Question about possible DH

[kenedalbnrot]

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 

[kenedalbnrot]

  On 10/11/2023 at 7:51 AM, 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 

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here is a link to some pics of the rash 

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

 

 

 

[trents]

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]

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]

  On 10/11/2023 at 5:05 PM, 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.

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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]

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]

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.

[kenedalbnrot]

  On 10/11/2023 at 9:36 PM, 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. 

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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