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Dh Vs Bullous Pemphigoid
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My father has been on a gluten free diet for about a year. He tried the gluten-free diet to see if it would improve his chronic skin problems. He has a 15 year hx of itchy skin that presented as tiny blisters and then turned into red, itchy sores. This has been primarily on his back, arms and legs. The diet seemed to help at first, and by the time he had blood work, he had been gluten free for several months. His blood work was negative for celiac. Later he had a biopsy, which was also negative, but my Mom thinks the dermatologist didn't do the biopsy correctly, because it was not taken from the edge of the lesion.

Last night, my Mom called to tell me that Dad was having a terrible breakout - his back is a mass of sores. She read something in a magazine about a autoimmune skin disorder called Bullous Pemphigoid (hope I'm spelling it right), and thinks this may be his problem. His dermatologist has never been able to give him any type of satisfactory dx and he has not responded to any of the psoriasis or eczema preparations he's been given.

Does anyone have any knowlege of this disorder? Is it commonly mistaken for DH or vice versa?

I also want to comment, that I don't believe my dad has been completely gluten free. He is 78 and is getting mildly forgetful. I can think of 3 occasions that he ate obvious gluten containing foods without thinking. Most recently he ate the cone of an ice cream cone. That was 2 weeks ago. Could it take 2 weeks for a DH reaction to occur?

Any comments are appreciated.

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I don't know anything about the other condition but do know about DH. After doing a search for bullous pemphigoid it does look at least somewhat similar. You also need a biopsy to confirm that one.

The blood tests for celiac disease were not valid, of course, because your father had been gluten-free or nearly so for a few months. If the dermatologist didn't do the biopsy properly that would also lead to a negative result. I don't know how long it takes DH to return after ingesting gluten, but I understand that even small mistakes can bring it back.

richard

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Time till outbreak varies from person to person. There are several skin disorders that appear similar to DH or can result from undiagnosed DH. I had Sweet's Syndrome long before anyone gave a thought to celiac and DH. My daughter had one of those whose name takes up half a line and I can never remember as well.

The location of the outbreak also varies from person to person. What you described is what our DH looks like. It also has an odd, intense itch. It is different than a histamine (bug bite) itch and is more like thousands of tiny needles attacking from underneath the skin.

The location of the biopsy is important. It is also important that the specimen be handled in a specific way. We had to contact our dermatologist and advise her of an outbreak so that she could arrange for some special equipment and a special pickup from the lab. You might want to do a little research on the process and ask some specific questions of your dad about how his was handled.

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Tell your Dad to use emu lotion -I had that re scaly rash all over my legs and the emu oil did help - ofcourse i also stopped eating Gluten!

Sherry

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Sounded like shingles to me. Has he been treated for shingles?? I *think* that involves anti-viral medication.... but I'm not entirely sure.

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    • I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  
    • Oh, one last thing..... ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.
    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
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