Dermatitis Herpetiformis

[finallynotthatitchy]

It all started in April with itchy ankles, then all over my legs and wrists. Then it went crazy from there. I was scratching so much everyone else would start too! I had blood spots everywhere and antihistamines didn't help, neither did poison ivy products.I looked it up on the internet and thought that it could be DH, but I had never had poison ivy before and my husband had gotten it during this time. After six weeks, I went to my GP and was put on a steroid dose pack and steroid cream, I had to get more help I couldn't sleep and I would still get new bumps, it didn't help at all. The outpatient doc got me into see a dermatologist the next day who said i had a virus, and after a week of 60 mg prednisone, it was still spreading so he suggested I see an allergist soon because I was on a high dose and a virus would have responded. He said that DH is very localized and its mostly on the elbows.

After almost 10 days of 60 mg of prednisone that were tapered down, the allergist did blood tests, and everything was normal, my tissue transglutiminase IgA were 4.9 (<20 is normal) and my IgA levels were normal. The only thing elevated were my TPO thyroid autoantibodies. An allergist said that those antibodies couldn't be causing it. I saw 4 they each told me a different thing. They kept giving me steroid shots, prednisone and creams which I put on all the time. after 3 weeks of that most of it went away for over a week then came back mid July. The rash looked really different with all 4 though b/c of the steroids and how much I scratched. After eating the red parts of my skin would turn redder and I would get new tiny bumps there or in other places that were the color of my skin. The rash would not go away and the bumps kept coming, I itched all the time. My skin would smell like serum after scratching it so much it was disgusting I wanted to die sometimes,i was suffering and I loved my life before this!

I then saw another dermatologist, who thought it was DH he took 2 skin biopsies and put me on dapsone. The biopsy results said they could not rule out DH and said that contact dermatitis was noted, I have a propylene glycol sensitivy that was noted on a patch test which was in the steroid creams, he said my skin is probably hypersensitive now and that alot of people who they swear have DH have inconclusive biopsies!

This dapsone is very good, no more bumps and I only have the remnants of bumps. This is the only medecine that has ever provided this much relief and was able to stop the bumps from coming but I do still itch some! Not as intensely and not all the time.

My questions are these:

Did anyone else have such a hard time being diagnosed and their biopsies were inconclusive for it? How many biopsies did it take to get diagnosed?

-Has anyone had negative antibody screens while they had a bad breakout? Can dapsone interfere with the results (i'll take it again after 6 wks of eating gluten regularily then)? I read the actual autoantibody attacking the skin in DH is not tissue transglutimase but epidural transglutiminase, has anyone been tested for that one instead?

-I've been tired these last couple of days and I have noticed my appetite has decreased since being on the dapsone, is this normal since I have just started it? (My CBC was normal before starting and I'm not g6pd deficient).

-I've heard that DH responds really well to dapsone, what does that mean exactly? I noticed a big difference 2 days later, its been 6 days now is it normal to feel and still see the remnants of the bumps?

-I am a female, I stand a mere five feet 2 and almost tip the scales to 140, I am on 100 mg of dapsone, what are some other people's doses when they were first diagnosed or after a breakout?

-Also, is it really unusual to get it all over like I did? Has anyone had permanent scars from this? Of course mentally it will leave scars this is horrific, but I'm wondering about the physical ones.

They really need to do a study on this and suicide rates. I am sure people have gone crazy after this, thank God for my proper upbringing! Thank you so much I am sorry if I went on and on but I am desperate and I no longer trust doctors, especially allergists! Now I am questioning it since the biopsy did not rule it out. I didn't think being gluten free would be this hard but there are so many different names for gluten and I read it takes a long time to clear up. Mine might not ever go away if this isn't it and its contact dermatitis or something, and I happen to really love cinnamon buns and frosted shredded wheat. Its been hard staying off of gluten these past 2 weeks and I'm really angry I've spent almost 400 dollars in doctor visits, steroids and creams and the skin biopsies didn't diagnose it and it could have been done a long time ago with the first dermatologist.

[squirmingitch]

I'm on very limited time at the moment but will say some things now & be back later & tell you more okay?

Did you know that dh is called "the suicidal itch"? YEH! Yes, you can get it ALL over your body. No, it is NOT localized to the elbows (stupid doc). The steroids you were on caused the negatives in both the blood & the biopsy --- (stupid docs). DH is the only thing (except leprosy) which responds to Dapsone. You have DH. Can you post some photos --- have any from when it was bad? At any rate, what you describe is dh. I know it's driving you crazy. We all know how it drives one crazy! But please research Dapsone.

Yes, almost all of us have an almost impossible time getting dx'd with dh. That's why you see so many of us self dx'd. When we discover what it is we are not willing to continue eating gluten one moment more!!!!!!!!!!!!! And so many have been down the doctor misdiagnosis road time & time & time again!!!!!!!

Read this; it's a long read but will explain much:

http://www.celiac.co...-reading-on-dh/

Also --- read a lot of threads on this dh forum --- you will learn a lot from them & learn how to handle this stuff & what to put on it that helps.

I'll be back later & I'm sure others will be on here to give you advice.

Also, read this:

http://www.celiac.co...ns-of-dh-types/

And welcome to the board!

[squirmingitch]

Also, look at these:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

[finallynotthatitchy]

Also, look at these:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

Thank you for the reading material. I do have some pics, but it was a week on steroids but I'll post them tomorrow! It seems that I have thrown the cord to attach my camera to the computer away.

There have been studies that show that dapsone can help pemphigoid out, but I don't think it is an itchy skin problem and its pretty rare. Also your skin layers seperate. Its better to have this I suppose and it really isn't an autoimmune condition like Type 1 diabetes or rheumatoid arthritis where the anitobodies form against something in your body that you need and can't get back, like the beta cells in your pancreas. All you have to do is stop eating gluten and voila, its like it never happened!

[squirmingitch]

Thank you for the reading material. I do have some pics, but it was a week on steroids but I'll post them tomorrow! It seems that I have thrown the cord to attach my camera to the computer away.

There have been studies that show that dapsone can help pemphigoid out, but I don't think it is an itchy skin problem and its pretty rare. Also your skin layers seperate. Its better to have this I suppose and it really isn't an autoimmune condition like Type 1 diabetes or rheumatoid arthritis where the anitobodies form against something in your body that you need and can't get back, like the beta cells in your pancreas. All you have to do is stop eating gluten and voila, its like it never happened!

This IS an autoimmune condition. DH = celiac & celiac is autoimmune. And celiac can spur other autoimmune conditions such as insulin dependent diabetes & lupus as well as rheumatoid arthritis to name a few.

And well, I wish it was viola! But it can take 2 years or even more for the antibodies to get out of your skin & viola'. But it certainly isn't an overnight thing. We itch for a while. Some stop in 6 months & some go for years. Let's hope you are a "short timer" & I mean that sincerely.

Many of us find we have to go low iodine for a while. Some don't but many do. This is medically known to be a factor as well as NSAIDS making the dh flare. For low iodine see:

Open Original Shared Link

But you are right in the respect that we don't have to take meds for celiac. We simply don't eat gluten. I may not be hitting on all 8 cylinders tonight & may have misinterpreted some of the things you said so if I did please forgive me. We have just learned of a death in our family & I wouldn't be on answering you except I promised so I didn't want to leave you hanging.

Also there is a stiff learning curve to the diet. More reading for you.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Others will be on I'm sure to help. I'm sort of done in. I'm sure you understand.

[jlaw]

Hi, I also should not be here, but wanted to say I am listening and will be back.

squirming - so sorry for your loss. Thinking of you...

[squirmingitch]

Hi, I also should not be here, but wanted to say I am listening and will be back.

squirming - so sorry for your loss. Thinking of you...

Thank you jlaw.

To the OP, how are you doing? Do you have any questions? Are you still taking Dapsone & how's that working out for you? Does the doc have blood work scheduled for you while you're on the Dapsone? He should; it can cause liver problems & anemia & you need to be monitored while you are on it --- more frequently at first, then less frequently & then once in a while.