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. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    2. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    3. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    5. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

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

    • Total Members
      133,594
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
    • Known1
      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
×
×
  • 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.