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I Need Some Help


addymommy24

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addymommy24 Newbie

Ok i have been dealing with this crazy breakouts for about 1year and half. None of that doctors can figure out whats causeing md to break out. I have figured out that im dealing with dermatitis herpetiformis, i have stop eatting stuff with gluten and the itching and the burning and the blistering has gone down. Im still having smaller out breaks but i was having break outs all over my body. Its really hard going gluten free. I need help tring to find a doctor or type of docter to contact to get diagnosis or if theres some kind of test ive been diagnosed. With 5 different diseases and i took meds and no luck. Also i saw that some people also dont eat or drink milk products when they r on a gluten free diet. Is that important not to eat or drink milk products? Im so frusterated. Im itchy all the time and my face is horridle looking sometimes because the blisters turn in to scabs and than im scared to go into public because of the stares. I have been gluten free for about two weeks and it has helped alot but if i mess up and eat something with gluten my skin goes crazy. Help please


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squirmingitch Veteran

You need to read this entire thread all the way through & read the links contained in it also. That will tell you what you are asking & about the tests & about why the tests won't work for you now because you are already gluten free.

https://www.celiac.com/forums/topic/105888-newbie-feeling-desperate-how-long-before-i-see-improvement/

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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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