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

Support/help

atibbs

By atibbs
in Dermatitis Herpetiformis

Recommended Posts

atibbs Rookie
atibbs
Posted

Anyone out there from the Portland/Vancouver area?,

If so any suggestions on Doctors, Im getting sick & tired of

the so called doctors I go to, that tell me it's probably some

deodorant, shampoo, laundry detergent causing my rash......... :angry:

I found out about gluten intolerance all on my own doing some research, but I really don't have a definate answer which I want! :unsure:

so if anyone knows what else I can do, I'd be very happy :D

I'am the only one in my family who has these symptons, so I don't know!!!

I'm just really frustrated :angry:

  • 4 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraZ Rookie
LauraZ
Posted

Have you had any success going gluten-free? I had no luck with conventional doctors either -- told me it was just a garden-variety dermatitis and to put betamethasone on my scalp (red and oozy), and topical steroids around my eyes (which were crusty and swelling) and on my neck (which was beet red). I had no idea it was diet-related until a friend of mine recommended going to a naturopath. The naturopath gave me the ELISA blood test that showed high reactions to wheat gluten and gliadin. The celiac test was negative, but I went gluten-free anyway and sure enough, everything cleared up. If I accidentally get some gluten (did you know that imitation crab has wheat flour in it??) it comes back, but I just stick with being gluten-free and it goes away again.

The best thing about going gluten-free to resolve these problems is that you're not trying an experimental drug so there is no danger. You have nothing to lose and everything to gain by trying it.

Good luck!

tarnalberry Community Regular
tarnalberry
Posted
Anyone out there from the Portland/Vancouver area?,

If so any suggestions on Doctors, Im getting sick & tired of

the so called doctors I go to, that tell me it's probably some

deodorant, shampoo, laundry detergent causing my rash......... :angry:

I found out about gluten intolerance all on my own doing some research, but I really don't have a definate answer which I want! :unsure:

so if anyone knows what else I can do, I'd be very happy :D

I'am the only one in my family who has these symptons, so I don't know!!!

I'm just really frustrated :angry:

If you think it's DH, call around to dermatologists and ask them if they have deal with any celiac patients that they've done skin biopsies on. No reason not to call around first; you're shopping for a service.

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
      131,815
    • Most Online (within 30 mins)
      7,748
    Mackenzie whitley
    Newest Member
    Mackenzie whitley
    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.