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Anyone Been Dx Dh By Sight, Then Wanted Biopsy Later?

jljeje

By jljeje
in Dermatitis Herpetiformis

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jljeje Newbie
jljeje
Posted

Looking for anyone who may have a similiar experience as mine...

It started late June last year...was under a terrible stress and strain, and started getting itchy all over, but some places worse than others. But nothing was showing up on my skin. Had other things going on too, but didn't link it all together - like headaches, insomnia, fatigue...irratibility.

Finally went to my family doc last August because by then it was a horrible fiery rash around my elbows on both arms. At first, it just felt itchy and couldn't see anything. Then areas started turning very red and that's when the burning started along with very tiny bumps. Next, blisters formed, mostly water, but some seemed like pus. The worst thing was I was absolutely not able to control my scratching. But the scratching didn't begin to alleviate the itching.

My doc diagnosed me with shingles - gave me antibiotic and steroid pack. Eased the fire for a few days, and came right back. Anyway, went back 4 times, kept getting steroid pack and started getting the sterioid shots too. Would just ease the burning itch a few days and start back up. She finally sent me to dermatologist Jan of this year. He looked at what was left of my rash - of course all blisters had been broken and scarring had set in. But he said he was certain it was dermatitis dh. Told me to go gluten free, no seafood because of probable iodine sensitivity and started me on Dapsone.

I immediately improved, although still itchy because of being new to the diet and getting used to questionable ingredients. But I no longer 'just had to scratch' although I'm still breaking out in different places - back of knees and fronts of legs, which he calls excema. Because I've been on thyroid med for the last few years and have had years of gastro misery, I decided that I wanted a skin biopsy to be absolutely sure. I've read if the skin biopsy is positive for dh, the intestinal biopsy isn't necesary. My dermatologist said sure, but you've got to start eating seafood and gluten to bring on the blisters again - says I must have an active blister for him to biopsy - actually right next to the blister.

So the last 2 weeks, I've been eating a 'normal diet'. All my old 'blister patches' have turned bright red again, and after eating something with lots of gluten, I get itchy. So far, all I have had is the little tiny bumps but no blisters and no fiery itch. Does anyone know how long it takes to produce the blisters? :huh: Also, I'm not feeling so good either - headaches, gastro, etc.

Please accept my apolgy for being so lengthy - there are just so few people to talk to about this - even in the support group that I visited. Thanks! :)

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krisb Contributor
krisb
Posted

I just posted a similar post. I feel so much better without gluten. I would love to have a definite dx but I do know that even if it was negative I won't go back on gluten knowing it makes me feel so much better. My elbows are pretty much perfect since I went gluten free. And all my other symptoms are better too. I have better seizure control, stomach problems are better, etc... The only reason I would like a dx is for my kids benefit. It's good for them to know. I'm not even sure how to go about a biopsy. I don't want to go to a Dr. that doesn't know what they are doing. The allergist dx it as psorisis and gave me steroids. Then the dermatologist told me it was DH.

Pegster Apprentice
Pegster
Posted

I usually get blisters right away if I have a gluten accident- Usually within 24 hours, but I've been gluten-free to the best of my knowledge for two years now.

Ursa Major Collaborator
Ursa Major
Posted
My dermatologist said sure, but you've got to start eating seafood and gluten to bring on the blisters again - says I must have an active blister for him to biopsy - actually right next to the blister.

What does seafood have to do with it? If it's really DH, that's nonsense as far as I am concerned. Otherwise he is right. But is it really worth it?

But I no longer 'just had to scratch' although I'm still breaking out in different places - back of knees and fronts of legs, which he calls excema.

Doesn't he know that the deposit under the skin that cause DH won't be gone for at least one to two years, sometimes up to five, and can still cause DH outbreaks for that amount of time, even gluten free? I strongly doubt that it's excema, but rather DH, even though not as bad, because of the gluten-free diet. You know, you can get DH anywhere on your body, with the most common places the ones they claim are the only ones.

Kris, for a positive diagnosis you would have to go back on gluten. Do you really want to do that? I thought I wanted it, too, and did a gluten challenge last week. I lasted four days, and got so sick and aching so badly, gaining two pounds a day, and itching so awfully that I couldn't sleep. I decided it wasn't worth it and quit. Who cares what anybody thinks, I know I can't tolerate gluten, and my doctor agrees, and that's it.

jljeje Newbie
jljeje
Posted
  • Author
What does seafood have to do with it? If it's really DH, that's nonsense as far as I am concerned. Otherwise he is right. But is it really worth it?

Doesn't he know that the deposit under the skin that cause DH won't be gone for at least one to two years, sometimes up to five, and can still cause DH outbreaks for that amount of time, even gluten free? I strongly doubt that it's excema, but rather DH, even though not as bad, because of the gluten-free diet. You know, you can get DH anywhere on your body, with the most common places the ones they claim are the only ones.

Kris, for a positive diagnosis you would have to go back on gluten. Do you really want to do that? I thought I wanted it, too, and did a gluten challenge last week. I lasted four days, and got so sick and aching so badly, gaining two pounds a day, and itching so awfully that I couldn't sleep. I decided it wasn't worth it and quit. Who cares what anybody thinks, I know I can't tolerate gluten, and my doctor agrees, and that's it.

You bring up some good points that I had overlooked - you're right about those deposits being under the skin for years AND about still having outbreaks from that. You just might be right about the excema being dh as well; I've thought that myself - although it does look a little different. But I've had skin rashes all my life and years ago, people here would say 'oh, you just have sensitive skin', or 'you break-out because you're so fair' and 'stay out of the sun' and 'use hypoallergenic stuff', and of course now I wonder about all those things - guess we all do if we've been told we have dh - but absolutely nothing itched like the rash I had a few months ago. Yes, it sounds crazy to go back to gluten, doesn't it? If I don't get a big fat blister(s) like I had before, (about 1/2 inch diameter), I'm going to go in and show the doc these smaller bumps that I have that everyday are looking fuller - like there is fluid accumulating in them. Either that, or just go back to the diet.

For the longest I couldn't figure out about the seafood either, but I found out that alot of people with dh also have a sensititivity to iodine. The doc said the largest concentration of iodine is found in shellfish, but is in all seafood,and to even watch out eating salted chips or licking salt off a margarita glass. Well, I didn't believe it and had some nice crab salad before my salmon, and you wouldn't believe how that set my rash off!

Thanks so much for you comments - very helpful! jljeje

Ursa Major Collaborator
Ursa Major
Posted
For the longest I couldn't figure out about the seafood either, but I found out that alot of people with dh also have a sensititivity to iodine. The doc said the largest concentration of iodine is found in shellfish, but is in all seafood,and to even watch out eating salted chips or licking salt off a margarita glass. Well, I didn't believe it and had some nice crab salad before my salmon, and you wouldn't believe how that set my rash off!

Wow, I've never heard that about the seafood before! Fortunately I won't eat shellfish anyway (looks gross in my opinion, and I can't eat anything I don't like the look of :rolleyes: ), and I use only sea salt, not iodized table salt. I eat fish, but not a lot of it. I can't eat chips, either (I wished I could, though).

You learn something new every day!

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