Newbie Just Investigating The Possiblility Of Dm

[boysmom]

I have only recently learned enough about celiac/gluten intolerance/dermatitis herpetiformis to begin to suspect that it may explain a lot of the issues I've dealt with over the last (at least) 10 years. I have only begun the testing process and have an appointment with a gastroenterologist in about a month, but if you don't mind I have a few questions for you while I wait.

I have had a recurring rash over the last 10 years that seems to me like it *could* be DM and I'd like to see if it sounds right to you who have lived through it.

1. Rash first appeared about halfway through my 5th pregnancy (4th pregnancy ended in miscarriage 2 mos before this conception). While it started on my lower abdomen, over the course of 4-6 weeks (and many attempts with creams, ointments, and benadryl) it spread to cover me from the neck down and was beginning to move up the back of my scalp when they finally prescribed a course of prednisone which finally put it at bay. I've read a lot about another drug, but does DM respond to prednisone?

It was excruciatingly itchy and not scratching was NOT an option. Scratching left me sore and bruised feeling, but even that was an improvement.

2. It returned shortly after delivery and seemed to run a course of breaking out for 8 weeks, then slowly improving for 8 weeks, never completely healing, before breaking out again. Each breakout seemed a little milder than the one before and my husband was making some career changes (thus insurance changes), followed by 3 moves in 2 years, which caused me to decide to just wait it out for a while. By the time we'd settled it just quit coming back.

3. It has come back a few times since, but never as severely. Usually it's been just the lower belly area and upper thighs, or only on my elbows or knees. Usually in the heat of summer or the coldest part of winter when I'm spending a lot of time dressed warmly or under heavy blankets.

Another aspect of my rash: Does DM behave somewhat like hives, in that it seems to itch more or spread more when it's warm or constricted? Does it seem to flare when you develop another, unrelated rash? I've had a few times now when I got a light rash similar to poison ivy when I'd been out pulling weeds (NOT poison ivy, because I know what that looks like and don't touch it), but then I proceeded to break out over the next 3 weeks in places that I know had no way to come in contact with the weeds (again, my lower belly, upper thigh area or buttocks). I do wash thoroughly and change clothes when I've been in weeds because I know I am prone to rashes.

I appreciate any insight you can give me, so I can go to my Dr appointment well armed with information and, hopefully, find some answers I can do something about so I can get to feeling better again.

[boysmom]

And that subject should be that I'm investigating DH... that's what I get for trying to do too many things at once. Sorry

[ravenwoodglass]

If you want to know for sure if it is DH you should go to a dermatologist while the rash is active and ask them to biopsy looking specifically for DH. The biopsy will be done on an area next to the rash not on the rash itself. A diagnosis of DH is a diagnosis of celiac.

You might want to take a printout of this from the NIH with you to show the derm if needed.

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[ChemistMama]

ravenwoodglass is correct, do not go gluten free, and go directly to a dermatologist for a biopsy (and do not pass go and collect $200).

DH can be resolved temporarily with steroids, but in my experience (and my dermatologists), the rash just comes back worse later if you're not gluten-free. It itches like a bear and can get worse if you have 'prior skin trauma'. Go here and search "minor trauma to the skin"

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Yes, there is a drug for DH called dapsone. If you're interested, search the forums for 'dapsone' and you'll get a lot of posts. It works great but can also be a nasty drug with unpleasant side effects.

Good luck!

[boysmom]

I typed out a nice long reply to this a couple of days ago, then just as I was about to send we had a power surge and my laptop (that doesn't have a battery) shut down and I lost it all

I do not currently have a rash. We do not eat a typical American diet, so it's not unusual for us not to eat bread for several weeks, then eat a lot of sandwiches during a busy time, and I'm suspecting that this is why my rash comes and goes more than some? My last outbreak was when we'd made a trip to see the grandmas and had been eating sandwiches all week long. Since the whole idea of watching gluten is brand new to me I don't have any way to measure exactly how the rash and my diet corresponded in the past. This has been going on (off and on) over 10 years. LOL I thought I was doing the healthy thing by grinding my own whole wheat flour and making our home totally white flour free.

I posted a more complete explanation under the Prediagnosis area titled Esophageal Spasms which, I hope, explains why I'm unwilling to subject myself to weeks of eating high-gluten foods to get a diagnosis. As if the simple misery of the rash itself weren't enough to make that an unappealing option

I'm really not expecting anyone here to make a diagnosis, but I would like to pull enough information together to show my doctor and/or the Gi doc so they will take me seriously and help me find the help I need. If the description of my rash does NOT sound to you like DH for some reason, please tell me and explain why so I don't confuse the issue with my doctors by including symptoms that don't apply. While it seems on the surface that nearly every medical issue I've had can be explained by celiac/gluten intolerance, I recognize that in the real world there is often more than one thing going on at a time. I just really appreciate the advice of those who have gone before and can help me navigate these murky waters.

[mouse]

I had a blistery watery and horrible itchy rash on my fingers since I was a teenager. Once I went gluten free, I have never had the rash again, unless I got accidently glutened. If you see a dermatologist while you have the rash, he can take biopsies and then you would have your diagnosis of Celiac. You can only have DH if you are a Celiac. Just make sure that they do the biopsies on the areas beside the rash and not directly on the blister themselves. I went to dermatologists for years, but they only tested the blisters and not the surrounding areas.

I really think you need a definate answer as it is too easy to go back on gluten, when you begin to doubt your self diagnosis.

Good luck and it is really great not to itch like that anymore.