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"Super Sensitive" Celiacs.....
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478 posts in this topic

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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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.

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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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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
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