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Is Dh Always Mirrored?

jeannine

By jeannine
in Dermatitis Herpetiformis

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jeannine Apprentice
jeannine
Posted

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!

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RiceGuy Collaborator
RiceGuy
Posted

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.

casnco Enthusiast
casnco
Posted
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!

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!!!

ItchyMeredith Contributor
ItchyMeredith
Posted

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!

April in KC Apprentice
April in KC
Posted

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

Lisa16 Collaborator
Lisa16
Posted

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

jeannine Apprentice
jeannine
Posted
  • Author

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

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casnco Enthusiast
casnco
Posted
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.

RiceGuy Collaborator
RiceGuy
Posted

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.

RoseTapper Newbie
RoseTapper
Posted
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!

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.

flourgirl Apprentice
flourgirl
Posted

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...?

  • 5 weeks later...
elefky Apprentice
elefky
Posted

My DH rashes are NEVER mirrored. My original outbreak was on my scalp, then some on my chin, my upper back, and a few scattered ones (even on my eyelid) untill I was diagnosed. My dermatologist was unable to diagnose untill I went to her with a nice fresh blister which she removed to send out for a biopsy, and it came back as DH. I know I have seen comments on this board that the biopsy should be NEAR the breakout but I am sure that she actually tested the blister. My outbreaks now are usually limited to INSIDE of one elbow and occasional blisters still on my scalp and a few other spots.

RoseTapper Newbie
RoseTapper
Posted

Definitely see a new dermatologist! I attended a workshop given by one of the top experts on DH in the country, and he said that he spends a great deal of his time training dermatologists on the correct way to biopsy DH. In order to end up with a "positive" biopsy, your dermatologist must biopsy the skin NEAR the lesions. If he biopsies the lesions themselves, they will ALWAYS come out "negative" for DH. Many people are told by their dermatologists that they don't have DH because the biopsy was negative, but that was only because the doctor did the biopsy incorrectly. It is shameful how many dermatologists in this country are simply not trained well enough to diagnose DH in their patients.

  • 3 weeks later...
JenR Rookie
JenR
Posted

(post moved to separate thread)

  • 1 month later...
Jenm4cm Newbie
Jenm4cm
Posted

I was just wondering if you have gotten a diagnosis yet? I am new to this forum and just read your message dated back in February. Doctors can be soooo frustrating!! It took 17 years to diagnose DH for me - and then the doctors that I saw could not agree on anything! The dermatologist took 2 biopsies and confirmed the DH. I then went to the gastroenterologist for an intestinal biopsy and bloodwork - it came back negative so said that I DIDNT have celiac disease. I couldnt believe that with all of the stomach problems that I was having. I just figured that I had dealt with the rash for so long that I really didn't need to go gluten free if I didnt have celiac disease. I then went to an allergist for other issues and he said that it was absolutely imperative that I go gluten free because of the DH - I was so confused!!! The only thing that helped was books on celiac disease. I learned that DH IS celiac disease and I never even needed to biopsy my intestine after I already had the DH diagnosis. I am now realizing that I need to find a good doctor who is knowledgable about this disease - most of them do not know what they are talking about! I had a severe attack last weekend - pain in my upper stomach that is absolutely crippling. The only way that I can describe it is that I would rather be in labor having a baby! I havent had that pain in awhile and the only thing that remotely helps is a heat pack. I am hoping that a specialist in celiac can give me some anwers on what to do when that happens.

Anyway, just wondering if you had gotten your diagnosis.

Jenny

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

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