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. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    2. - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

    4. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

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

    • Total Members
      133,585
    • Most Online (within 30 mins)
      7,748

    canmich111
    Newest Member
    canmich111
    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

    • HectorConvector
      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
×
×
  • 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.