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 Celiac.com!
    eNewsletter
    Donate

Newly Diagnosed With Dh

Greg1

By Greg1
in Dermatitis Herpetiformis

Recommended Posts

Greg1 Newbie
Greg1
Posted

I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BlondeTexan Newbie
BlondeTexan
Posted
I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

Link to comment
Share on other sites
BlondeTexan Newbie
BlondeTexan
Posted

I have been experimenting with different ideas. When I get the rash, I find that it helps to drink a lot of plain water. Flush out the system. It takes me personally 3 days to "get over it" and my skin to return to normal. My sister has the herpes-like breakouts that looks like she has leprosy or something. But she eats gluten products and wonders why. :blink:

There are a lot of products on the market that use flour to maintain shelf life. Did you know the candy companies use a light dusting of flour on the inside of the chocolate candy bars to keep them from sticking once they are in the stores? Did you know products like sour cream and Pace brand pecante sauce have gluten in them to maintain shelf life? It's the "natural" ingredient used instead of synthetic preservatives.

Beef broth, multi-ingredient dry seasonings. So many things I had in my kitchen I had to pitch. I am sensitive to these "light" and "natural" additives so that's when I break out in the red rash. Heat and hot water from a shower make my skin "glow" with the red whelts. Since I walk 15 - 18 miles a week at the park trail, I hydrate well throughout the day and it seems to make a difference. And I have been on gluten free foods for a year this weekend. Hope this helps.

Link to comment
Share on other sites
  • 2 weeks later...
ajay Newbie
ajay
Posted
I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

This may be really obvious, but have you checked your soaps & shampoos? I have found that a lot of soaps (especially the ones that are mild, like aveeno) have wheat germ oil or other "wheaty" things in them. I know you don't eat them (well, okay, I'm assuming you don't eat your soap :) ) but I've found that those things can really bother me if I use them on my skin. Also, it is tough to catch all those hidden glutens, and if you've been pretty strict for a few days, you may have a lot more time to go before it really clears your system. Hang in there and stay gluten-free.

Link to comment
Share on other sites
lindalee Enthusiast
lindalee
Posted

I was diagnosed with DH in April of this year. I went to a regular doctor in Oct. of last year, he gave me a steroid cream, and off I went. Four tubes later and no relief I went to a dermatologist who took a biopsy from each arm and was diagnosed four days later. I took Dapsone for 1 month and everything cleared right up. I took my last pill May 13 and have the worst rash to date already. I thought I was gluten free but obviously I was mistaken. I have severly changed my diet again and done alot more reading about what are intolerable ingredients. Is there a way that gluten can come into our bodies through shampoo, lotion, deodorant, soaps etc? I have been gluten free as far as I know for only 1 day and am in severly bad shape with the rash and would like to know if anyone has an idea of how long it takes once gluten free for DH symptoms to begin to subside.

Thank you in advance for any help.

[/quote/ Mine was on my stomach and it took 4 months. I finally got some oil of oregano and put 1 drop in water and sipped it and a dot or 2 on my stomach before bed and it quit itching and cleared up after a couple of weeks. got it at www.bioinnovations.net it is the caspian sea (strong) kind. Hope that helps. LindaLee

Link to comment
Share on other sites

Archived

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

Go to topic listing

  • 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. plumbago
      - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed...
    2. trents
      - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    3. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    4. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    5. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • plumbago
      Lots of tests

      By plumbago · Posted

      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Lots of tests

      By trents · Posted

      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...