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"Super Sensitive" Celiacs.....


jerseyangel

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GottaSki Mentor

Yep. No one told us when we were younger how tough we would have to be, or we would have trained harder (although I got some pretty good training along the way -- and one kind person who took me under her wing because she understood :wub: ) Funny how those people stand out in our lives -- that one person, and my 8th grade teacher probably saved my life.

The only people who understand celiacs are celiacs. I hope your path gets easier and your coworkers more understanding. May you find someone to take your side, to hold your hand and guide you through the celiac doldrums. I would if I were there, because I KNOW! :)

Well said Shroomie!!!


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dilettantesteph Collaborator

When I first began the forum we thought I might have got ideas from the Super=sensitives and "copied them". Now I believe that I found my reactions, because you helped to define them. I was super sensitive all along and knowing it could happen didn't change that.

My symptoms 6 months later are more undeniable than ever. I keep marveling that I really am acting like a celiac. I keep wondering how nobody around me thinks it seems like too big of deal physically. Just keep doing your job until you drop dead? Really.. "It is just my choice to follow the diet?! The stress is really hard to take lately. Even with physical improvement I long for markers of progress and someone who will ask how it is going and truly want to know. Someone who will counsel me maybe I shouldn't eat something. Someone who does not eat it infront of me.

Sorry, I didn't make it to the end of the thread, yet and must sign off.

It is hard coping with celiac disease, and even more so when you find out that you are super sensitive. There are few who understand and many who tell you that you couldn't possibly be reacting to what you are reacting too. I am lucky to have supportive doctors and to have found other super sensitive celiacs who have been very supportive. I would love to pay it forward and I offer you any help you need.

  • 1 month later...
teruff Newbie

Jerseygirl I had the same problem! I've been dealing with celiac disease for about 6 years and I went through the same thing. I most definitely have become more sensitive through the process but my anxiety has gone down dramatically. The only time it ever flares up is if I eat gluten. As with the symptoms I also have noticed that they aren't as severe (unless I eat large amounts of gluten) but they do drag. I will feel tired for a longer period of time and be bloated for longer :angry: . It also KILLS my work outs, I sweat about 50% more and it is so much harder to get through.

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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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