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itchy last won the day on January 26 2015

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About itchy

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  1. 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 that part of the day, perhaps diverting attention or covering the lesions then.

    If the DH is bad it may take months/years to go away, even with a strict diet, but it will get better after a few weeks or months, presumably.

    I am a little surprised you've had a problem with infection, of scores of lesions I've had none have been infected, but that just shows the variation that occurs.

    Eating out will always present a huge problem, because you put a lot of trust in people you don't know to look out for your interests. Personally I don't trust any sauces, etc. even in places that claim to have gluten free meals/menus.

    It can take a while (months, years) to learn what a real gluten free diet is, and which risks are worth taking. People vary somewhat in their level of sensitivity, and you will learn how sensitive Grace is over time, mostly through mistakes.

    I believe that most people can conquer DH without medication, but with Grace's autism this might not be realistic.

  2. 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 they 'stung' and hurt, rather than itched, although the distinction may be a fine one. I associate itching with the healing period in the process, stinging with getting worse.

    I can't offer an opinion about the blood panel. None of the medical testing I had ever identified DH or coeliac disease and I am self diagnosed largely as a result of comparison photos, associated gastrointestinal symptoms, and the fact that strictly avoiding gluten 'cured' both aspects of the disease. Albeit slowly in the case of skin symptoms.

  3. 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, ingnoring the rapidly increasing rate of coeliac disease. It doesn't help that people with DH often don't have typical coeliac gastrointestinal symptoms.

    JMB, from your symptoms I'd suspect DH. Intensely itchy and bilaterally symetrical would be big tipoffs. As soon as you mentioned 'elbows', mine started to itch. You may want to watch for some linearity in the lesions, too.

    My $.25 worth: I encourage you to question whether you really need a formal diagnosis. There may be real, and important reasons for having a formal diagnosis in your particular life, but I have got along quite well for the past few years without one. I mean, given your experience with MDs does their diagnosis really mean anything?

    A few weeks of strict gluten avoidance would probably tell you whether it was DH, though it could take much longer to go away.

  4. 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 inflammed patches, broken or scaly skin which never seems to heal over a long period.

    Itching or stinging to the extreme is characteristic. The fact she was complaining about it suggests that it IS itching or stinging, but perhaps she just hasn't got an extreme case. Yet.

  5. 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 your gluten intake to zero has to be a priority I think. I quickly noticed the reduction in itching when I did that, but it still took months to get to really tolerable levels. It can be a very long process.

    After three years of strictly avoiding gluten the only lesions I have left are on my scalp, so I'm investigating whether shampoos could be a problem. I occasionally have skin contact with wheat since I work in agriculture, and have never noticed an effect. But shampooing involves wet skin, where gluten would likely be absorbed more. So I've switched to a 'gluten free' brand. I can't comment on the brands you use, but others will.

    Good luck!

  6. 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't seem to be a result of any of the usual suspects-gluten, iodine, salycyclates or anything else identifiable. I just got worse.

    But at times when I know I've been glutened my lesions will normally get extremely red and sting. New areas will develop 'pimples' that are extremely itchy and eventually become lesions, probably because I can't resist scratching them. Then as they heal they become very itchy.

    But the good news is that when they subside I am normally no worse than previously.

    As I have gotten better, the effect of small accidental glutenings has become temporary, to my great relief.

    I hope that there is something in there of help.

  7. 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 all the answers, and that there is a lot of variability of circumstances and physiology that must be taken into account.

    As for the level of iodine that people need to be healthy, please understand that I do not consider you an expert. Even.

  8. 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 conquered without paying any attention to iodine.

    I agree that it is worth experimenting with, but people who don't feel they want to reduce iodine shouldn't feel their situation is hopeless. Iodine is not a causal factor in DH, only an aggravating factor for some people. The cause is gluten.

  9. 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 automatically that you need to eliminate it. There are many factors to take into account.

    Tetleyt, your experience parallels mine. For years I controlled GI symptoms by limiting gluten, but not strictly. I had no noticeable DH symptoms. Then one day I had a big gluten meal when I felt it was socially necessary. A few days later I had the start of my major DH outbreak.

    Only when I got rid of all the minor gluten sources, and the accidental glutenings, did things start to improve.

    But realistically, I was probably damaging my GI system even previously, because I feel much better now than I did then.

  10. 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). And the fifth simply agreed after examining my evidence acquired online that I was almost certainly correct. What he would have come up with on his own is uncertain.

    Once you are strictly gluten free for a while, I predict you will be so certain that your self diagnosis is correct, that you won't need outside confirmation.

    I find I need to be extremely strict about consuming gluten, but gluten on my skin or breathed in don't have any effect I can detect.

  11. 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. Many of us also have hard centred scabby lesions, circled by brilliant red to purple blotches. Most people can't endure the stinging and scratch the lesions, which usually produce blood or a thin bloody fluid. They can take months or years to heal. Bilateral symetry is apparently a characteristic of auto immune diseases like DH, so that would be a good indicator.

    But there are several variations that still appear to be DH. Perhaps your rash is a variant, or perhaps it will progress to something even more miserable.

    Most of us don't regret going strictly gluten free. For me, I was instantly rewarded by an end to my GI problems, and after three years my DH is almost gone too!!

  12. 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 that you have to eat gluten free for the rest of your life. If indeed you are coeliac and have DH, I think that you can expect to see the rash return (perhaps with a vengeance) whenever you return to a gluten diet.

    Perhaps not a typical location for a DH rash, but otherwise sounds like it. Most coeliacs are intolerant of milk, I'm not sure it is lactose intolerance, because Lactaid never made any difference for me. I am still intolerant of raw milk products but don't have a problem with cultured milk products like cheese or yougurt. Generally milk intolerance improves with a gluten free diet.

  13. 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 to get ahead. It will be harder on a gluten free diet, but when you have DH there isn't much choice in the matter. If you have DH you are coeliac which is over time a life threatening condition but only untreated.

    Eatmeatforgood had some great suggestions.

    You didn't give other details of your circumstances, such as whether you live in a big city, or what part of the US. Certainly if you live where there is a large Asian population there may be access to cheaper sources of rice based products and asian vegs, etc. which are often much cheaper than than in the supermarket.

    Manufactured food of most kinds poses risks for coeliacs, the safest is always fresh food, which unfortunately is often expensive. Frozen may be the cheapest, safest option. If you have the cash and space for a deep freezer buy a small one and freeze vegetables when they are on sale in season.

    Buying food labelled gluten free can be extremely expensive, esp at specialty stores. I rarely go there because I rarely feel the need. My solution was to rethink my approach to diet, and to decide that I don't need to 'replace' my previous diet. I no longer eat cake, sandwiches, cookies, etc. No need for gluten free substitutes. Instead I eat a more 'asian' diet. One exception locally here in Canada is that I can buy gluten free oatflakes from a local supplier at good prices. Watch for exceptions like that. Porridge is cheap.

    Some areas have 'gleaners' groups, often informal, that collect up unharvested fruit, etc. If you can find one and explain your circumstances you may get some free vegs or fruit. When I worked at a food bank we gave away lots of naturally gluten free food. Unfortunately most of the staff didn't have any knowledge of the diet so it was a hit and miss affair. As a coeliac I made a big effort to connect the right food with the right people, but it was never quite satisfactory.

    Best wishes.

  14. 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 eliminate every shred of gluten from your diet if you are just starting out, so you should concentrate on that, IMO. It may take months to learn all the pitfalls, depending on how astute and disciplined you are.

    I differ from many of the posters on the list. I have never been able to detect any effect of iodine, salycyclates or any substance other than gluten on my DH.

    Iodine is essential in preventing thyroid diseases. Salycyclates are implicated in reducing several types of cancers. Many high iodine foods like salmon, sardines, mackerel are useful in preventing heart disease.

    Unpleasant as it is, DH doesn't kill. Heart disease, thyroid disease, and cancer do, as well as coeliac indirectly. In my opinion it is dangerous to eliminate or significantly reduce otherwise health giving foods from the diet without an extremely good justification.

  15. 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 to hazard a guess that NO one has normal bowel movements with coeliac disease).

    Are you sure you need such a restricted diet? Not all people with DH need to avoid salyclates or iodine. This only seems to affect a proportion of people, though I don't know what proportion.

    Maybe there is a compromise approach, where you up your intake of fruit and veg, without overdoing it.

    Your body should be the determining factor not rules imposed by others.

    This page seems to have some useful general suggestions.


  16. 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 a formal diagnosis. (I hope anyone with opposite experience will post) So far I haven't needed a formal diagnosis for anything though I can see that it might be important at some time. A medical insurance company was quite willing to believe me when I said I had DH in order to turn me down for coverage of that condition, but I suspect that if I had made an insurance claim earlier they would have refused without a formal diagnosis.

    Fortunately I live in Canada, so only need insurance for travel.

  17. 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 has shown. Dapsone IS NOT a treatment for DH or coeliac. It only interfere with the process which results in the itchy lesions. Even taking Dapsone, you still have DH, and therefore you are coeliac.

    Besides not wanting to expose myself to the side effects of Dapsone I decided not to use it because I didn't want it to mask any reactions I was having to hidden gluten. I was able to do this because my lesions were mostly in unseen places and weren't unbearable (though certainly extremely unpleasant).

    And you are right to be very strict about the gluten. Improvements will only come with a strict diet. It can take weeks of even years. It has taken me almost three years, though improvement came in the first few months, and the past year hasn't been too unpleasant.

    A couple of hints: take photos of your skin for future reference and to persuade future doctors who may disbelieve your condition.

    Regarding other treatments, I suggest you read a lot of back posts in this forum. There are many different approaches and not everyone is the same. For example I am not sensitive to skin contact with gluten, nor iodine in my diet, or other factors, but some others are.

  18. 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 the itching/burning disappear completely at once, I think.

    But you should be confident that if you are able to eliminate gluten completely from your diet you WILL eventually be rid of this scourge. It may take weeks, or much longer, but the itch will get better if you get rid of the gluten.

    I urge you to read through a lot of the older threads in this forum. There is a wealth of information there, including much that you will rarely hear from a physician.

  19. 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 useless in any case, and being in the association would be a waste of money.

    The Canadian association recently took up an issue I had with Air Canada in flight meals, and didn't question the fact that I wasn't a member. I thought that was good of them.