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Transitioning To An Adult Gi


ryebaby0

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ryebaby0 Enthusiast

My son was dx almost 10 years ago, and has been under the care of the same group (and basically the same doctor) at Children's Pittsburgh all that time. He has an additional dx that necessitates immunosuppressive meds and monitoring. Anyway, son wants to stop driving 6.5 hrs round trip for the checkups twice a year (it will be particularly hard to schedule now that he is in college) and I get that eventually we'll need to find an adult GI, anyway.

Asked the peds GI and he really only wanted to recommend another Pgh doc, which hardly solves the problems. So how do I find another doctor? I've looked at the major practices in my area, and none have anyone who specifically is interested in celiac. We are not far from Hershey, but he was seen there at the very beginning and we are profoundly not-impressed with their care. Can you interview doctors? Schedule a visit to see what they know? The peds gi is a momma's security blanket and I'm hanging onnnnnnnnn :)

  • 4 weeks later...

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mamaupupup Contributor

:) I would do the same as you do :)

Try calling the Celiac Disease Foundation for a referral! Yes, interview doctors! I even offer to pay out of pocket just because I want really good care...

It's exciting that he is taking his medical care seriously, so that is great news!

Good luck!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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