Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can Dermatitis Herpetiformis only appear once?

Randommuwa
 Share

Recommended Posts

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...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,087
    • Most Online (within 30 mins)
      7,748
    More2Learn
    Newest Member
    More2Learn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Weird Symptoms

      By Scott Adams · Posted

      Your symptoms would not be typical celiac disease symptoms, but still could be related due to possible nutrient deficiencies.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      Everyday life

      By Scott Adams · Posted

      This is a difficult situation, and one that your employer may not take seriously. It's possible that they don't have a way to accommodate your issues, but I don't know much about your work environment. Obviously moving you to another work area would be ideal, but would or could they do that? If not, you might be stuck having to wear a K95-type mask at work to avoid breathing any particles, but they still could end up on your skin. Another alternative is searching for a new job.
    • Scott Adams
      Injera recipe ?

      By Scott Adams · Posted

      Here you go:  
    • Scott Adams
      Has anyone found Ozempic affected their symptoms?

      By Scott Adams · Posted

      This is an interesting theory, but it’s important to note that Ozempic, while it does slow digestion, doesn’t change the body’s immune response to gluten in individuals with celiac disease. Even if symptoms seem reduced, the immune system is still triggered, which can cause the same long-term damage to the intestines, regardless of symptom severity. Regarding sourdough bread, while it may have lower levels of gluten depending on how it’s made, it’s still not safe for people with celiac disease unless it’s explicitly gluten-free. The immune response to gluten in celiac disease is triggered by even tiny amounts of gluten, so adhering strictly to a gluten-free diet is essential for health and healing. If you suspect Ozempic or other factors are influencing your symptoms, it might be worth discussing with your healthcare provider or a specialist to ensure you’re fully addressing your health needs.
    • Scott Adams
      On the cusp of facing a new life of managing a life with Celiac Disease

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. Re: tTG-IgA:    
×
×
  • Create New...