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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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
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    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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