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itchy

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Everything posted by itchy

  1. itchy
    SuziQ: Some of your symptoms sound like celiac. My experience is that celiac symptoms won't disappear unless you have a very strict no gluten diet. Minimising wheat stopped my indigestion but didn't stop other symptoms or the initiation of DH. Only when I got very serious about eliminating every bit of gluten did things really improve. On the other...
  2. itchy
    It was interesting to read about the DQ8 gene. Lots on Wikipedia. Thanks for mentioning it. If it isn't uncomfortable and it doesn't blister, then it hasn't the typical symptoms of full blown DH. DH rashes aren't very treatable with creams, etc. so I don't think you are missing anything special. Maybe children react differently, but if he starts...
  3. itchy
    Poppi: Many of us had some skin symptoms that didn't act like DH before the typical DH arrived. And in the end does it matter? The medical community seems very concerned with categorising diseases based on symptoms, appearance, antibodies, etc. They have their reasons. But those of us with symptoms are primarily concerned with the solution, and the...
  4. itchy
    Rubylantern: Glad you've found a solution!! I had GI symptoms for 15 years, and perhaps as long as 25 years. All GPs that I visited during this period steered me away from celiac as a diagnosis. Only after I took the highly typical DH evidence on my arms to a dermatologist did I get anyone to buy the celiac diagnosis. I wonder if it isn't a negative...
  5. itchy
    I didn't search widely, but the only things I found very useful were antibiotic creams that moisturised and perhaps had an antibiotic effect. Probably don't need to say this, but the best long term solution is to be ever more ruthless in eliminating sources of gluten. I'm not very sensitive to environmental sources, like flour dust, etc. , and some apparently...
  6. itchy
    I would say that it's a good bet that it is DH. In your photos I think I see little blisters, perhaps with hard centres, and surrounded by blazing red. And you say that your skin is painful. That's what I experienced too. (but my blisters were larger and less widespread). With it being that widespread and painful, it must be very unpleastant indeed...
  7. itchy
    I've used various ones. I live in Canada and the UK, so they will be different brand names than in the US, I suspect. I suspect the lotions other commenters suggested will be fine. I think the big thing is to moisturise and soften, so anything that does that will work. Some sort of antibiotic property seems to be useful, in my experience anyway. Probably...
  8. itchy
    I don't know where I saw that 'one in ten thousand' statistic, it is clearly wrong.
  9. itchy
    It seems that the medical establishment is defining these various skin conditions by their external manifestations, rather than their cause. In other words DH and eczema are defined by what they look like. For those of us that have the conditions, we are concerned only about the causes, ie gluten. That allowed my dermatologist to agree with me that...
  10. itchy
    There are contrasting views on this. I'll give you the version I support and you will doubtless hear a different option from others. Iodine doesn't cause DH, but apparently is necessary in some way in the formation of the lesions. In some instances avoiding or minimising iodine in the diet will help clear up the lesions more quickly (much more quickly...
  11. itchy
    I use an antibiotic cream to prevent infection and moisturise the unhealthy skin that grows back over healing sores. One of the 'Polysporin' versions in Canada, and a Boots product when I'm in the UK. It has no curative effect, but it soothes and possibly prevents infection, although infection has never been much of an issue, surprisingly. You mention...
  12. itchy
    Gosh, if her stool is better and other factors too, I'd be inclined to stick to a rigorous gluten-free diet for a while and see what happens. It has to be rigorous, 98% isn't good enough, in my experience. Many of us don't have any medical diagnosis from tests because we always came back negative, despite clear evidence that it was gluten causing our...
  13. itchy
    I'm curious. It's claimed that one in a hundred people are celiacs and one in a hundred celiacs have DH. That would mean one in 10,000 have DH. But I know one other person in my county of 8,000 who has DH and I only know a small proportion of the people who live there. In another context I know two celiacs, one of whom has DH, in a much smaller community...
  14. itchy

    ARCHIVED Gluten Challenge

    itchy replied to JenR's topic in Dermatitis Herpetiformis

    JenR: I think it is very difficult to always notice a 1:1 correspondence with gluten intake and DH symptoms. Especially now that my DH is clearing up, accidental glutenings seem to have different effects at different times. Sometimes rapid return of stinging and open lesions, sometimes delayed by a couple of days, other times little effect. I'm not experienced...
  15. itchy
    Everybody's situation is different. But here's my take. I never needed to have an official diagnosis, once I was convinced it was DH. I have had various tests for celiac over the years, all of which just led the medical system away from celiac as a diagnosis when they turned up negative. After two years I've had enough brushes with gluten to see the...
  16. itchy
    Before I went strictly gluten free, I had mild GI symptoms but I also had a variety of mild skin symptoms on my hands that came and went. When full blown DH developed it was at only some of these sites. When I went extremely gluten free, all of the mild skin spots disappeared and only the DH spots remained, slowly getting better. What I am trying to say...
  17. itchy
    gfreegurl: they aren't the same thing. But many physicians will diagnose DH systems as eczema. Mine admitted that the lesions on my arms were DH, but insisted that the somewhat different looking rash on my shins were eczema. Ignoring my protestations that both 'stung' rather than itched and both were improving with a gluten free diet. If you are celiac...
  18. itchy
    I suppose the value of a test would to eliminate some 'other' skin condition or allergy. Many of us are happy to know that if there is a 1:1 corelation between gluten and rash, then we've got DH.
  19. itchy
    George, In my case some areas of my skin continued to get worse as other areas were getting better and I was (in theory at least) gluten free. So I'm guessing that there is a certain 'momentum' in the disease, whereby the immune response continues to build in some areas even as the general situation is improving. After a lengthy period these last lesions...
  20. itchy
    Kmag, my experience is somewhat different. I haven't used Dapsone or avoided iodine. My lesions are almost healed and don't sting or itch much any more. But it has been many months. The advantage of doing it 'cold turkey' if you can is that you will become very aware of those 'marginal' foods that contain small but significant amounts of gluten. You...
  21. itchy
    Hi Chrissy, Welcome to the club. I suspect there is no rainbow ending. You don't have much choice but to stop eating gluten, and most of us have to get rid of even the smallest amounts from our diets and anything that touches our bodies, like shampoos, etc. There are a lot of different strategies for helping to deal with it, like taking Dapsone, limiting...
  22. itchy
    I had not read of false negatives with the skin biopsies! I wonder if that is due to taking improper samples, and/or human error in the lab? I'll look up that book!
  23. itchy

    ARCHIVED Dh And Sun

    itchy replied to Lalama's topic in Dermatitis Herpetiformis

    I understand your frustration. I hate hats. I live in a cap wearing rural culture, but I've avoided hats for decades. Generally I haven't noticed that short exposure or exposure in the morning or evening has any negative effect. Sometimes mid day exposure seems to be a problem, other times not. It's confusing. But I notice that the outbreak on my...
  24. itchy
    Has anyone had experiences with airline gluten free meals? I just had an Air Canada gluten free meal that had a package of cookies clearly labelled as containing wheat as the main ingredient. Furthermore two of the 'add-on' parts of the meal, a pasta salad and a roll, appeared to be the same as other passengers were getting and seemed to be made from...
  25. itchy
    The above posts seem to cover most of it. I move back and forth between Canada and the UK. Generally the UK has better labelling, but the products differ a lot, so it is a learning experience going from one to the other. One difference I found is that oat products are labelled as containing gluten there, and I didn't find 'pure oats' though they may exist...
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