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Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry to learn about your daughter, but glad that she has found success with dexilant. In fact, @jwicks also posted about a similar outcome with dexilant.
I'd also like to mention that the Gastroenterology & GI Surgery Page on Connect, has some very informative videos by Mayo Clinic experts on a celiac disease and IBD (Crohn's and ulcerative colitis): https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
So what are the next steps for your daughter, @sbch?
Replies to "Welcome to Connect, @sbch. Thank you so much for sharing some great insights and information. Sorry..."
@sbch – I agree with you on how you are classifying this. My other child is not celiac but can have very little gluten. Otherwise, she will have stomach cramps and throw up. I tell people it’s crohn’s of the stomach. Seems to be the only way others understand. I almost look forward to my son aging out of pediatric gi. We live in a big city but the pediatric gi’s know very little about cg.
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Next steps: as far as we can tell she will stay on dexilant, never touch alcohol and rarely caffeine, and just keep eating. She began as a late pediatric case and is now transitioning past pediatric so we can expect changes at some point, but she is still with the same doctor, a pediatric gastroenterologist who seems to know more about this and related conditions that most do.