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Sucess Stories


momxyz

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momxyz Contributor

I thought I would start this topic because when people surf to a forum like this they are not only looking for answers and explanations, but also rays of hope, that it is possible to feel better. And its the experience and support found on this forum that is valued by so many!

This is for the newcomers to this forum, but also for those who may be in a tough place, for whom stories of positive outcomes could help keep them going.

The manifestations of Celiac and gluten intolerance are many and varied, but I am inviting everybody to share...

For me, today is exactly day 70 trying to stay gluten free. I came to this forum, looking for info to help my daughter... I didn't think I had a problem with gluten. A few weeks after my daughter went gluten free, I began to wonder if my persistent and very itchy rash - which started last fall and didn't seem to respond to any topicals I used - could be DH.

I did not seek an official diagnosis for this, but my rash had many of the hallmarks of DH... so I went gluten free.

Long story made short: my rash is now subsiding. The itching is almost entirely gone. Onlyl two new blister in the last two weeks and they are already going away. Ironically its the older spots that are taking longer to heal but their redness is now starting to fade. Even if the brown spots left behind take some time to go away, I will be very happy with just no more red!


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ravenwoodglass Mentor

For me the biggest success is I am still alive and in less pain than I ever remember in my entire life. I was very difficult to diagnose and very ill for a very long time. When I was diagnosed I only expected my GI issues to go away and I would have been happy for just that. My last 5 years undiagnosed I was up every night with gut wrenching pain and D in addition to not being able to leave the house during the day without heavy meds to prevent an accident. I was very surprised when within 6 months the horrible oozing burning sores that covered my back, face and spots on my arms and legs were gone, I was able to walk most of the time without falling over, my fibro was a thing of the past as was my migraines. My arthritis went into remission and I was able to use my hands and walk pain free. One of the best things was I was even able to read again, something I cherished throughout my whole life but had given up because I couldn't concentrate long enough to be able to remember anything I had just read long enough to follow even a simple story. The last few years before diagnosis the only thing that kept me alive was my children. If I hadn't had them I might have committed suicide to end the pain. I may never be able to fully regain some of thought processes I lost, I still get easily confused and have a few other issues but they are nothing compared to what I went through prediagnosis. The one thing I haven't recovered from is my distrust of doctors and anger at their unfailing reliance on those blood tests. If just one had suggested I try the diet, just one, life would have been so different for myself and my children. But I have come too far to spend my energy worrying about what might have been. I can now look forward to life and be thankful for what I have achieved healing wise. The diet is difficult at first but it is so worth it and all the trouble when the pain stops and the world begins to be a clearly more beautiful and painfree place to be.

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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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