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Cd, Hepatitis And Immunosuppresants


umahal

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umahal Newbie

Dear all

I am a new member and thought I would write about my current experiences, and see if any of you have any feedback you can give me. I am 34 and have been questioning whether I have celiac disease for over a year now. Ever since I was a teenager I have suffered with IBS and interestingly, some people with IBS have underlying celiac disease. However, more intriguingly is my family history. My father has diagnosed celiac disease and he only found out about 10 years ago when he developed DH. He appears to be fine on a GFD and has had no problems. I would bet my house that my Grandma has celiac disease as she shows all the signs, ie: bowel problems, hopeless addiction to bread, osteoporosis and anemia. However, she is 90 and won


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seeking-wholeness Explorer

umahal,

Welcome to the board!

Your personal and family histories certainly make ME suspect that you have celiac disease! All the pieces fit together so neatly, except for the negative blood work! It's true that your being on a gluten-free or nearly-gluten-free diet may have skewed the results, and I suspect the immunosuppressants may have contributed, as well.

I just found this article while I was browsing the site this evening. It's rather technical, and it pertains to patients with refractory celiac disease (which does not respond to the gluten-free diet) rather than regular celiac disease, but this part caught my eye: "Treatment consisted of azathioprine combined with prednisone for 1 year, which was tapered and, if possible, stopped. Results: Clinical improvement was seen in nearly all patients.... Eight of 10 RCD type I patients responded histologically, and complete normalization of villi was seen in four patients." From this I conclude that azathioprine may lessen the effects of celiac disease, which may very well translate to fewer antibodies in the bloodstream.

If you are not interested in attempting a gluten challenge at this point, have a look at the website for Open Original Shared Link. This lab can perform stool testing for celiac disease-related antibodies that is reportedly MORE sensitive than bloodwork AND able to detect celiac disease for a longer time after a patient goes gluten-free. They can even do a gene test!

I hope you find this information helpful, and I wish you luck as you pursue a conclusive diagnosis!

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
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