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Can Dermatitis Herpetiformis only appear once?

Randommuwa
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Randommuwa Apprentice
Randommuwa
Posted

Since I've had blood work come back positive I've been looking into celiacs disease a bunch. When looking into Dermatitis Herpetiformis, it reminded me of a rash I had a few years ago. Like it looks exactly the same, and they had an awfully hard time diagnosing the rash. I got like 3 different and wrong diagnoses and now I'm sat here wondering if that's what it was? Is it possible to only have one outbreak? The symptoms of it matched up too, it was unbelievably ichy, blistered and burned. I had a biopsy of it done so I don't know if the description would be of any indication if it could have been or not. Thanks! 

  • 2 weeks later...
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Granny Juju Newbie
Granny Juju
Posted

I have it now. On my scalp , legs , buttocks and arms. I have been gluten free for three weeks and it is clearing up! I am so excited and happy! I was on antibiotics (2) and it did not help. Five different shampoos. I started getting it in December and it just got worse. 
julie 

Scott Adams Grand Master
Scott Adams
Posted

It's possible that what you had was your first DH outbreak, and if that is what it was it means that you were to keep eating gluten it is very likely that you will have more outbreaks. The locations and intensity of outbreaks can vary quite a bit from person to person. For example I would get it on a single spot on the back of my thumb, at least until the back of my hands and thumb got severely sunburned on a fishing trip (it never came back after that). 

  • 5 weeks later...
CeCe22 Explorer
CeCe22
Posted

 

On 7/14/2021 at 6:48 PM, Randommuwa said:

Since I've had blood work come back positive I've been looking into celiacs disease a bunch. When looking into Dermatitis Herpetiformis, it reminded me of a rash I had a few years ago. Like it looks exactly the same, and they had an awfully hard time diagnosing the rash. I got like 3 different and wrong diagnoses and now I'm sat here wondering if that's what it was? Is it possible to only have one outbreak? The symptoms of it matched up too, it was unbelievably ichy, blistered and burned. I had a biopsy of it done so I don't know if the description would be of any indication if it could have been or not. Thanks! 

it took over a year before they did biopsy on my rash and it took 3 times before they diagnosed me with DH. My TTA antibodies IgA was 162.3 (positive was > 15 U/ML) which was positive. The endometrial antibody IgA with reflex to titer was negative. Then I had a scope done by a GI and the biopsy was normal. Does this by chance mean I could be wrongly diagnosed with DH?  I have been on gluten free diet for almost six weeks. Still have rash. After 4 1/2 weeks of being gluten-free I went a week with no rash but now it is back. 😕can’t take dapsone because allergic to sulpha drugs. Dr put me on 100 MG on Doxycycline yesterday. Any helpful advice????

Scott Adams Grand Master
Scott Adams
Posted

I don't believe that you were misdiagnosed, because a diagnosis of DH does not require a positive biopsy of damaged villi in your intestines. Additionally, in Europe anyway, they are diagnosing celiac disease now when people receive a positive celiac antibody test that is 10x the level for celiac disease, which is true in your case:

 

CeCe22 Explorer
CeCe22
Posted
3 hours ago, Scott Adams said:

I don't believe that you were misdiagnosed, because a diagnosis of DH does not require a positive biopsy of damaged villi in your intestines. Additionally, in Europe anyway, they are diagnosing celiac disease now when people receive a positive celiac antibody test that is 10x the level for celiac disease, which is true in your case:

 

Thank you!  I guess I just keep hoping that it would be something else with an easy fix. 

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    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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