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Any Research Being Done?


EddieJP125

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EddieJP125 Explorer

is there any progress with helping Celiacs in finding a cure, or this pill that ppl would say that they would pay for if it were true?...

b/c they have cured many things in the past and can prevent things from happening too...wat about our conditions?...

does anybody know?


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tarnalberry Community Regular

yes, there is some research, but much of it is being done overseas. there's not a lot of research on it - 'cause there's not a lot of money. but if you've got a few million to donate to the research cause... :lol: it doesn't help that there isn't a huge push to find a pill or something, because we already have a "cure" - the gluten-free diet. (it "cures" the villious atrophy, which is the disease itself. curing the genetic cause of the reaction to gluten, however, will require a lot more work in gene therapy.)

MySuicidalTurtle Enthusiast

At my last support group meeting a woman was talking about research being done. . .I don't recall it being overseas. . .but it was more abut vaccinations to help lessen reactions. . I think. . .and work to a cure.

celiac3270 Collaborator

Oooooh.....lessen reactions......that sounds GREAT! I'd be leary of a "miracle pill" that allowed the ingestion of wheat, but I think a pill to lessen reactions would be great!......especially since some people get so bad with gluten that they need to go to the hospital..........that's terrific, thanks for sharing, Kristina

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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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