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

Desperate For Answers! New To The Rash "party"

Qb69

By Qb69
in Dermatitis Herpetiformis

Recommended Posts

Qb69 Newbie
Qb69
Posted

Hello everyone,

I have been on a nonstop search for answers since strange bumps/blisters began forming on my fingers and feet, in between the fingers and on top of the foot. Then fast forward a few days later, bumps begin to form on my two elbows. Now I am covered head to toe with a nasty super itchy, keep me up all night, never can sleep rash.

I found this site and open to any and all answers. Will be uploading pictures momentary...

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

Celiac.com Sponsor (A8-M):


Qb69 Newbie
Qb69
Posted
  • Author

This is within a span of 5 days from the initial mild bumps scattered across my body. To this full blow explosion.

http://i62.tinypic.com/x6igzc.webp

http://i61.tinypic.com/sdp8ir.webp

Any words of wisdom welcomed.

LauraTX Rising Star
LauraTX
Posted

Have you seen a doctor yet?  That should always be the first step.

cyclinglady Grand Master
cyclinglady
Posted

I am not a DH expert (since I have not experienced it), but previous posters have described it as being insanely itchy. So, it could be DH. Cold compresses can help. Do not take steroids (even topically) and search within this forum for proper testing procedures you can share with your doctor. It is tricky to get a skin biopsy. Continue to consume gluten until all testing has been completed.

I hope you find your answers!

Qb69 Newbie
Qb69
Posted
  • Author

Saw a doctor and he has no clue. The rash keeps slowly progressing and spreading, it has almost consumed my whole body. :(

squirmingitch Veteran
squirmingitch
Posted

Did you see a dermatologist? Do that & insist they do a dh biopsy. Make sure they do it right. Read threads on here for info. on how the dh biopsy is correctly performed, 

Meanwhile, try limiting iodine intake in your diet. Iodine for some reason is like pouring gas on a fire for most of us with dh.

Google Thyca.org for a low iodine diet.

SMRI Collaborator
SMRI
Posted

Saw a doctor and he has no clue. The rash keeps slowly progressing and spreading, it has almost consumed my whole body. :(

 

I'd call around and find a dermatologist that is experienced with DH and go there.  Make sure they know you are having major acute symptoms so they get you in faster!!  Do you have a major teaching hospital/clinic anywhere near you--that might be the best place to start.

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

Celiac.com Sponsor (A8-M):


Qb69 Newbie
Qb69
Posted
  • Author

Saw several drs and derms in the past weeks. All claim its contact dermatitis and that it will just go away. Its just getting worse as the days progress. But the itch has really calmed down. Still itchy but I can resist the itch now. In the San Diego area, major medical research hospital UCSD is in town.

SMRI Collaborator
SMRI
Posted

Have you changed your detergent, soap or anything that would bring this on?  I'm sure they asked you all of that but something is causing this.  It looks miserable. How about a new sun screen or anything like that?

Qb69 Newbie
Qb69
Posted
  • Author

Yeah, drs said contact dermatitis. But the fact that every day I wake up and its spreads to a new spot or grows in size makes me think its internal. Also given that its been so long makes me feel its a bigger issue than contact. :/ but im waiting on blood tests.

squirmingitch Veteran
squirmingitch
Posted

What bloods did they do?

GottaSki Mentor
GottaSki
Posted

Welcome QB!

Great to see you Squirmy...carry on ;)

GottaSki Mentor
GottaSki
Posted

Saw several drs and derms in the past weeks. All claim its contact dermatitis and that it will just go away. Its just getting worse as the days progress. But the itch has really calmed down. Still itchy but I can resist the itch now. In the San Diego area, major medical research hospital UCSD is in town.

Well...it helps when I read the entire thread. I live in San Diego and know UCSD very well.

You want to see Dr. Sheila Crowe, the director of UCSDs celiac center. Ask to speak with her assistant or advice nurse. The normal receptionist does not understand the need to fast forward possible DH biopsy.

If you run into the usual "next appt is in three months" ... Send me a PM and I'll see what I can do.

Edited to add:

Open Original Shared Link

Hang in there :)

squirmingitch Veteran
squirmingitch
Posted

Excellent GottaSki! Excellent.

Qb69 Newbie
Qb69
Posted
  • Author

Thanks for all the great advice!! I go to the dr tomorrow to review blood work, and will go from there. Thanks all!!

GottaSki Mentor
GottaSki
Posted

Thanks for all the great advice!! I go to the dr tomorrow to review blood work, and will go from there. Thanks all!!

Great.

Always ask for written or electronic copies of testing.

It can help you now....and trust me, it will help in your future health needs.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,202
    • Most Online (within 30 mins)
      7,748
    Nana Susie
    Newest Member
    Nana Susie
    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

    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.