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

Looks like DH?

Porrin

By Porrin
in Dermatitis Herpetiformis

Recommended Posts

Porrin Rookie
Porrin
Posted

Hi everyone, i was tested for celiac twice, the first time was after 2 weeks of eating gluten every day (i was eating gluten free for almost a year) and the second was after about two months eating gluten, both came back negative in every antibody, but i've got this rash since i started eating gluten for the second test, wich is intermitent and very itchy, is on both my hands, i've never experience a rash like this and that lead me to belive it may be gluten related but since i tested negative idk... im going to try to push my doctor to ask for the biopsy anyway because i have many other symphtoms too and im deficient in vitamin D, A, and B12 + i have steathorrea, well this are the pictures of the rash

the one on my thumb is more similar to a blister, the others are still in development, but they are in te fingers of my two hands, itch like crazy and kind of come and go but never leave... any idea?

dedo1.webp

dedo2.webp

dedo3.png

dedo4.webp

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

You need to get a dh biopsy from a derm experienced in dh. The biopsy is taken form clear skin adjacent to an active lesion NOT ON one. You would need to be actively eating gluten just like a gluten challenge & that's probably why your blood work was negative. You hadn't been eating gluten long enough so the tests are just plain invalid. See:

Open Original Shared Link

Porrin Rookie
Porrin
Posted
  • Author
6 hours ago, squirmingitch said:

You need to get a dh biopsy from a derm experienced in dh. The biopsy is taken form clear skin adjacent to an active lesion NOT ON one. You would need to be actively eating gluten just like a gluten challenge & that's probably why your blood work was negative. You hadn't been eating gluten long enough so the tests are just plain invalid. See:

Open Original Shared Link

Its been a while since i started eating gluten every day, i eat a little before the first try and then the two weeks, + the time that has passed since the blood test i think 12 weeks or 11 on total, so idk why it came back negative, maybe im not celiac but im going to go for the biopsy to be sure, thank you very much for your information about DH, do you think it could be? for how it looks? im goin to see a dermatologist but they all really busy at this time of the year 

cyclinglady Grand Master
cyclinglady
Posted

Welcome to the forum.  Why did you go gluten free for a year?

Porrin Rookie
Porrin
Posted
  • Author
2 hours ago, cyclinglady said:

Welcome to the forum.  Why did you go gluten free for a year?

Thanks, i stopped eating gluten and lactose for a week because i was tired of feeling awful every day and i noticed an improvement almost intermediately, at first i thought it may be just something casual because for that week i was only eating fruits and vegetables so super healthy, and i thought that may be the cause of my health improvement, so i decide to reintroduce them and react bad to gluten, then i cut it off completely, i start to get better but i decide to get tested because of my family skepticism, the weird thing is that i have a patch on my knee of psoriasis gutata that never leaves, except when i was out of gluten for a long time, now i have it back, idk if psoriasis and gluten can be related tbh but it was a weird coincidence. 

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. cristiana
      - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Hi @KathyR37 and a very warm welcome here. I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana
    2. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    3. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    4. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    5. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748
    KTH
    Newest Member
    KTH
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.