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Does This Look Like Dh To You?

Melon

By Melon
in Dermatitis Herpetiformis

Recommended Posts

Melon Apprentice
Melon
Posted

Hi, All!

I was misdiagnosed with pityriasis rosea (PT) by my dermatologist. Biopsy came back as drug erruptions/arthropod bites/hypersensitivity to external allergen. Not fungal. The punch biopsy was of lesions (not surrounding skin). I'm trying to decide whether to get a DH biopsy.

My mother and niece have Celiac. I have no Serious GI symptoms. I had an endoscopy in 2010. No celiac, but positive for microscopic colitis. Can I have celiac now? Maybe a gluten issue?

Rash has been popping up for 5 months. I stopped a medication and stopped using essential oils (which I thought caused the rash). No relief. No visible biting bugs at home, and I am the only one in the household affected.

Do these photos look like DH? Clear liquid, somewhat symmetrical, pressure points (hips, buttocks) also elbows, legs, knees, arms, back of hands, and back. Itchy at first till popped. Itchy and scaly while healing. Darkened skin when done, not sure yet if they will scar.

Photos:

Open Original Shared Link

There were about 75 of them. They slowed for a week and are popping up again.

Thanks for any comments!

Oh, and I'm a 40-ish yr old/female.

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squirmingitch Veteran
squirmingitch
Posted

You should absolutely get a dh biopsy. A PROPER dh biopsy. Find a derm with experience. You don't have to have any other symptoms -- those of us with dh tend to either not have GI symptoms or have them much, much milder. With your mom & niece being celiac it's all too possible for you to. Yes, what I see looks like dh but then lots of things can but you have the tell tale blisters & that narrows the field considerably -- add to that your mom & niece --- I'd say you'll slam dunk it.

 

 

EAT GLUTEN UNTIL THE BIOPSY IS DONE!!!!!!! NO STEROID USAGE!

squirmingitch Veteran
squirmingitch
Posted

You know, you don't need any one's permission to go gluten free so you can skip the dx if you want to but you will probably never go back on gluten long enough to get an official dx later.

 

The other thing is ~~ do you have kids? They should be tested for celiac -- if they do not have the rash then they get the celiac blood panel.

Melon Apprentice
Melon
Posted
  • Author

You should absolutely get a dh biopsy. A PROPER dh biopsy. Find a derm with experience. You don't have to have any other symptoms -- those of us with dh tend to either not have GI symptoms or have them much, much milder. With your mom & niece being celiac it's all too possible for you to. Yes, what I see looks like dh but then lots of things can but you have the tell tale blisters & that narrows the field considerably -- add to that your mom & niece --- I'd say you'll slam dunk it.

EAT GLUTEN UNTIL THE BIOPSY IS DONE!!!!!!! NO STEROID USAGE!

Thanks, Squirmingitch. I'm trying to convince myself to spend the $600-ish (which was the cost of my previous allergy/bite/drug biopsy).

I tried going gluten-free, and made it 2.5 weeks until I was at a convention that had very little gluten-free available. Because I was still getting spots, I gave up. I think a diagnosis would make it easier to request gluten-free and get friends and co-workers on board AND get me to commit. I'm kind of a "need proof" for most things person. :)

Oh, and, no kids!

squirmingitch Veteran
squirmingitch
Posted

Okay, well I understand then why you need the proof positive. But you need to know that you need one heck of a good derm. I have seen WAYYYYYY too many dh biopsies screwed up b/c the derm did it wrong. And delayed in the 1st place b/c the derm said it was eczema, psoriasis, dermatitis, scabies, bed bugs & everything else under the sun EXCEPT dh. Consequently the patient suffered & suffered & suffered through all the myriad of meds prescribed which did nothing or even harm. 

I'm going to say it one more time.....

Eat a full gluten diet until the biopsy is done (& MAKE the derm do TWO in case one gets screwed up PLEASE!)

No topical steroids until the biopsy is done.

No oral steroids for 2 months before the biopsy.

No steroid shots for 2 months before the biopsy.

 

And a dx of dh IS a dx of celiac! NO other tests are needed to confirm. 

 

 

AND dh is a real b%$@#. Dh can & does wax & wane whether you're eating strict gluten-free or NOT. So when you DO go gluten-free, remember you can still have dh. This will be the case until ALL the antibodies get out from under our skin & we are all individuals so each one of us can have a shorter or longer experience. This stuff will screw with your mind like nothing ever has. You will second guess yourself at every crook & turn. Just remain committed no matter what.

 

Also, any siblings you have need to be tested for celiac. Any siblings or children of your niece -- her parents too & any other siblings your mom has and your mom's parents if either is still living. There is such a thing as "silent celiac" where one has ZERO symptoms but is still getting damage to the villi (& many other parts of the body) & the risk of cancer is still elevated etc, etc., etc. Your mothers siblings and their children should be tested. If they turn up negative, then they need to be re-tested every 2 years b/c celiac can present any time in a person's life.

Melon Apprentice
Melon
Posted
  • Author

Squirmingitch,

Thanks for the "celiac can present at any time" comment. My neg. intestinal biopsy 4 years ago makes me sometimes think I am off base on thinking it's DH.

My mom is in her 70s and one of 15 children. She suspects a couple of her sisters may have celiac, but they won't take her seriously. They are the "just eat a piece of pie, it's not going to kill you" type. :(

squirmingitch Veteran
squirmingitch
Posted

You are so welcome! :)  It truly can hit you at any time in life so one has to be aware of that & watch. The best thing to do is get tested every couple of years.

 

I'm so sorry your mom's sisters won't take it seriously. You can lead a horse to water..... :( When they get really sick maybe they will listen. Celiac can do so much damage! Not just to the gut but far beyond that. My body was rebelling on me. I truly thought I would be in a wheelchair for a few years by now or dead (& I'm 58). I had such pain as I can not even describe. It's gone now. All gone. 3 years gluten-free & it's gone. Also no more migraines. The list goes on & on. It tried to kill me. I am just so thankful I found this site & the good people on here helped me figure it all out. The doctors wanted to put me on antidepressants like that will make everything rosy!  :o I no longer belch like a sailor, no more 24/7 killer indigestion, no more bloat to the point I feel my body is going to just explode from the pressure -- like being 14 months pregnant. 

 

Celiac CAN kill. 

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Melon Apprentice
Melon
Posted
  • Author

I was using a corticosteroid cream last month (that may be why things have calmed down). Should I wait the full two months for a DH biopsy even if I have new bumps?

squirmingitch Veteran
squirmingitch
Posted

If you haven't used the cream in a month & don't use it on new places then you should be fine to get a biopsy. The biopsy is taken from fresh lesions so the old ones wouldn't be candidates for biopsy. There's more leeway on the topical steroid (corticosteroid) than on the oral or shots -- those stay in the system for a while. 

  • 8 months later...
Melon Apprentice
Melon
Posted
  • Author

Update: I was having a drug reaction from Trazodone. It started out of nowhere after years of successful use for sleep. Also had similar reaction to Ambien (generic). Blood test showed no celiac. 

squirmingitch Veteran
squirmingitch
Posted

60% of celiacs presenting with dh test negative on the celiac blood panel. A biopsy is taken ADJACENT to a fresh lesion NOT ON one.

 

I'm sorry about the Trazodone & Ambien. Unfortunately celiacs tend to develop allergies & that can be to drugs or foods or environment. 

JR Newbie
JR
Posted

I had a rash for 6 years. The punch biopsy always came back as contact dermatitis. Doctors tried organic clays, steroids and much more. It would SLOWLY get better. As soon as I stopped using the products, back it came. It was the dog treats. They had a teeny bit of wheat in them. I am that sensitive to touching wheat. Now, my husband does not kiss me when he drinks beer. I do not touch the beer bottles. I am so paranoid, especially about eating out. Supposed the chef touches bread and then my plate? I am doomed. I tried eating at Panera and asked the food preparers to put on fresh gloves. I still got VERY sick. They had already touched bread and then the salad components, thus contaminating the salad.

JR Newbie
JR
Posted

I almost forgot that I discovered that  handcream I was using had maltodextrin in it. This 'sugar' had to have been made from wheat. When I stopped using it, the rash vanished!!! We have to be so vigilant!!!

squirmingitch Veteran
squirmingitch
Posted

I almost forgot that I discovered that  handcream I was using had maltodextrin in it. This 'sugar' had to have been made from wheat. When I stopped using it, the rash vanished!!! We have to be so vigilant!!!

Maltodextrin, even when made with wheat is safe. The processing breaks it down. See:

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

I suspect you were reacting to some other ingredient in the hand cream.

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