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Hopeful1950

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Hopeful1950

  1. Hopeful1950
    Oh yes. I would never recommend taking it for an extended period of time. When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after...
  2. Hopeful1950
    Has any doctor suggested taking a round of Dapsone? If you have dermatitis herpetiformis, dapsone will clear it fairly quickly. It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis. Sure enough it worked like a miracle and itch stopped and after 2 months...
  3. Hopeful1950
    I use an app called Spoonful where you can scan labels and it will tell you whether it is safe, questionable (and why) and also something you can substitute. It also makes it easier to see what is on the label. There are some ingredients that I avoid in addition to gluten. You can also search the app by a category. I just searched on "cosmetics and...
  4. Hopeful1950
    I am considering using the Metabolic Meals delivery service. They claim to be 100% gluten free. Has anybody used this service? If so, have you had any reactions? Is the food worth the price? Thanks, any input is appreciated
  5. Hopeful1950
    Oh no! I feel your pain. If I may ask, where is the rash mostly? Mine has always been worse on my lower legs and forearms than anywhere else. There is a wet wrap technique that is used for eczema that can provide relief if the devil rash is on extremities. I have strips of cotton t-shirt material that I saturate with cold water, wring so they are not...
  6. Hopeful1950
    I have found gluten free oats to be a hit or miss. Yep, just plain epsom salts. Some of them have added stuff so read the package to make sure. I get mine at Walgreens or the grocery store. I just add about 3/4 cup to my bath. J&J baby line might be a good option, but if it smells perfumy I would steer clear. For me, natural doesn’t m...
  7. Hopeful1950
    Hi, this is just my experience: 1. Avoid anything with oats/oatmeal in it 2. The product you have shared would make my skin worse when I am actively rashy. My skin can’t handle anything when I am blistering. 3. I use plain epsom salts. No weird fragrances or herbs etc. 4. Occasionally I can get away with J&J baby shampoo to get s...
  8. Hopeful1950
    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...
  9. Hopeful1950
    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...
  10. Hopeful1950
    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...
  11. Hopeful1950
    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...
  12. Hopeful1950
    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...
  13. Hopeful1950
    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...
  14. Hopeful1950
    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…
  15. Hopeful1950
    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...
  16. Hopeful1950
    Did they give you anything for the Covid that might be working on the DH?
  17. Hopeful1950
    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.
  18. Hopeful1950
    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.
  19. Hopeful1950
    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.
  20. Hopeful1950
    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...
  21. Hopeful1950
    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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