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PCP was convinced but suggested biopsy anyway


Vegasgirl2007

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Vegasgirl2007 Newbie

My PCP ran a CBC, thyroid test, and food allergy panel in addition to a celiac panel consisting of Gliadin AB, Deamid. IgG, Gliadin AB, Deamid. IgA, TTG IgG, and TTG IgA. Everything was completely normal except the celiac panel (he said he was truly shocked at the fact that the numbers not only indicated positive results but all were actually off the charts with both IgA tests over 10x higher than the minimum positive thresholds.) He said that really the only reason to go through with the biopsy was to set a baseline for the future, but he did give a referral to a gastroenterologist. I decided to try to stop eating gluten for a few days to see if I noticed ANY difference because I absolutely love every gluten filled creation you can come up with (ok a bit of an exaggeration because I am a picky eater, but I truly felt that I would starve without it!). I was skeptical but after 3 days, the headache that I have had for months went away and I could feel the muscles in my back and neck trying to start to relax-even muscle relaxers for a month barely achieved that. After about 2 weeks, the itchy, blistering rash on my knees and elbows (which I had on and off, mostly on depending on diet at the time, for about 10 years) completely stopped itching and has almost completely gone away. The gastroenterologist seemed to think that I was faking it because it is a "fad", he actually hadn't seen the results of the bloodwork and kind of changed his attitude towards me once he did. I scheduled the biopsy for next Wednesday, but that will put me at about 3.5 weeks gluten free. I actually feel somewhat better although there is still a long way to go, but I am concerned that I may have gone off gluten for too long, especially given his attitude towards me and what I have read about false negatives due to sampling techniques during biopsies. Is it worth eating gluten for the next week or is it too late? I have a doctor's note for work/meeting meals already and even though I was extremely doubtful, I do feel better.


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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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      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/ 
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      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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