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itchy

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Latest Celiac Disease News & Research:

Everything posted by itchy

  1. itchy
    The genes that predispose people to coeliac are quite common but most people with the genes don't get the disease. That said, the disease is several times more common than it was a hundred years ago, based on comparison with stored blood samples. Something in our modern life is causing the genes to be expressed more frequently as a disease. If...
  2. itchy

    ARCHIVED Possible Dh?

    itchy replied to DaVille06's topic in Dermatitis Herpetiformis

    Your symptoms certainly sound like DH. For people with both gastrointestinal symptoms from coliac disease AND DH, DH will likely be more sensitive to gluten. So maybe your gluten intake is still too high. You could be controlling your GI symptoms but still getting enough gluten to aggravate your DH. Best wishes. It can take a long time to figure out...
  3. itchy

    ARCHIVED Is It Dh?

    itchy replied to Darwin's topic in Dermatitis Herpetiformis

    From your description it sounds like it could be DH, but hard to say for certain. Your description is not the classic description of DH, but there are many variations. My DH occurred primarily on my arms, from my wrists to my shoulders, but especially on my elbows.
  4. itchy
    Your situation is exactly how my DH developed. I'd been eating relatively gluten free for years due to gastrointestinal symptoms and decided to eat 'normally' for a few days because my symptoms had abated and I didn't want to be a bother where I was visiting. And suddenly I had a DH rash, that took me several months to identify. So far as I know...
  5. itchy
    In my case the DH was more sensitive to gluten than the gastrointestinal symptoms. My GI symptoms disappeared quite quickly with a gluten free diet, and have never reappeared even when my DH become aggravated. I think that is common with people with DH. Is it possible that your diet isn't quite gluten-free enough? In any case DH can take a very long...
  6. itchy

    ARCHIVED Iodine

    itchy replied to Jaxonthehuman's topic in Dermatitis Herpetiformis

    Iodisation of table salt isn't practised as intensively everywhere as in the US and Canada. In the UK most table salt is apparently not iodised as near as I can tell, and the standards for iodisation call for lower amounts to be added. That makes sense because iodisation was a programme to cut down on iodine deficiency diseases resulting from low...
  7. itchy

    ARCHIVED Iodine

    itchy replied to Jaxonthehuman's topic in Dermatitis Herpetiformis

    Hi Jaxon, Some observations: I would have thought you would be improving after two and a half months, but it isn't unusual to get new lesions even on a gluten free diet. Several of us have had that experience. I'm sure others will comment on iodine, but I think that they will say that reducing iodine will help even if not all the iodine is eliminated...
  8. itchy
    When my DH was at its peak the worst was always in the evening. It would be excruciating, burning intensely and the skin of my arms would ache. A little more in the early morning, often waking me up. Only rarely bothered me late at night. Generally I wouldn't notice it during the day. More recently it bothers me all day, but much less intensely.
  9. itchy
    Hi Tricia I strongly agree with your concern about the prepared foods at school being very risky. You have to have a lot of trust in someone to allow them to prepare your food, because it takes a lot of time and experience to reach a truely gluten free diet. Well meaning people are often the source of accidental glutenings. We've all developed our...
  10. itchy
    I have had new areas of rash start while being gluten free and while the original rash was almost healed. So I don't think it would be surprising for a new rash to form a while after going gluten free. Whatever factor causes DH seems to hang around the body and may trigger a reaction even after gluten has been eliminated. It's also possible that he is...
  11. itchy
    Right, AVR. And we pitched all the curry powder because that seemed to be causing a reaction. I'm sure it had unstated contaminants in it.
  12. itchy
    Remember that negative test results do not guarantee you don't have DH. There are a lot of false negatives.
  13. itchy
    As you've already figured, weaselfish, results vary. It has taken me 2 and a half years to get to the point I am now, where I have no bad lesions and just a half dozen healing sores. One would think these would heal in a few days, but no, it's taking weeks. Occasional mild relapses suggest I'm still getting gluten somehow. Or maybe not. I have...
  14. itchy
    You've asked the million dollar question. I think we'd all like to be able to trace back with certainty to what food we ate that caused the lesions. I don't think there is likely to be a cut and dried answer though, due to the interplay of gluten, iodine, and one's own immune response system. There really needs to be research on this. I encourage...
  15. itchy
    By your symptoms and the photos you certainly could have DH and be celiac. The range of symptoms can be quite broad. Do the blisters sting or itch like crazy? That would certainly be a sign. Also the lumps seem to be on your knuckles. I've never heard of that before, but it often strikes knees and elbows, so knuckles would be similar. If the dermatologist...
  16. itchy
    I'm just a few pounds over my ideal weight, and have never had a weight problem. Interesting study.
  17. itchy
    Wildwood: For what it's worth, my DH started when I went of my gluten free diet a couple of years ago. I had been unaware I was celiac but was eating gluten free because I knew I didn't tolerate wheat products. But my GI symptoms had abated so I risked eating a few gluten meals rather than inconvenience my hosts where I was visiting. Within days I had...
  18. itchy

    ARCHIVED Remission?

    itchy replied to lil'chefy's topic in Dermatitis Herpetiformis

    It's my understanding that if Dapsone cures your skin problem, that is proof that you have DH. If you have DH, you are coeliac. If you are coeliac, gluten will be causing you damage, seen or unseen. Most of us coeliacs have quite a bit of experience with uninformed physicians. It's better to become self informed from reliable sources. It also seems...
  19. itchy
    Best wishes diandliam. It's hard when you don't have the support of the people around you. 'Gluten lite' is better than no limits at all, but in my experience it's the last bit of gluten out of the diet that makes all the difference.
  20. itchy

    ARCHIVED Remission?

    itchy replied to lil'chefy's topic in Dermatitis Herpetiformis

    Sounds like a complicated situation. But if you have DH you also have celiac disease, so you shouldn't eat anything with gluten, which it sounds like you are addressing. It is fortunate that you are now mostly symptom free, but personally I would be expecting that it wouldn't last, and also that you have real damage to your GI systems that may be...
  21. itchy
    Hi diandliam: As we've discussed elsewhere, we DH sufferers really need some research to get understand what is causing these responses. I've written a letter to my national celiac association requesting them to undertake a research project. I urge others to write to their national associations in a similar vein. You can probably draft a better letter...
  22. itchy
    First, DH might still occur at very low levels of gluten in your diet, even though other celiac GI symptoms were calmed. For many of us it has taken a long time to get every last shred of gluten out of our diets. Second, as we've been discussing elsewhere, it seems that once the DH process has started, it can take a while to work out of the system, even...
  23. itchy
    Diandliam: I think it would be wonderful if you could collect up information about people's experiences with DH. Can I suggest a questionaire, so that people's responses are somewhat quantifiable. Many of us have 'citizen's diagnoses', so we might as well start learning about this disease via citizen's research. If that's what you had in mind...
  24. itchy
    Diandliam: I've never been able to detect a corelation between iodine intake (or seafood consumption) and DH symptoms. Some people seem to be more sensitive. Yes we need more research. Perhaps we should be pressuring our national coeliac associations to lobby on our behalf for controlled studies. Glad you are feeling relief. Me too. I can see the...
  25. itchy
    I'm sorry I upset you. Obviously there are a lot of different responses to gluten, and apparently many skin conditions caused by gluten exposure. All us us suffer miserably from this plague, regardless of the specific sensation we feel. The literature I recall suggests stinging and pain as typical of DH, but I'll check my facts before posting further...
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