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

Questions About Dh - Duration Of Eruptions, Frequency, Etc.


nasalady

Recommended Posts

nasalady Contributor

Hi,

I'm currently awaiting blood test results - my new gastroenterologist ordered the full celiac panel plus DNA testing through Prometheus. I'll get results on October 3rd.

In the meantime, I've been reading up on various celiac-related topics, including dermatitis herpetiformis. I realized suddenly that in May of 2007 I had a severe outbreak of a rash that started on the trunk and spread to my extremities. The doctor described it in her notes as: "Reddish, pruritic papules. Excoriated papules sparsely distributed over trunk and on forearms."

She never did figure out what it was. I was given a topical steroid cream and after several weeks it gradually went away. That's the only episode of such a rash that I can recall, but my memory is REALLY bad right now. I didn't even remember THAT rash until I re-read the doctor's notes (I recently asked for copies of my medical records).

Is it possible that this was an outbreak of DH? or would just one episode like that make DH unlikely? Thanks in advance....

JoAnn


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
Hi,

I'm currently awaiting blood test results - my new gastroenterologist ordered the full celiac panel plus DNA testing through Prometheus. I'll get results on October 3rd.

In the meantime, I've been reading up on various celiac-related topics, including dermatitis herpetiformis. I realized suddenly that in May of 2007 I had a severe outbreak of a rash that started on the trunk and spread to my extremities. The doctor described it in her notes as: "Reddish, pruritic papules. Excoriated papules sparsely distributed over trunk and on forearms."

She never did figure out what it was. I was given a topical steroid cream and after several weeks it gradually went away. That's the only episode of such a rash that I can recall, but my memory is REALLY bad right now. I didn't even remember THAT rash until I re-read the doctor's notes (I recently asked for copies of my medical records).

Is it possible that this was an outbreak of DH? or would just one episode like that make DH unlikely? Thanks in advance....

JoAnn

Maybe I need to re-state this:

1. Can DH happen once, for several weeks, and then go away and not come back?

2. Does DH look like little blisters and red bumps?

JoAnn

ravenwoodglass Mentor
Maybe I need to re-state this:

1. Can DH happen once, for several weeks, and then go away and not come back?

2. Does DH look like little blisters and red bumps?

JoAnn

1. You may very well see this reappear. When it does ask for a referral to a derm. They can biopsy the area beside the rash, make sure they don't do the rash itself. The antibodies are found in the intact skin next to the outbreak. If that rash is positive for DH you don't need to look any furthur on the celiac trail as that would be a firm diagnosis of celiac. In my particular case early on my rashes used to disappear for a couple months after a course of steriods but they would always come back. Eventually I would always have an outbreak somewhere. Hopefully others will respond with their experience as often there are differences.

2. Yes that is what DH looks like. It also leaves a distinctive purple colored scar that takes a long time to fade.

nasalady Contributor
1. You may very well see this reappear. When it does ask for a referral to a derm. They can biopsy the area beside the rash, make sure they don't do the rash itself. The antibodies are found in the intact skin next to the outbreak. If that rash is positive for DH you don't need to look any furthur on the celiac trail as that would be a firm diagnosis of celiac. In my particular case early on my rashes used to disappear for a couple months after a course of steriods but they would always come back. Eventually I would always have an outbreak somewhere. Hopefully others will respond with their experience as often there are differences.

2. Yes that is what DH looks like. It also leaves a distinctive purple colored scar that takes a long time to fade.

Thanks for the helpful reply! If the rash returns, I will definitely see a dermatologist.

JoAnn

mags Newbie

"They can biopsy the area beside the rash, make sure they don't do the rash itself. The antibodies are found in the intact skin next to the outbreak. "

I had a biopsy done wrong--of the lesion itself. Has anyone else had this happen and do you know what were the conclusions of the pathologist?

Mine said "lymphocytic infiltration with eosinophils consistent with urticaria or drug eruption" which my dermatologist explained to me means nothing.

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.