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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,233
    • Most Online (within 30 mins)
      7,748

    JGBJ
    Newest Member
    JGBJ
    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

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...