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Celiac Disease Educational Campaign - New Physician Materials

By Kelly Rohlfs

Celiac.com 09/29/2004 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) 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 percent). 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.

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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.

They have put together a comprehensive slide set (Acrobat and PowerPoint) available on their website http://www.celiacfacts.org. Although somewhat specific for pediatricians and pediatric gastroenterologists, the material is applicable to all stages and ages of celiac disease. Topics include: Definition, Associated Conditions, Clinical Manifestations and Complications, Diagnosis, Epidemiology, Pathogenesis, Prevention, and Treatment.

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I have 2 copies of DQ9. One from each parent.

Obviously from the outside it's difficult to comment, but if I were you I'd leave allergies for now and pursue definitive celiac testing via your doctor and preferably a gastroenterologist. They're the first port of call for digestion issues. If you do wind up being celiac it's possible that other allergies or intolerances would resolve or improve in any case once you've been on the diet for awhile. That's been my experience. Ps note that wheat allergy is completely different and unrelated to celiac or non celiac gluten sensitivity.

Thank you ps, it may be better if the thread title was changed as we now have two 'overwhelmed' topics. If it were 'Bile ducts and celiac?' then it may attract more users with direct experience?

Hello and welcome Maybe? From reading others accounts there's a big variation in how quickly gluten antibodies respond to the gluten diet. I did similar to you and my doctor said that 1 week back on should be enough to show up in a test, but he didn't know what he was talking about sadly... The 2 week figure refers to the endoscopy, for blood testing 8-12 weeks on gluten is more normal. Basically if it comes back positive fine you have your answer. If its negative it may be a false negative due to your going gluten free beforehand. If you want to pursue a diagnosis then yes. Don't go off gluten again until you confirm that all testing is complete. Keep a journal noting any symptoms, that may be useful to you later. More info here: There's some good info in the site faq: https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/ I know how you feel! Partway through my gluten challenge I knew that too results notwithstanding. Fwiw I think you've found your answer. Good luck!

Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work. While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered. There are some exceptions, but those are not common.