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

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.

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.

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.

  • 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.

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

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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      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.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      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).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      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...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748
    MaggieSc
    Newest Member
    MaggieSc
    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

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      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
      Terrible Neurological Symptoms

      By Jane02 · Posted

      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
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      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.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.