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Dh?

Crimson

By Crimson
in Dermatitis Herpetiformis

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Crimson Rookie
Crimson
Posted

I went to the hospital to have a swab taken. I hope they run the right tests. I have no idea what they'd test for. I asked specifically for a DH test. The Dr. didn't seem to get what DH actually is. I tried to explain it but I'm not sure I got my point across. Doctor's don't seem to like people who do their own research.

So, this turned up yesterday and started spreading down my hand.

0817091500a.webp

0817091501a.webp

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ang1e0251 Contributor
ang1e0251
Posted

Mine looked like that.

Crimson Rookie
Crimson
Posted
  • Author

I thought it looked like a less extreme version of the pics I've seen on the net. It is still spreading. And itchy. They tried to give me anti viral meds and steroids...ofcourse. Steroids for EVERYTHING. I've just been putting Benadryl Gel on them.

Were you tested? Do you know what to expect? The dermatologist that I made an appointment with for next Monday is supposed to have experience with DH. At least that's what the receptionist said.

I'm not trusting that the hospital is running the right tests. So, I went ahead and made the appointment instead of waiting for a referral of some kind.

I'm just very nervous about all this.

nasalady Contributor
nasalady
Posted
I thought it looked like a less extreme version of the pics I've seen on the net. It is still spreading. And itchy. They tried to give me anti viral meds and steroids...ofcourse. Steroids for EVERYTHING. I've just been putting Benadryl Gel on them.

Were you tested? Do you know what to expect? The dermatologist that I made an appointment with for next Monday is supposed to have experience with DH. At least that's what the receptionist said.

I'm not trusting that the hospital is running the right tests. So, I went ahead and made the appointment instead of waiting for a referral of some kind.

I'm just very nervous about all this.

I'm sorry that you're going through this :(

My husband's DH looks like that. The dermatologist is supposed to biopsy the skin in a few places....not on the actual eruptions, but next to them, on clear skin. They will inject you with a local anesthetic before the biopsy.

The drug that treats DH is a pill called Dapsone. It has lots of bad side effects but my husband took it because he was desperate! DH is horrible!! The Dapsone did help with the itch and it helped it heal faster. He also uses a topical steroid cream.

Good luck with everything!

JoAnn

P.S. there is a old-fashioned test for DH that involves putting iodine on your skin (iodine soaked bandaid?) that some people in this forum have tried. I think you need a strong solution. If you leave it for several hours and you have DH, you'll develop a bandaid-shaped patch of DH there! Ouch. Here's the thread:

https://www.celiac.com/gluten-free/index.php?showtopic=57732

Crimson Rookie
Crimson
Posted
  • Author

Thank you for your replies. I'm sorry that your husband had to take the meds. I hope the best for him and that he gets much better!

So, here is a pic of what my arm looked like after the Dr. in the er took a swab and the blisters were busted.

0820090747a.webp

And here is the pic of the iodine patch test that I did. I used a solution of 2.4 % on a band aid and left it on for a couple of minutes before I moved the band aid and left it on for about an hour before I couldn't stand it anymore. It burned like mad!!! I took the band aid off and it left a stain that was one huge blister and one very bad small blister the next morning. The blister broke and the skin came off almost immediately. It's now *as you can see in the pic a nice square patch of raw skin*... icky, to say the least. I'm keeping it covered with antibiotic ointment and a bandage until I can see what this dermatologist says tomorrow morning. He's going to think I'm a nut case for doing this to myself!

Anyway... two days after iodine band aid debacle..... you can even see where I have a rough patch where I had the band aid before I moved it. It also scabbed over and the skin flaked off this morning.

0823091426a.webp

ChemistMama Contributor
ChemistMama
Posted
So, here is a pic of what my arm looked like after the Dr. in the er took a swab and the blisters were busted.

A swab? You need a skin biopsy to properly diagnose DH. The doctor needs to biopsy near a blister, not the actual blister. However, your iodine experiment below pretty much cinches it...

I took the band aid off and it left a stain that was one huge blister and one very bad small blister the next morning. The blister broke and the skin came off almost immediately. It's now *as you can see in the pic a nice square patch of raw skin*... icky, to say the least. I'm keeping it covered with antibiotic ointment and a bandage until I can see what this dermatologist says tomorrow morning. He's going to think I'm a nut case for doing this to myself!

That is exactly what happened to me with the band-aid test. A huge blister, plus the other blisters nearby got bigger. My Dr. said "that's what I get for having a scientist as a patient, you're experimenting on yourself!!" :)

If you're still eating gluten, you should have a blood test to confirm celiac/DH, the University of Chicago has a great site to print so your Dr. knows which tests to run:

Open Original Shared Link

If you're itching, my doctor recommended Sarna lotion (the one that contains pramoxamine hydrochloride) to help with the itch and pain, it works rather well. nasalady below is correct, dapsone does work but the side effects are awful. Don't go gluten-free until you've had your blood tests and biopsy, then it's gluten free for you, m'dear! My condolences!! DH is awful.

Crimson Rookie
Crimson
Posted
  • Author

Thank you for the support. I really appreciate it! I will be checking that link as soon as I'm done here. TY!

Yea, I knew the Dr. at the ER had done it wrong.

But, I had said the last time that I broke out, I would go. So, I did. I did try to explain it to him. But, he had no clue what I was talking about. Again, I'm off to the dermatologist tomorrow morning. So, that's good.

I was gluten free for over a year. When this showed up, I started eating gluten again. The ball is rolling for me...I figure that I should because I would have to get more testing done. I will be making an appointment with a doctor that will take a month to get into see, so that should be enough time to get my IGA levels up enough to cause a positive blood test. Then I suppose it's off to the GI Doc...

I'm thinking instead of eating gluten foods that I may stay on my regular paleo type diet and just eat vital wheat gluten as kind of an additive to my food. I can't stand eating these foods. A few days of it and I feel like hell. Today I started taking wheat germ and swallowing down two table spoons of it with water after a meal. I'm not sure how much gluten is in that. So, tomorrow, I will be picking up the box of vital wheat gluten and doing the same with it. I just don't like glutenous foods. I should be able to keep the gluten reaction w/out having to eat the foods.

That should make it easier to switch back to gluten-free life. Just quit taking the vital wheat gluten.

I'm seriously curious if anyone has tried this on gluten challenge...

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captaincrab55 Collaborator
captaincrab55
Posted

Crimson, Just having that nasty rash, indicates that you came into contact with gluten. Do you know if you ate or handled something that contains gluten? I've met people that claim they can't even touch a slice of wheat bread without breaking out.

Crimson Rookie
Crimson
Posted
  • Author

haha Funny you should say that.... As stated, I had been gluten free for over a year. The only time I have trouble is when I come into contact with gluten. This one, as far as I can tell is because we had company over and had run out of paper plates to use for those who used buns *pretty much everyone but me* and used regular dishes. I washed the dishes and had the blisters the next day.

I know, should have known better.

*shrugs* live and learn, yes?

It's all good. I needed to do this.

Dan300 Newbie
Dan300
Posted

Hi Crimson, your picture of the Iodine band aid patch test looks exactly like mine when I posted may 3rd, it would be nice to see if this is a valid test by trying the same thing with some one who dos'nt have DH , all I know is I started having skin problems 30+ years ago , been seeing doctors about this for 25+ years , in march with the help of this forum learned about DH and started going GFD in april . blood test in may were negative ( 5 weeks GFD ) and dermatologist at the VA biopsied the lesion instead of a DIF test next to it. they said the DIF was to expensive and would only do it if they really thought thats what I had !!! they blew off my Iodine test as they still had my diagnosis as nuerotic excorations , same as 3 years ago when I refused antibiotics again----- the doctor asked me if I thought I new more than him.... I got copies of my medical reports and at my june check up asked the doc about my biopsie , she agreed with my reading that it was negative for infection, I then asked her if that means if I then must have an autoimune problem, she said oh no it must be your nerves ?????? at least I got her to blood test me for nutrition vit ,minerals ect , about 10 different things. only B1 was a little low so I'm taking thiamin. also at that check up I was much improved and they still dismissed DH as it did'nt present like classic hives? symptoms . this is at Hines VA in Chicago with most of their Doctors coming over from Loyola so they should know what they're doing. now almost the end of August and I'm about 95% cleared up, last break out a couple of weeks ago and I can count the lesions I'm still dealing with on one hand , of course the purple marks take much longer to fade , this is the best I've been in along time and my friends have commented that I look better. I feel like I had to be my own Dr House to get my own self Diagnosis as they seemed to resent my research . Sorry about the long response just tired of 25 years of dealing with the medical system and since I'm almost all "Healed " up on a GFD then I must have DH & Celiac ?? thanks Dan

Crimson Rookie
Crimson
Posted
  • Author

Hi, Dan. Sorry that you've had such a hard time with diagnosis. Reading some of the stories here, I'm sure you realize that you are not alone in this. I was just sticking with the self diagnosis until this happened. Might as well go through with it.

About the patch test:

My husband actually agreed to put an iodine soaked band aid on his arm too. And his did stain and burn a bit, but did not blister up like mine did. He has an outline of where the adhesive from the band aid was touching him, but that is it. I will have to take a pic of it and post it here too! The difference is pretty obvious.

Ok, I visited the dermatologist today. And he looked at my arm and hands and said that it looked like eczema.... until I showed him the ones on my knee and on the backs of my ankles, the pics that I've posted here and my lab results from enterolab. Then he said that it was possible but rare. He dismissed the patch test and told me that all I did was create a chemical burn. I wish now that I HAD printed off the information on the iodine induced DH! <_< I'm none too thrilled about that.

He told me to come in when I have active lesions... I can call and come in when they appear then he will take a biopsy. I'm a bit unconvinced that he is the right dermatologist for me.

So. I find that my first day with a tbsp of vital wheat gluten is proving to really mess me up!

It seems to be aggravating my headache and joint pain *which is now NOT going away with pain medicine now* and making me feel even more sluggish and tired. I'll get through this.

Next step, try to get some blood tests done.

Anyone know a good Dr in the Eastern WV or Cumberland, MD area???

Just need one that will at least humor me.

Crimson Rookie
Crimson
Posted
  • Author

Sorry it took so long. So, this is my husband's arm. He put the iodine soaked band aid on for one hour. *same amount of time that I did* This is what his arm looked like two days later. There's a ring where the iodine had stained the skin but no blistering or other skin reaction. It looked similar to the area where I had the band aid on my arm for a few minutes before moving it to where I left it for an hour. But I did get a rash in that area.

There's still no skin reaction on my husband a week later.

0826090653a.webp

nasalady Contributor
nasalady
Posted
About the patch test:

My husband actually agreed to put an iodine soaked band aid on his arm too. And his did stain and burn a bit, but did not blister up like mine did. He has an outline of where the adhesive from the band aid was touching him, but that is it. I will have to take a pic of it and post it here too! The difference is pretty obvious.

Ok, I visited the dermatologist today. And he looked at my arm and hands and said that it looked like eczema.... until I showed him the ones on my knee and on the backs of my ankles, the pics that I've posted here and my lab results from enterolab. Then he said that it was possible but rare. He dismissed the patch test and told me that all I did was create a chemical burn. I wish now that I HAD printed off the information on the iodine induced DH! <_< I'm none too thrilled about that.

He told me to come in when I have active lesions... I can call and come in when they appear then he will take a biopsy. I'm a bit unconvinced that he is the right dermatologist for me.

So. I find that my first day with a tbsp of vital wheat gluten is proving to really mess me up!

It seems to be aggravating my headache and joint pain *which is now NOT going away with pain medicine now* and making me feel even more sluggish and tired. I'll get through this.

Next step, try to get some blood tests done.

Anyone know a good Dr in the Eastern WV or Cumberland, MD area???

Just need one that will at least humor me.

Crimson, I really hope you find a good doctor/dermatologist! Preferably one who's had experience diagnosing DH!! I can't believe that doctor blew off the iodine patch test....that was the classic test for DH! :(

See the following article which shows a picture of the reaction of twin girls, one with DH the other with celiac disease but no DH, to the iodine patch test. Medical researchers use it, for crying out loud!!

Open Original Shared Link

Best wishes,

JoAnn

Crimson Rookie
Crimson
Posted
  • Author

Thank you, JoAnn. I have already printed the information on the iodine patch test and intend to take it to my next visit.

Yes, he blew it off. But he did agree to biopsy when I have fresh lesions.

So far, I've had small pimple like bumps that I end up scratching open either in my sleep or before I realize what they are. It took two weeks to really break out last time. So, I'm still on the gluten.

I put on a bit of weight at first *10 lbs in 4 days!* now it's falling off FAST. At this rate, I'm going to end up underweight again in no time. I got up to 125 and now it's dropping off at about two lbs a day. I'm about 5'4" and muscular because I instruct pilates and weight lift. I was able to build so much muscle during my gluten-free time...

Guess that's gone for now. I'm still strong, but I FEEL weak. Back to caffeine to make it through the day.

I intend to have blood tests run after another week or so of eating gluten.

I really should have done this all when I first got really really sick.... I just wasn't sure it was the issue until I went gluten-free. Once I did and felt so much better, I didn't want to go back.

Every day I say "I don't think I can do this again tomorrow" yet, every day, I make it.

It's bizarre to me.

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