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
      130,247
    • Most Online (within 30 mins)
      7,748
    Stephen of the West
    Newest Member
    Stephen of the West
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you so much.
    • knitty kitty
      Hypothetical question about antibodies

      By knitty kitty · Posted

      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
    • Zuma888
      Hypothetical question about antibodies

      By Zuma888 · Posted

      Thank you very much @knitty kitty! I'm glad you brought up the point about histamine. I have been taking an antihistamine after meals where I don't feel so good and never knew why it helped so much. At first I thought I might have a food allergy, but I recently did a food allergy test and I actually have ZERO food allergies. Regarding your last point about the stages of grief, are you saying it's likely that I have celiac? I have Hashimoto's BTW and I know for sure that gluten causes an autoimmune response to my thyroid as my anti-TPO and anti-Tg go up and my throat feels swollen. Could the symptoms be due to that autoimmune response?
    • knitty kitty
      Hypothetical question about antibodies

      By knitty kitty · Posted

      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
×
×
  • Create New...