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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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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
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
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