004 by Claudia Pillow and Annalise Roberts
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