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Question about possible DH

kenedalbnrot

By kenedalbnrot
in Dermatitis Herpetiformis

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kenedalbnrot Newbie
kenedalbnrot
Posted

Hello everyone,

I am 29 years old white male. I have recently went gluten free since I had a rash that was really bad for almost a year. I recently got another rash on my elbow right before going gluten free like 3 weeks ago.  I feel like it’s dermatitis herpitsformous. I have also had diarrhea and abnormal bowel movements for years. I went to a dermatologist about 9 months ago they said it was eczema on my legs and groin. Well fast forward I have cut gluten out of my diet not because I think I had celiac but because it was maybe something causing the rash well it started to clear up in about 2 weeks gluten free. I have a appointment with my doc on the 20th and have been staying gluten free my question is it possibly celiacs? is this common I will also have a link to the images of my rash. I have had a lot of health problems lately and lost like 30lbs in the last year not like me at all. Usually don’t gain or lose more then a couple pounds 

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kenedalbnrot Newbie
kenedalbnrot
Posted
  • Author
6 minutes ago, kenedalbnrot said:

Hello everyone,

I am 29 years old white male. I have recently went gluten free since I had a rash that was really bad for almost a year. I recently got another rash on my elbow right before going gluten free like 3 weeks ago.  I feel like it’s dermatitis herpitsformous. I have also had diarrhea and abnormal bowel movements for years. I went to a dermatologist about 9 months ago they said it was eczema on my legs and groin. Well fast forward I have cut gluten out of my diet not because I think I had celiac but because it was maybe something causing the rash well it started to clear up in about 2 weeks gluten free. I have a appointment with my doc on the 20th and have been staying gluten free my question is it possibly celiacs? is this common I will also have a link to the images of my rash. I have had a lot of health problems lately and lost like 30lbs in the last year not like me at all. Usually don’t gain or lose more then a couple pounds 

here is a link to some pics of the rash 

https://www.icloud.com/sharedalbum/#B0W5oqs3qrG9qZV

 

 

 

trents Grand Master
trents
Posted

Welcome to the forum, kenedalbnrot!

The pic in the lower left corner of the group definitely looks like it could be DH because of the blisters/pustules present.

You should not have started the gluten-free diet until all testing is over. You should be consuming at least 2 slices of wheat bread daily, or the gluten equivalent, for 6-8 weeks before the blood draw to test for antibodies. Your GI symptoms certainly align with celiac disease.

kenedalbnrot Newbie
kenedalbnrot
Posted
  • Author

Totally agree, I have just been testing different things with my diet and noticed that it has been working cutting it out. I am certainly sure I will be told to consume gluten again and wish i figured it out before I cut gluten out of my diet :(. My doctor told me to just keep doing whatever im doing until my appointment. After my research I am sure they will let tell me to consume gluten again. thanks for some of the confirmation I think it is DH not sure thanks for the input super appreciated, seems to be a great community on here.

trents Grand Master
trents
Posted
28 minutes ago, kenedalbnrot said:

Totally agree, I have just been testing different things with my diet and noticed that it has been working cutting it out. I am certainly sure I will be told to consume gluten again and wish i figured it out before I cut gluten out of my diet :(. My doctor told me to just keep doing whatever im doing until my appointment. After my research I am sure they will let tell me to consume gluten again. thanks for some of the confirmation I think it is DH not sure thanks for the input super appreciated, seems to be a great community on here.

Many of us will tell you that many or most primary care physicians are relatively uninformed when it comes to advising their patients about gluten disorders. I wish I had a buck for every person joining this forum whose physician did not warn them to hold off on the gluten free diet until all testing is complete. So, they start the gluten free diet ahead of testing and the tests comeback normal even though their symptoms scream celiac disease. This puts them in the netherworld of uncertainty, not wanting to commit to the rigors of gluten free eating ("Maybe it's just coincidence that I've gotten sick lately when eating wheat porducts.") yet feeling crummy when they don't.

Wheatwacked Veteran
Wheatwacked
Posted

A biopsy diagnosis of DH is a diagnosis of Celiac Disease.  Perhaps you could get a diagnosis via a dermatologist familiar with the proper technique.  

        Biopsy Sites  If dermatitis herpetiformis (DH) is suspected, take normal skin ~3mm. from the edge of a lesion, as well as serum studies for IgA-EmA by indirect immunofluorescence and tTG by ELISA for best results. 

trents Grand Master
trents
Posted

Wheatwacked's suggestion is valid. No other known cause for DH besides celiac disease. And he is correct in that many or most derm doctors do not know how to properly biopsy for DH. Find one that does or at least take along instructions for him/her.

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kenedalbnrot Newbie
kenedalbnrot
Posted
  • Author
5 minutes ago, Wheatwacked said:

A biopsy diagnosis of DH is a diagnosis of Celiac Disease.  Perhaps you could get a diagnosis via a dermatologist familiar with the proper technique.  

        Biopsy Sites  If dermatitis herpetiformis (DH) is suspected, take normal skin ~3mm. from the edge of a lesion, as well as serum studies for IgA-EmA by indirect immunofluorescence and tTG by ELISA for best results. 

Thank you for sharing this I will talk to my doctor about it here soon for sure. I had a biopsy don’t a while back near my groin like 9 months ago but not my elbow. They just said it was eczema finally going away after I cut gluten. I have a doctors appointment here soon I’m sure I’m going to have to eat gluten again glad to finally be getting answers it feels like. Also I am starting to feel way better

  • Scott Adams changed the title to Question about possible DH

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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