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itchy

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Everything posted by itchy

  1. itchy
    I disagree a little about scratching. Clearly it makes the itch or sting feel better or people wouldn't do it, although ultimately it may make the problem worse. Keeping the lesions moist with creams may help a lot. Notice that for many of us DH is often worse at certain times of the day, usually evenings, so that may help you concentrate your efforts at...
  2. itchy
    Yes, I would call them 'active' lesions. They are certainly 'active' as evidenced by the red inflammation. And lesion is a word with a broad definition that basically means diseased area or injury. To me your lesions look like DH, and I would expect if they get worse or you scratch harder they will become 'excorciated' and become bleeding sores. In mine...
  3. itchy
    I would consider reporting this guy to the org that oversees physicians where you live. Being careful of libel, of course. Unfortunately many of us have encountered physicians who aren't much better.
  4. itchy
    Thank goodness for the internet that helps us take responsibility for our own health. I'm not sure what the problem is with MD's who refuse to recognise DH. Perhaps they are convinced that we are part of what they consider to be a gluten-free 'fad' around the English speaking world. I think they often see 'wheat intolerance' as an 'alternative medicine' diagnosis...
  5. itchy
    You refer to 'pustules'. I know there are people who have a variety of lesions, but for my part I have never had anything that I would call a pustule, which suggests 'puss'. My lesions have always had blood or clear bloody fluid. In the 'pre-DH' or 'post-DH' stage (if there is such a thing), the lesions seem to be without fluid and just involve...
  6. itchy
    Mikyraso First off, it sounds like you might still be eating too much gluten. Many people with Dermatitus Herpetiformis don't have as bad gastro intestinal symptoms as other coeliacs, so find it easier to control GI problems with reduced gluten. But unless your gluten intake is very near zero, you will continue to have DH. That was my experience. So getting...
  7. itchy
    Then we're agreed. I respect the vast amount of knowledge you bring to this conversation.
  8. itchy
    I don't blame you for being confused, but I don't think there are any easy answers. Because DH is an auto immune disease it seems to be partly subject to circumstances in our body that we may not understand. I think most times one will react within a short time or a few hours to a glutening, but there are exceptions. And I've had 'reversals' that didn...
  9. itchy
    Eatmeatforgood: If you read my comments you will understand that they don't contradict the quotes that you posted. Note the use of 'some'in the quote.
  10. itchy
    Squirmingitch, please go back and reread the thread. I did not at any point suggest people shouldn't reduce their iodine if that's what works for them. However I object to the constant statements by some that iodine reduction is absolutely necessary to deal with DH. It's not. Surely the experience of most people here is that 'experts' don't have...
  11. itchy
    Squimingitch, there have been a number of people who have stated they didn't associate iodine with any effect on the DH. Because a number of vocal people say it is so, or even various studies identifying a statistical association doesn't make it so for every individual. Low iodine diets are a risk for some people. Furthermore, I am proof that DH can be...
  12. itchy

    ARCHIVED New To Dh

    itchy replied to tetleyt's topic in Dermatitis Herpetiformis

    All good advice from Squirmingitch, except re iodine, which we disagree about. I have never been able to detect an effect from iodine, and I choose not to mess with iodine in my diet due to frequency of thyroid diseases in my family. You will get better if you concentrate on eliminating gluten. I think people should experiment with iodine limits, don't assume...
  13. itchy
    BTW, some of the MD's I encountered were so egotistical and cynical that you couldn't shame them by giving them cut and dried evidence, once they've made up their minds. I'd save your energy for something more likely to yield rewards.
  14. itchy
    I agree with the others, it certainly looks like DH! In my opinion, unless you have some overpowering need (perhaps legal) for a formal diagnosis, forget the need for confirmation by doctors. So far, four of the five doctors I've used were completely lacking competence (well really most of them were aggressively unhelpful, even antagonistic to the idea...
  15. itchy
    Kellbeth, it certainly is plausible that it is DH, especially considering your gastrointestinal symptoms. That said, it isn't as severe or stereotypical as my rash was. Have you compared your rash with the many photos online? Your rash appears to be intensely itchy, bilaterally symetrical, found often on elbows and and limbs, reddish. Those are all characteristics...
  16. itchy
    I've never been able to detect any correlation between iodine in my diet and my DH. Perhaps it is there, but not so great an effect that it makes itself evident. I think there is a lot of variation between people, so making the assumptions one way or the other without experimenting a little is probably not a good idea.
  17. itchy
    You are right about the testing. Most of the active posters here have had the experience of not being diagnosed by the tests used. When your doctor says you may have 'non=coeliac gluten intolerance", he is probably refusing to acknowledge that his tests don't detect your illness. From your general symptoms you certainly sound coeliac to me, which means...
  18. itchy
    Bubblesandbunnies: Having worked in a food bank in a major city and having a low income myself, I know what a struggle it is for disabled people on benefits to put food on the table. Doubly so if you don't have good mobility and can't store bulk food. People on extremely low incomes rarely have the cash in hand to take advantage of bulk deals, so it is hard...
  19. itchy
    I don't think two weeks is anywhere long enough on gluten free before trying other food reductions. DH goes away very slowly for many people. I was aware of improvements after a couple of weeks, but these were VERY small. And bear in mind that I had been mostly gluten free for 12 years, and was just converting to a very strict diet. It can be difficult to...
  20. itchy
    I took it to mean that in tests (done correctly) the false negative level will be 30%. Or possibly the false positive rate. In any case it appears that the tests will be slightly better and there are at least eight researchers working on improving them. THat's good news to me.
  21. itchy

    ARCHIVED Constipation

    itchy replied to PDB*DH's topic in Dermatitis Herpetiformis

    Not a problem that I have, presumably due to the fairly high level of fruits and vegetables in my diet. I'm grateful for normal bowel movements after fifteen years of undiagnosed celiac disease which I seem to have tamed. Since this is an anonymous forum I'm curious what proportion of DH people experience constipation as opposed to the reverse. (I'm going...
  22. itchy
    I tested negative for coeliac for many years. I was finally able to convince a dematologist that I had DH, though paradoxically he refused to give me a formal diagnosis without me eating gluten for a while and having my skin biopsied. Needless to say, I refused to torture myself that way. I suspect many physicians and dematologists will also refuse...
  23. itchy
    Oligold: First of all, it appears you are coeliac, so you will be unable to eat gluten containing food for the rest of your life, even if your dermatitis herpetiformis symptoms disappear with Dapsone or other treatment. I've never used Dapsone, but it is my understanding that DH symptoms reappear very quickly when you stop using it, just as your experience...
  24. itchy
    It sounds like you might have DH, which is a version of coeliac disease. There are no sure fire ways to stop the itching, but keeping the lesions moistened with any number of lotions and creams will help a lot. Others have suggested pain relieving lotions that may work especially well. (They will soon recommend some to you, I'm sure). But none will make...
  25. itchy
    I think you should be angry. It would appear that the Australian association is guilty of the same attitude that many physicians have-that many people claiming to be coeliacs are 'hypochondriacs' or whatever. It's a paternalistic attitude. But one can still lobby the association anyway. If they don't respond in a positive way they are probably...
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