I have a non-diagnosed rash that I sincerely believe to be dh. It is on both my lower legs, both hips, both sides of my waist. I have gone gluten-free (for a few weeks) and have not really noticed that much of an improvment (I, however, no longer wake up scratching in the middle of the night). A couple of nights ago we ate out, and though I tried to be careful I think maybe I was glutened. I have broken out in yet another spot- my elbow crease up to the middle of my upper arm- but only one arm!

Would this rule out dh? It burned before the rash broke out and now it itches and burns like crazy (like all of the other areas).

Thanks!

I don't think that the new spot only being on one arm would rule out DH. One thing I've read (and experienced) is that the spots slowly disappear over about a week's time, though new spots can emerge if the triggers are still present. So any given part of the body might have spots for an extended time, but I'd guess the pattern would gradually change. That might be something to watch for.

Also, I've read iodine can make it worse, so it is recommended to avoid foods high in iodine, such as kelp. I did find limiting salt helps to lessen the severity too. If your skin is sorta puffy, you might try cutting back on proteins too. As the gut heals, you should find the rash appears less often, and is less severe.

Although my dermatologist tells me DH only breaks out on the knees and elbows I find I break out anywhere and everywhere. There is no rhyme or reason (other than gluten of course). Each break out lasts approx. 6 months in different degrees of severity. Going gluten free after a break out helps but not immediatly. Like I said before, about 6 week duration.
I currently take probiotics and a couple of other herbs and do colonics to decrease severity of DH. This seems to be helping.
Oh, and your original question, no DH does not have to mirror itself. It has a mind of its own and will pop up and suprise you in the most unusual places!!!

It sounds like DH to me. I have biopsy diagnosed DH and mine usually does not mirror itself. Right now- whenever I get glutened I get DH on the fingers of my left hand only. It is pretty weird. Also- It took me 5 months to clear up after going gluten-free but CC makes it spring up every now and then. It is BEYOND frustrating!

Prior to going gluten-free, my DH spots were mirrored (obvious clusters of spots on both elbows, itchiness on both knees/shins). I went gluten-free and the DH spots went away. Now when I get glutened, I seem to have one side that breaks out before the other side does....and if it is just a minor glutening, then it seems that I will break out on one side only. Sometimes I have itchiness on both sides, but only one side gets bad enough to blister up.

Only since going gluten-free, I have occasionally developed itching in strange (for me) places like the insides of one elbow. I don't consider this a typical place and presentation for DH, but I do feel like it is connected somehow.

I agree that avoiding salty foods and seafood can help with the itch as you're healing - things that tend to be high in iodine. A bag of chips with sea salt would be enough to get me quite itchy. Iodine itself is not the problem - gluten is - but iodine is needed for the skin to break out in DH. If you decide to switch to non-iodized salt temporarily, watch for hypothyroid symptoms, since you need a certain amount of iodine.

April

Mine was not mirrored. However, it might appear on one side during one outbreak and then occur on the other side during the second. And the blisters were usually on my fingers or toes, but I have had them on my trunk and legs too. Mine usually came out just one or two at a time. It would not be unusual for me to see a single large blister on one side.

If you think it might be DH, go get it biopsied. I have discovered that dermatologists seem to be a little more on the ball with this than doctors-- at least in my experience.

Good luck!

Lisa

Thanks for your replies! I always learn so much when I come here.

The dermatologist did a "general" biopsy back in Aug/Sep and isn't interested in doing a specific one. He scrapes the rash about every other visit and looks under the microscope and just tells me he doesn't see anything there. He is a resident and always has to call in a more senior dr to look- and they have all said one of the following: dry skin, nonspecific dermatitis, fungal, inflamed hair follicles. This has been going on for over a year!

At my next appt I am going to demand a biopsy for dh- which they keep telling me I can't have because I have not been diagnosed with celiacs (which I haven't been tested for even though I have many of the symptoms).

I've been on 20 different meds for this since it started and nothing helped so I don't understand why they won't listen to me. Talk about frustrating!

Thanks again!

Jeannine

Jeannine, darlin, you need a different dermitologist. A whole year with this rash is maddening!! A resident is only practicing medicine. The physician who supervises that resident may feel you need a biopsy but he wants his resident to make the call. A learning tool if you will. So you are a human learning tool and this resident hasn't learned his lesson. In the meantime you are miserable. Again I say. Find a different dermatologist. One without residents. Let them learn on someone else.

I would echo what casnco has said about your doctor. Also, I've read that the biopsy must be taken from near a rash spot, but not on one, or it will be inconclusive.

Ever notice how doctors practice medicine? I wonder when they will get done practicing and actually know what they're doing.

My son and I get DH very badly on our faces, but we also break out on just the sole of the right foot. My son has also begun breaking out on only his left hand. Very weird indeed. This latest outbreak finally convinced my 20-year-old son to stop ingesting gluten and iodine.

Just chiming in....my DH was everywhere. There was not one area of my body that did not have burning, itchy blisters (so I guess you could say it did mirror itself...kinda like the funhouse mirrors without the fun). It took many months to clear up, but I kept getting blisters now and then...just a few here and there. Lately I've been getting lots of blisters....decided it was the salt in the foods I've been eating. I don't add salt to anything....it's just the stuff already present. Not sure how I'm going to avoid salt completely...we bought kosher salt to try...but if I'm reacting to iodine already present...?