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

Does this look like DH?

Michellelle

By Michellelle
in Dermatitis Herpetiformis

Recommended Posts

Michellelle Rookie
Michellelle
Posted

Hello everyone..... Does this look like DH? It’s real itchy, and even on both sides of my body. I’ve been diagnosed with everything from ezcema, to contact dermatitis, to now,  my third doctor for a third opinion who said it’s DH. She ran 4 different blood tests which all came back positive for celiacs. She did not do a biopsy. I have the rash on both elbows, both knees, both legs from the knees to the feet. I have started Dapsone and a gluten free diet, only one week in with no change, I have a referral for GI and I am seeing a nutritionist next week for deficiency in iron and vitiman d. Any ideas? Thank you so much. 59ee5b623c8ed_IMG_23582.webp.1bd5d1ccdfa34b3a6a94249220fd51e3.webpIMG_2356.webp.712168bbc1540128222a7b069b8354ff.webpIMG_2355.webp.461bbaab8b757adf9d43b471fe150dda.webp

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

Celiac.com Sponsor (A8-M):


Victoria1234 Experienced
Victoria1234
Posted

Looks a lot like mine did. Does it ever go away? Mine would sometimes go away (at least the bumps) and turn purple ish. Thought my skin would never be normal again. Is the red part where you scratched it bloody? I did too.

took quite a while gluten-free to go away. Even a crumb would bring it back at first. It seemed to take forever to get over it. It was less than a year but more than 6 months.

what were your blood test results? Feel free to post them here so we can help you out.

make sure to follow all our beginner tips to avoid cc. I'm sure you want your dh to go away as fast as possible.

Michellelle Rookie
Michellelle
Posted
  • Author

Hello, thank you for responding. Here are the lab results.                           

    Range

  Endomys Ab Ttr    1:320  *@  [<1:10]

Range

  Gliadin IgG Ab    128  H@    [0-19]        Units

  Gliadin IgA Ab    204  H@    [0-19]        Units

Range

  TTG IgA           >100  H@   [0-3]         unit/mL

The doctor said there was no need for a biopsy, since I had been using steroid ointments with no luck, and I also had a patch test done with an allergist with no luck. My allergist told me with out a biopsy it can’t be DH for sure so to continue avoiding fragrance which I had an allergy too. The rash does almost go away, the bumps take forever, like a few months. Maybe because I keep scratching....  but before it clears up all the way it blows up all over again.

I’ve made some big changes real quick. Hoping to learn how to avoid cc by seeing the nutritionist. I have read that it can take forever to heal on diet alone. We’re tou also taking dapsone? I’m currently on 25 milligrams. I will also look into beginner tips so I can take care of myself the best I can. 

 

Thank tou for realinding. :)

Victoria1234 Experienced
Victoria1234
Posted

I don't remember if I used dapsone anymore. It was 10 years ago, lol. I remember them trying lots of things. My dermatologist wasn't the smartest as they dx. me with dh but didn't tell me that meant celiac. Still annoyed by that. 

Your blood numbers look pretty conclusive!

do you have any other symptoms? Some people with dh don't have many other symptoms. I had super bad gut pain along with my dh.

Michellelle Rookie
Michellelle
Posted
  • Author

How long have you been free of DH? Did you have damage to your small intestine as well? How do you avoid cc? Do you still enjoy eating out? I am only putting things together since I’ve been diagnosed. I have had this rash for a year..... but I have always had slight symptoms. Stomach aches, gas, constipation... lately sore joints. I’ve had all kinds of blood work. For RA, ANA, Thryoid, HIV, and more. Celiacs was the only culprit to date. I have seen three different doctors this year and I have had close to 15 appointments. I feel like I finally have the right answers. I am happy I’m not in this alone. 

squirmingitch Veteran
squirmingitch
Posted

Go to the coping section & pinned at the top is the Newbie 101 which will tell you how to prevent cc. Sorry, that's all I have for tonight as it's been a long, long day for me & I am more than ready to turn in. I'll respond further tomorrow.

I'm sooooooooo glad to hear you finally have an answer!!!!! 

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. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    2. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    3. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    4. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
    5. trents
      - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748
    Kathy N
    Newest Member
    Kathy N
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.