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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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!!