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Hopeful1950

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Everything posted by Hopeful1950

  1. Hopeful1950
    Oh, so sorry...regarding lag time: For me it is somewhere between 32 and 48 hours so sometimes it is hard for me to figure out where I got exposed to gluten. When I have eaten something with iodized salt (or iodine) the reaction is much sooner.
  2. Hopeful1950
    With a strict gluten-free diet the rash should eventually get much better. It can take up to two years to really see lasting remission, but some people see relief in less time. The antibodies remain in your skin for up to 10 years, so flares can happen unexpectedly for a long time, but they should get less and less intense. It all depends on the person. Be...
  3. Hopeful1950
    Oh...the butt rash. The most miserable of all! With a gluten-free diet the rash should eventually get much better. It can take up to two years to really see lasting remission, but some folks see relief in less time. It all depends on the person. If you think you have DH, be sure to avoid iodine as it makes the rash worse. The antibodies remain in...
  4. Hopeful1950
    Here's what I've found out: 1) It can take up to ten years for the antibodies to completely leave your skin. Some people are more fortunate and find relief in 6 months, a year, or two years. I have a friend with DH who still flares after being gluten free for 5 years. 2) When you ingest gluten you are taking the risk that new antibodies are being...
  5. Hopeful1950

    ARCHIVED New Here

    Hopeful1950 replied to drgoogle's topic in Dermatitis Herpetiformis

    Wow!!! You could be telling the story of the last 7 years of my life. I wanted to respond when I read your post yesterday, but had to calm down first. Why do docs play the "psychosomatic card" or tell you that it is "all in your head", just stop scratching. I have been patted on the head, told to "just stop scratching" and sent home with one cream or...
  6. Hopeful1950
    Well...I can tell you that the rash can act in many different ways! Was undiagnosed for 7 years and have had groups of watery blisters that end up looking like an oozy road rash. I have had hive like things. Then healing areas will blister on the edges and underneath and crack and peel and ooze. Blisters appear at the edges of old lesions that have healed...
  7. Hopeful1950
    I did the blood tests and they came back negative as is often the case with DH. I got a skin biopsy and it was positive. I stopped there because I read in Dr. Green's book that a positive skin biopsy is a diagnosis of celiac and endoscopy is not necessary. If you are low on cash or your insurance doesn't pay for the endoscopy, the skin biopsy might be...
  8. Hopeful1950
    I think Motrin contains an NSAID. It is my understanding that NSAIDs can aggravate DH.
  9. Hopeful1950
    Hi Richard. I was hoping you would reply. I thought you had taken the Dapsone, but couldn't find a post where you talked about it. I have decided that it is well worth the risk. I am suffering so much with this rash. I know it will take up to two years for the antibodies to clear my skin and the 7 years I have spent in shame, pain, and itching is...
  10. Hopeful1950
    Doup, thanks for replying. I am really torn for the reasons you have described. I appreciate your input.
  11. Hopeful1950
    I have had the DH rash for 7 years and was just diagnosed about 10 weeks ago. I have tried everything for the itching. The Sensitive Sarna works very well, but I am allergic to it and breakout in thousands of tiny blisters when I use it. I have found another remedy that works pretty well "Bandaid Hurt-Free Antiseptic Wash". It contains lidocaine which...
  12. Hopeful1950
    I have a diagnosis of DH and have been gluten free for 10 weeks now and although it is slow progress, I am feeling relief from the bone deep itching that I used to have. The rash is taking longer to heal, but thanks to this forum I know that I have to be patient and stick strictly to the diet. I also am avoiding iodine in salt and supplements and gluten...
  13. Hopeful1950
    Thanks everyone for the info. I really think I'm going to go ahead and try going gluten free. I am fortunate to have a great insurance plan through my work so went ahead and got the topical Dapsone...crossing my fingers. I'm terrified to take the oral. In general how long does it take to see any changes after going gluten free? In my opinion, if I get...
  14. Hopeful1950
    I'd like to respond to the question about whether a dermatologist can "not get it right". You bet. In my experience of what appears to be a DH rash I have been told it was "stress eczema", that I was a "picker", and most recently I have given a medicine for bi-polar disorder! I consulted a psychiatrist at that point and he sent me to an allergist who is...
  15. Hopeful1950
    Hello Everybody, It's 4:20 am my time and as usual I am awake itching like fire. I am in the process of testing for DH and was wondering if anyone has used topical dapsone along with gluten free diet. The topical product has been successful with acne. I have decided that if, in fact, the diagnosis is DH I'll go for it and take the Dapsone. I have suffered...
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