Jump to content
  • 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

Dh - Does It Only Come With Glutening?


mmaccartney

Recommended Posts

mmaccartney Explorer

For those that have DH.

Do the skin lesions/blisters only appear when you have been glutened? Or is there some level/amount of lesions/blisters that are always present even if you are gluten-free?


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



Celiac.com Sponsor (A8-M):



glutenfreenew Rookie

i have severe dh and i used to think that i was being glutened everytime i had a break out and couldnt pinpoint what caused it . i come to find out that your body takes years to rid itself of the gluten deposits in your body and breakouts just happen. sometimes stress can bring on mine. i am completely gluten free and very careful but unfortunately the breakouts still come and go. they have been a lot less severe each time. Hope thats helpful

  • 2 weeks later...
SissySue Newbie
For those that have DH.

Do the skin lesions/blisters only appear when you have been glutened? Or is there some level/amount of lesions/blisters that are always present even if you are gluten-free?

I never even knew about gluten until my latest outbreak, and now I have started a gluten-free diet based on the information I have learned about its association with Celiac disease and lymphoma. I always thought (and still do) that my "trigger" is stress. Though I am not very expressive emotionally, I find my skin is a "barometer."

My first year of college my dermatologist gave me samples of Atarax; it was like "a miracle!" Anytime I have an outbreak I reach for the Atarax or the telephone to have my physician call in a prescription for me.

I had been outbreak free for 27 year, and a couple of weeks ago I got this rash that initially I thought was from maybe petting my cat, who runs through poison oak; it took about a week for me to realize this was not poison oak but my old friend DH had returned. I asked for a prescription to be called in for 100 mg Atarax; Wal*Mart was told they could give the generic, so they only had 50 mg tablets of the generic; I took loading doses of 200 mg for the first day and slept almost 24 hours, but I have dropped it down to 100 mg every four hours yesterday and today, and the rash is almost gone, and has not been itching.

I have not tried Dapsone; after reading the side-effects, I think I'll stay with something that I know works and does not have the long-range sid-effects.

ravenwoodglass Mentor

I had severe DH from childhood. I was a constant oozing mess. After going gluten-free it actually took about 2 years for the outbreaks to stop. For me even the smallest amount of CC would cause new blisters or a reactivation of any that had almost healed. This lessened after about 6 months when a light bulb went off in my head ( I didn't have the folks here and their great amount of knowledge until I had figured it out on my own almost 2 years after diagnosis) and I started checking everything I touched or came in contact with. Still it would be the first sign of a glutening for over 2 years. Some of the worst offenders for me were cosmetics, shampoos and conditioners, art supplies and grain derived alcohols and vinagers.

Now I am 5 years into gluten free. My DH is now the last thing to appear when I get a good glutening, and even then the sores are small, singular and short lived. Oh and my hair grew back. It does take a long time to clear the deposits out of the skin, and IMHO we need to pay careful attention to when they appear and what we have eaten and come into contact with.

heathen Apprentice

i developed DH after starting the gluten-free diet. I don't notice that it's worse when i'm glutened, but it does flare with stress. Mine doesn't get oozy--only itchy.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - melthebell replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    2. - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    3. - melthebell posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Persistent isolated high DGP-IGG in child despite gluten-free diet

    4. - trents commented on Scott Adams's article in Winter 2026 Issue
      4

      Why Celiac Diagnosis Still Takes Years—and How to Change That

    5. - Jmartes71 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,498
    • Most Online (within 30 mins)
      7,748

    genliu
    Newest Member
    genliu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • melthebell
      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
    • trents
      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
    • Jmartes71
      Domino's and Mountain Mike also has glutenfree pizza.However the issue is the cross contamination. Not worth a few minutes of yum yums i n the taste buds with a painful explosion later.
    • Scott Adams
      I don't recall seeing "many people here recommending RO water," but reverse osmosis (RO) water is water that has been purified by forcing it through a very fine membrane that removes dissolved salts, heavy metals, fluoride, nitrates, PFAS, and many other contaminants. It is one of the most thorough household filtration methods available and can be especially beneficial in areas with well water or known contamination concerns. While RO systems also remove beneficial minerals like calcium and magnesium and may produce slightly “flat”-tasting water, most dietary minerals come from food rather than drinking water, so this is not usually a health concern for most people. Overall, RO water is very clean and safe to drink, and it can be a smart option where water quality is questionable, though it may not be necessary in areas with well-tested municipal water.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.