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itchy

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Everything posted by itchy

  1. itchy
    Krobie: I'm one of the ones who believes in just going gluten free, and not avoiding iodine. And most of my lesions are healed, though perhaps over a longer period of time. The problem with avoiding iodine is that it may mask the fact that you are still getting too much gluten, while creating iodine difficiency problems. But for some it may be worth the...
  2. itchy
    JenR, it sounds like you won't have much problem with a gluten free diet. As you've probably guessed, the biggest problem may be well meaning friends and hosts, who will offer you a range of delectible goodies that they claim are gluten free and which are hard to turn down for social reasons. Often they aren't gluten free, unfortunately. To be honest...
  3. itchy
    Gosh, it sounds like taking Dapsone would be a very serious decision indeed. Dapsone already has significant risks without adding in probable sulpha allergy. Going gluten free doesn't have to be really onerous, especially if you are able to be flexible and don't have a lot of social pressures to eat food that others prepare. In my opinion the best way...
  4. itchy
    Daniegirl, the symptoms you've described don't seem like quite enough for me to hazard a guess, one way or another. You could ask to be rebiopsied, making sure the test was properly done ie sampled beside the lesion, not on it. Have you tried going strictly gluten free for a few weeks, also avoiding high iodine foods. (I got enough relief after a couple...
  5. itchy
    No need to apologise for venting. We've all been there. These are my thoughts. If you are already on a strict gluten free diet, and you are not getting any relief, then perhaps it is worth doing the gluten challenge. But if you get a negative result, you still can't be certain it isn't DH, because there are many 'false negatives.' I had 'typical'...
  6. itchy
    My scalp breakout appeared as the earlier DH symptoms were beginning to abate, so may be something else. I haven't found any all round solutions. I've tried a variety of things and they all work a little bit to relieve symptoms, and none of them seem to cure it, unsurprisingly. Their main value seems to be to keep the skin from drying out, and helping...
  7. itchy
    Susan, hang in there. :-) My GI symtoms were markedly better in 4-5 days, but my DH symptoms weren't detectably better until a couple of weeks or so. But after that they improved quite quickly for a while, and the relief was great. That was with complete elimination of gluten. If you are going gluten free for the first time it is easy to ingest gluten...
  8. itchy
    Someone gave me some zinc oxide paste that seems to work a little bit. It seems to help a little with the itching, and it seems to have a healing effect so ultimately this is positive over the longer term. When my skin itches (as opposed to stinging or aching) it is generally because the unhealthy skin around the lesion is drying out, I think. Anything...
  9. itchy
    Yes it is increasing, and that's not just anecdotal. I don't know whether you've read about the study that compared the blood samples of WW1 soldiers with a modern sample and found that antibodies to gluten are several times more common now. Since the genetic predisposition hasn't changed that quickly, there is some factor in our lives or our environment...
  10. itchy
    icuski2: I was much like you, for fifteen years I casually avoided gluten because I knew I was sensitive to it. I wasn't very strict. Then I went back on gluten for a couple of days because my gastrointestinal symtoms had disappeared. Within days I started getting a severe rash that turned out to be DH. The DH is much more sensitive to gluten than my...
  11. itchy
    Best wishes. I hope that you are able to get a positive diagnosis. Many of us have experienced years of negative tests, even though it is obvious we have DH based on skin symptoms and our own experiences with elimination diet. A positive test is a great help because accessing the medical system will be easier if you have it. A negative test will...
  12. itchy
    Hi Susan, As eatmeat4good says, there is a wide variation in how DH presents. There are some symptoms that are quite typical, but just because yours might be different doesn't mean it isn't DH. Some examples: stinging or hurting rather than itching; stinging/itching/hurting worse in the evening; lesions running in lines; often worse...
  13. itchy
    I hope people continue to post on this subject. Over the past few weeks my DH lesions have been on a strong healing trend and are now mostly just purple blotches that haven't stung or itched for several days. But several sites around my hairline have developed sores that don't seem connected to the DH, have different symptoms. Unlike the DH, which...
  14. itchy

    ARCHIVED Iodine Attack!

    itchy replied to ndw3363's topic in Dermatitis Herpetiformis

    I was curious about iodine in dairy as discussed on a couple of threads so I did a little surfing and came up with these general sites. Open Original Shared Link Open Original Shared Link Open Original Shared Link The source below suggests that dairy might be a lower source of iodine than in past years, due to changing practices in the dairy...
  15. itchy

    ARCHIVED Iodine Attack!

    itchy replied to ndw3363's topic in Dermatitis Herpetiformis

    Yes, NDW, perhaps I've been experiencing it too. I've been on holidays and got a lot of sun and ate a bit of seafood. Everything is stinging and itching, including spots not exposed to the sun. So either it is stress from travel, or iodine from the seafood. We ate nothing but fruit, vegetables, meat and fish that we cooked ourselves, so it is unlikely...
  16. itchy
    The factors that create these lesions hang around a long time, and I don't think that they necessarily clear at the same rate from various parts of the body. My worst and some the the earliest lesions are now just faint red spots that don't bother me any more. But there are a few others that have come at various times, including quite recently, which...
  17. itchy
    I have determined that in future I won't eat the dreck that they provide as gluten free food. I suspect that it is risky anyway. A couple of gluten free granola bars will carry me for a transatlantic flight anyway. It's not like I'm getting any exercise.
  18. itchy
    It's interesting to hear both your experiences because I may actually be relating my DH outbreaks to the wrong events. It is very difficult to tell sometimes.
  19. itchy
    Maryanno: I really sympathise with people dealing with multiple medical issues. It must get incredibly complicated. I find DH and celiac to be very confusing, and I only have one issue to deal with. I have been learning to reduce my gluten intake for fifteen years. I have passed several plateaus, each time after realising that I am even more sensitive...
  20. itchy
    'Does everyone pretty much get it in the same place every time?' I had a reaction a few days ago, and it hit only the oldest spots, the spots that it first appeared in, on my arms, many months ago. The reaction wasn't severe and it has almost stopped, consistent with what ravenwoodglass said. So yes it appears to hit the same places. The last lesions...
  21. itchy
    Mikyraso, I also have an intensely itchy ear that began to itch at the same time as I started getting DH at the edge of my hairline. It's never gone further than that. Nothing like what you are describing. Why not stop eating gluten, along with your daughter, and see what happens?
  22. itchy
    Carol, your DH will go away eventually even if you continue to take in iodine, providing you reduce your gluten intake enough. I think results vary. I have never been able to detect any effect of iodine, though admittedly I didn't try removing iodine from my diet until after the lesions were getting very much better. If one can tolerate the DH symptoms...
  23. itchy
    Hopeful1950, I'm with you, worrying about the thyroid problem, though many here seem to avoid iodine for a while without problems. My grandmother, who was raised in the US midwest and Canadian west at the turn of the previous century had a large goiter due to iodine deficiency (before they started adding iodine to table salt). I suspect that if you are...
  24. itchy
    Running girl, I wouldn't assume at all that negative tests indicate that you don't have DH or celiac disease. There are just too many of us here who have had negative tests but quite clearly are celiac, with typical symptoms, and big improvements from avoiding gluten. I think you are doing the right thing by monitoring carefully the results of your diet...
  25. itchy
    After months of standing still, my DH has been improving for a few weeks now. My strategy has been to avoid processed food as much as possible because there are always risks, and gluten free options are expensive. I've introduced seafood back into my diet with no apparent problem. I think that the additional risk from excluding iodine to control DH...
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