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Hopeful1950

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Everything posted by Hopeful1950

  1. Hopeful1950
    Dermatologists (3) were stumped. Called it "stress eczema". One biopsied, but was not looking for DH. Finally ended up at an allergist (after 8 years of suffering) and he tested me to see if I had food or contact allergies. All tests negative. He thought it looked like DH, so he ordered a blood test for celiac. It was negative which is not unusual for...
  2. Hopeful1950
    Hi, your pictures look the same as my DH rash. Does it itch alot? For most people, the DH rash is intensely itchy.
  3. Hopeful1950
    Kurly, Could the contrast have contained iodine? Many of them do. Iodine really makes the antibodies in the skin blossom. My DH was minor until I took a weekly medicine that was full of iodine and then it went crazy and spread all over my body. Unfortunately, stopping the medicine was "closing the barn door after the cows got out". The DH never...
  4. Hopeful1950
    Yes, definitely yes I have scratched until I bleed. My scabbed lesions would blister around the edges and drive me crazy with the itching. I have sat in the bathtub with the water running red from open itchy lesions crying my eyes out. Have you been diagnosed with DH? If so, keep in mind that it takes quite awhile on the diet to see results because...
  5. 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...
  6. Hopeful1950
    I have problems with Neosporin. Regular and also the one with Pramoxin (topical pain reliever) in it. I have heard that many people are sensitive to the neomycin. It makes my lesions more itchy. I use Polysporin instead and avoid all products with Pramoxine. The Polysporin is an ointment so it works to keep the lesion moist.
  7. Hopeful1950
    Eatmeat4good: AMEN!!! None of us would recommend not trying to find a doc who can help, but you finally have to take the bull by the horns and take care of yourself. If a person has suffered for years and is not getting answers what harm can a gluten free diet do? It certainly can't hurt! If I had just been more proactive I would have saved myself...
  8. Hopeful1950
    I gave up on dermatologists after going to three of them who just told me "don't scratch" and "apply this cream". One of them biopsied right in the middle of a lesion (wrong!). I knew that it was something I was eating, so I went to an allergist. He ordered the celiac panel (blood test) and did extensive allergy testing. He suspected celiac due to the...
  9. Hopeful1950
    I have DH and have experienced something similar. First: the itching. Almost feels like it is coming from the inside. Second: the little bumps. If it is a large patch of skin that is itching it can almost feel like an orange peel. At this stage, if I catch it before I have scratched too much, I can look with a magnifying glass and see little water blisters...
  10. Hopeful1950
    Thank you so much for the update. I'm glad you finally got a definitive diagnosis and treatment that is helping you. I do have a question...can you give some insight on how your rash is different than DH? Did it improve at all on a gluten free diet? I'll bet it is wonderful not to worry about cross contamination and all that stuff!
  11. Hopeful1950
    I think it is the luck of the draw finding a dermatologist that is experienced with DH. I saw three of the top derms in my city and none of them snapped. In desperation I ended up at a psychiatrist who sent me to a buddy of his, who is an allergist, for help. The allergy doc figured it out. I also think it has to do with the fact that they spend maybe...
  12. Hopeful1950

    ARCHIVED Is This?

    Hopeful1950 replied to jcolding's topic in Dermatitis Herpetiformis

    Regarding watery blisters: mine rarely are big enough to see with the naked eye. What happens is that a patch of skin starts itching and if I catch it soon enough I can see the little water-filled blisters with a magnifying glass. They are fragile and they break right away from my clothes rubbing or even very light scratching. Many of the images you'll...
  13. Hopeful1950
    OMG! I can't even imagine how much you suffered! I went undiagnosed for 8 years with this damn itchy rash and stopped riding 6 years ago due to the misery I was going through on my motorcycle. I live in the desert southwest and the hotter I got the itchier I got! I was building up antibodies for so long that it is taking a long time for me to heal...can...
  14. Hopeful1950
    Ohhh, don't get me started on dermatologists At least your derm didn't call you "crazy" for example: "stress excema" "neurotic excoriations' or that you are a "picker". From what you say it does sound like your symptoms were minimized and dismissed. Don't give up until you find out exactly what it is. I suffered for almost 8 years because I kept...
  15. Hopeful1950
    I recently had a breakout. Just a few blisters in a couple of places, but one alarming new place. Has anyone ever gotten a breakout on their genital area? I went to the gynecologist and she ruled out everything else and said the thinks it is probably DH. This is really disturbing, not to mention extremely uncomfotable. Why did I think...
  16. Hopeful1950

    ARCHIVED Dapsone Fail

    Hopeful1950 replied to kmag's topic in Dermatitis Herpetiformis

    It sounds like you had a bad reaction to the Dapsone. Some people get a rash from it. How ironic, you are trying to treat a rash and you get one instead. It is my understanding that if a DH patient can tolerate Dapsone, relief happens in 2 or 3 days. That was my experience. It took about three days, the itching was mostly gone and I started healing...
  17. Hopeful1950
    Mine started with what appeared to be a few bug bites on my ankles. But they wouldn't stop itching and wouldn't heal. It kicked into full gear when I started taking Actonel (osteoporosis med). It spread all up and down my shins, all over my ankles, arms from wrist to shoulder (on the outside), back of the neck, upper back, lower back and the cleavage...
  18. Hopeful1950
    Mayo bugs my rash because it is made with eggs which are high in iodine. If I ate tuna + mayo I would really blister!
  19. Hopeful1950
    Hi, I tried Dapsone (25mg/day) and got relief from the intense itching of my rash in about three days and the sores started to heal because I wasn't scratching them. I was so excited! I was still getting a few new little blisters so the doc started gradually increasing the dose until I was up to 100mg per day. At that dose the rash was under control...
  20. Hopeful1950
    rdunbar Was looking at the list of stuff you eat and I think I see a problem: I see at least one food very rich in iodine, kale. Even after avoiding gluten, the antibodies for DH can remain in your skin for several years and iodine can cause them to erupt. I was having a terrible time until I identified the high iodine foods I was eating. Egg yolks...
  21. Hopeful1950
    You might be on to something...my daughter breaks out with all the flavored, powdered, coffee-mate type creamers. She also breaks out with the coffee drinks dispensed by the machines at convenience stores. Years ago, before my DH rash, I stopped using fake creamers because I broke out with them. I use only organic Half and Half to make my cappuccino and...
  22. Hopeful1950
    Enterolab does a stool test. You order the supplies on-line then mail your sample to them and they send you a report with the results. It is a little expensive, but I decided it was worth it. I did a package where they do a gene test, a test for gluten sensitivity and a test for casein sensitivity. Some insurance companies will pay for this, mine did not...
  23. Hopeful1950
    Don't think of the allergist as a huge waste of time. I went to three dermatologists and they all blew me off as a "neurotic picker". My gut told me that the blistering was caused by something I was ingesting, so I then consulted an allergist who tested me for all the common food allergies plus he tested for other things that I commonly eat. He also tested...
  24. Hopeful1950
    I've been gluten free for almost 10 months and here's my experience: When I initially went gluten free, it seems like I almost "de-toxed" and the DH got worse before it got any better. I am still fighting it even though I am being very careful. I did discover some sources of iodine that were getting me and have rectified that situation and now I seem to...
  25. Hopeful1950
    I haven't taken any of these, but regarding nicotinamide...if it is niacin a major side effect is major hot flushes. I have to be careful how much niacin is in my vitamins because it causes such bad flushes. Interesting about how it blocks the inflammatory effects of iodides... There is a thread on the forum where a woman commented that her son cannot...
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