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The Gurgles Are Back...:0(


Judy3

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Judy3 Contributor

Wow what an experience the last month has been. Started getting what felt like a cold in late August and just dealt with it no biggie. Labor Day weekend, had the worst bloody nose ever (out in public of course for added drama) and when I saw my ENT doctor on Tuesday after they asked how long I'd been stuffed up.. just a couple weeks I said. Well I had a sinus infection and they gave me antibiotics.. Boom, 4 days into them I'm getting Celiac symptoms and Fibromyalgia symptoms (that I haven't had in a few years) so I stopped them after day 5. Whew thought I headed that one off at the pass.. Not so! Two weeks later I am scheduled for a colonoscopy and they give me two, yes two bottles of the 'stuff' to drink. The pharmacist was concerned but said 'good luck with that'.. So being the obedient patient that I am, I drink the two bottles of stuff (ackkk may I say) and went in the next afternoon for my test. That was a Friday. Ever since then I have had the most sickening diarrhea, stomach pain, abdominal cramps and low grade fever that comes back at night. Talked to nurses all week last week, called the manufacturer of said 'stuff' to be sure it was gluten free and it is but they said and I quote "NO ONE SHOULD DRINK TWO GALLONS OF THAT TYPE" So then I was terribly pissed and demanded to talk to the doctor and he finally called me back on Friday morning.. A combination of the antibiotics killing my stomach and then too much of the 'wrong' medicine (there are two kinds from the same manufacturer and they gave me the 'powerwash' kind) has destroyed my GI track... yay after 11 months gluten free and so much progress the GI doctor's office put me back to square one! Grrr so now I'm taking probiotics and eating yogurt and progressing back to my high fiber diet. Why am I telling you all this? So that you all can BEWARE of prescription drugs ESPECIALLY if they are generic. Have your pharmacist double or triple check if need be because this just isn't right. So yes the gurgle is back!! Sigh


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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.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • 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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      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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