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! 

Link to comment
Share on other sites
  • 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 

Link to comment
Share on other sites
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). 

Link to comment
Share on other sites
  • 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????

Link to comment
Share on other sites
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:

 

Link to comment
Share on other sites
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. 

Link to comment
Share on other sites

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
      125,810
    • Most Online (within 30 mins)
      7,748
    Niki111084
    Newest Member
    Niki111084
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      69k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Implications of glutening after repairing villi

      By RMJ · Posted

      It will not undo all of the healing.  If it did, diagnosis of celiac disease would be much easier!  To have enough damage to see on an endoscopy requires several weeks of gluten ingestion. 
    • Jean Shifrin
      Implications of glutening after repairing villi

      By Jean Shifrin · Posted

      HI, I am new to this and am still in 'repair' mode, which I know will take time. But I'm wondering if anyone knows what happens if you ingest gluten after you have made a lot of progress in repairing your villi. Does anyone know if you just have a short-term issue? Or does an accidental ingestion of gluten derail all the work you've done and set you back to square one? Thanks.
    • Scott Adams
      Is McDonald's Safe for Gluten-Free Orders?

      By Scott Adams · Posted

      Hydrolyzed wheat is wheat protein that has been broken down into smaller components through a chemical or enzymatic process called hydrolysis. This ingredient can be found in various products, including cosmetics, personal care items, and some food products. For people with celiac disease, hydrolyzed wheat is generally not safe to consume because it still contains gluten proteins, even in its broken-down form. Though hydrolysis reduces the size of these proteins, it doesn’t fully remove the components that trigger an autoimmune response in people with celiac disease. In food products, hydrolyzed wheat protein still poses a risk and should be avoided. With regard to the McDonald's French fries, the total amount of hydrolyzed wheat in the flavoring is small, and the amount that ends up in an order of fries is even smaller, and likely below 20ppm. McDonald’s states that the fries are gluten-free by ingredient and free from cross-contact with gluten-containing foods in their dedicated fryers. Third-party tests and statements by McDonald's confirm gluten levels are below the FDA threshold for gluten-free labeling (20 parts per million or less). So, while McDonald’s USA fries may be gluten-free based on testing, some people with celiac disease still approach them cautiously due to the past concerns and individual sensitivities.
    • trents
      Is McDonald's Safe for Gluten-Free Orders?

      By trents · Posted

      Here is an excerpt from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC82695:   Studies have shown that various peptidases of fungal, plant, animal, or bacterial origin are able to hydrolyze gluten into harmless peptides. According to SDS‐PAGE pattern, proteolytic enzymes hydrolyze gliadins (Heredia‐Sandoval et al., 2016; Scherf et al., 2018; Socha et al., 2019; Wei et al., 2018, 2020). Bacterial peptidase (Krishnareddy & Green, 2017), fungal peptidase (Koning et al., 2005), and prolyl endopeptidases (PEPs) (Amador et al., 2019; Janssen et al., 2015; Kerpes et al., 2016; Mamo & Assefa, 2018) thoroughly degrade gliadin fractions to decrease gluten concentration and influence celiac disease. Aspergillus niger derived PEP (AN‐PEP) were assessed in clinical cases for their impact on modifying immune responses to gluten in celiac patients (Lähdeaho et al., 2014). Guerdrum and Bamforth (2012) reported that PEP addition in brewing technology decreased the prolamin and all of the identified immunopathogenic gluten epitopes in beer production (Akeroyd et al., 2016). On the contrary, many of the recent investigations which employed enzyme‐linked immunosorbent assay (ELISA), mass spectrometry, and Western blot analysis reported that PEP did not thoroughly destroy the whole gluten proteins (Allred et al., 2017; Colgrave et al., 2017; Fiedler et al., 2018; Panda et al., 2015), which indicates that beers treated with PEP are not safe for celiac disease patients. Anecdotally, this excerpt supports what we hear from the celiac community on this forum with regard to "gluten free" hydrolyzed wheat products and that is that some still react to them while many don't.
    • Scott Adams
      Anybody else have a similar experience...theories welcome as its something which i dont really understand.....

      By Scott Adams · Posted

      There aren't good studies that have been done on celiac disease remission, and I'm going from a distant memory of an older post here, but the longest remission that Dr. Stefano Guandalini from the University of Chicago Celiac Disease Center has witnessed was ~10 years, then the symptoms of celiac disease and the damage came back. The real issue though, is that you still could increase your risk of various related diseases and disorders by eating gluten, but again, celiac disease remission has not been studies enough to know what health risks you might face.
×
×
  • Create New...