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Hopeful1950

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Hopeful1950 last won the day on September 25 2022

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  • Di2011

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  • Gender
    Female
  • Interests
    Music, beading, reading
  • Location
    New Mexico

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  1. I am so sorry that you are going through this. To put it bluntly dermatitis herpetiformis is a b%$@#. Do not stop what you are doing. It can take a long time for it to completely clear up if ever :(. This is because some of the antibodies that are deposited in your skin after gluten ingestion can remain in you skin for a long long time before they blister...
  2. Hi, my dermatitis herpetiformis shows up with the tiniest accidental gluten exposure. Tummy stuff not so much after over 10 years strictly gluten-free. my dermatitis herpetiformis can also flare from trauma to my skin awakening antibodies that have been lying dormant. A paper cut, a bruise, scratchy clothes, sun exposure… apparently after exposure a...
  3. I have heard about that process and I have also heard about some kind of "ancient wheat" that supposedly is safe for celiacs. As someone who is super sensitive and after 10+ years of struggling to get DH under control I wouldn't risk it for sure! I am okay to do without. Xanthan gum, inulin, chicory root, guar gum and the myriad other mystery ingredients...
  4. Looking at the ingredients in that flour (see screenshot)I see some things that might be a problem: xanthan gum and niacinamide. I personally can't tolerate xanthan gum, and many gluten-free foods contain it. Niacinamide could cause flushing if you are sensitive to it. I am, and this flour would make me miserable. Out of curiosity I went to their...
  5. I don't know if any of your medical professionals have told you or not, but when DH antibodies are deposited in your skin, some of them blister fairly soon after gluten exposure, BUT some of them just sort of hang around waiting to blister. Eventually they are absorbed (after approx 10 years) if they don't blister. It is so frustrating because you can be...
  6. I suffered with up to 70% of my bod blistered, burning, itching and, like you, finally found a doc that would listen. In my experience, no place on the body is exempt from DH. I think its favorite breakout place is different for each person. I am so glad you found a solution. I can't imagine how much you have suffered with the devil DH in such a...
  7. Your mention of 10 years jumped out at me…I recall reading somewhere (I wish I could provide a link or a cite, but can’t find it) that DH goes into remission in some people after 10 years or so. Maybe you are one of these very lucky folks…
  8. I suffered for 10 years with DH before finally being diagnosed. Ironically people with DH often do not test positive on the serology tests and also may not have the classic celiac damage in their small intestine. I was told I was "crazy" just stop scratching...and on and on. Finally a co-worker looked at my rash and said "my husband has that...it is DH...
  9. Did they give you anything for the Covid that might be working on the DH?
  10. Years ago, even before I found out my rash was DH I bought a thing called "The Itch Stopper". It works by applying heat to the itchy spot...now I know why! I have always gotten some relief from a hot bath also. Thanks for sharing this. Finding relief for the unbearable itching is a constant quest for folks.
  11. Just a quick thought. When you said you could touch cat treats and then wash hands and be fine... Are you touching the cat? I had to eliminate gluten from my pets diet, because they eat the food or treat, and then they lick their fur and then I would pet them. Not a problem unless I was not thinking and then touched my eyes or mouth afterward.
  12. It can appear almost anywhere. I had it on my upper arms, in my hair, ankles to knees, upper back, back of the neck, down my spine, lower back, forearms, elbows, but not on my face or front of my upper body.
  13. Hi, I have DH. I went undiagnosed for 8 years and it was horrible. I am 9 years gluten-free, very strict, and I still break out here and there. In my experience anything with iodine in any quantity and with any regularity can cause it. Also povidone in medications. It is my understanding that DH can stay in your skin for up to 10 years “dormant” (fo...
  14. It looks like the other responses pretty much say it all. Before docs realized that DH was from celiacs, they just knew that Dapsone controlled it and didn't really know why. But in more recent years after they realized that the problem was occurring in the gut from eating gluten, they give Dapsone to control the uncomfortable symptoms along with a strict...
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