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

Help! Dd W/major Rash After Iodine In Hospital


climbmtwhitney

Recommended Posts

climbmtwhitney Apprentice

Need some help from the experts.....

My 10 year old daughter just had major surgery on her leg. Yesterday, day 4 in the hospital, she woke up and said, "Mom, I think I have bed sores all over my back." I looked and she had a major, inflamed, angry rash about 7" by 7" on her back. Very, very painful and a little itchy. The doctors determined that the rash area was cleaned with an iodine solution before her epidural. They think she might have an iodine allergy. I'm wondering if it's really a DH rash that reacted to the iodine--like an old-fashioned iodine patch test for Celiac rash. The doctors said that was also possible. She is mildly gluten intolerant. We let her have some gluten in the hospital just to try to get her to eat something. (Tsk. Tsk. I know.) She's very, VERY picky and wouldn't eat the gluten-free pasta they offered and we couldn't bring all her meals from home.

Do you think I have to have her tested for Celiac now? She's never had a rash a day in her life until now. I read that an iodine allergy is extremely rare. I also know that DH is rare. I have Celiac as well as one of my other children. What do you think? Oh, BTW, we're home now and the rash has not improved at all. Benedryl and the creme they prescribed have done squat. It's still super angry looking, it just doesn't hurt as much.

Thanks for your help!

Jillian


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



Celiac.com Sponsor (A8-M):



YoloGx Rookie

I don't think DH is as rare as you think--esp. if you have celiac! Its simply another way it shows itself... By all means have the test since the docs are alerted. And whether or not it is positive, I would take her off the gluten.

cassP Contributor

ya, DH is not "rare".. i think it's around 20% of Celiacs will get this. i didnt get it till 3 months ago! it is only now starting to fade

you should most definitely be testing all your children if you have it... just figure out what you need to have them do as far as gluten challenges so the tests can be accurate.

captaincrab55 Collaborator

For DH, it's best to see a Dermatologist while the blisters are filled with fluid.. They can do a biopsy and have results in two weeks...

climbmtwhitney Apprentice

Here's the thing.....we did the Celiac blood test on her when she was 8. Negative. Her stool testing showed that she was gluten intolerant and a double DQ1 genetically. So, we had her go gluten free with the rest of the household. Over the last 2 years she occasionally ate gluten such as when she was dining out with a friend. Now I'm wondering if I need to open the can of worms again and re-test her. If perhaps it's possible that things have changed and she's developed DH. Maybe the traumatic surgery put her over the edge? Or maybe it's too far fetched and I should just assume it's an iodine allergy. I did read that iodine allergies are often misdiagnosed and are really other things. Hmmmm. Help!

cassP Contributor

Here's the thing.....we did the Celiac blood test on her when she was 8. Negative. Her stool testing showed that she was gluten intolerant and a double DQ1 genetically. So, we had her go gluten free with the rest of the household. Over the last 2 years she occasionally ate gluten such as when she was dining out with a friend. Now I'm wondering if I need to open the can of worms again and re-test her. If perhaps it's possible that things have changed and she's developed DH. Maybe the traumatic surgery put her over the edge? Or maybe it's too far fetched and I should just assume it's an iodine allergy. I did read that iodine allergies are often misdiagnosed and are really other things. Hmmmm. Help!

im 38 years old, and even tho ive experienced every gut symptom, and excema & hives, & psorasis & dandruff, and depression/anxiety.. hypothyroid.. etc etc... i just now got my FIRST episode of DH- after 38 years. i tried to do the Iodine patch test- but i could only leave the iodine bandaid on for an hour- the burning was unbearable- i even burned off a little skin. even tho it was just an hour- i got a few more blisters.

i had already been 100% gluten free for a few weeks before i got the DH.. but i still eat a lot of corn byproducts & iodine. it's been about 3 months... and with a little silver ointment its starting to fade.

i dont know what your kids rash looks like- but it could very possibly be it. unless what your kid has is a burn.. ????

like said above- it would be a great idea to go to a derm and get it biopsied NEXT to the lesion... if that comes back positive- you dont have to worry about any sickening glutening challenges, or endoscopies- cause you would have your "positive" with the DH (IF thats what it is)

tarnalberry Community Regular

Iodine is a necessary "ingredient" in a DH outbreak. So, if she's been getting some gluten, and then had iodine introduced as well, yes, it could certainly by DH. Since she's tested negative and hasn't had it before, it's certainly worth checking to see if it is an iodine allergy (because she'd want to know that for medical reasons) but the sores can also be biopsied (around them, not in the center) to look for DH. No reason not to look at both.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,792
    • Most Online (within 30 mins)
      7,748

    Ann Marie 50
    Newest Member
    Ann Marie 50
    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

    • nanny marley
    • Scott Adams
      Very interesting--thanks for sharing that study!
    • Scott Adams
      Let us know how things turn out, and good luck!
    • Wends
      https://onlinelibrary.wiley.com/doi/10.1111/joim.70025 Very recent (September 2025) Finland study may be of interest. Borderline negative and low positive ant-TTG, with negative and positive EMA tests in patients diagnosed with Celiac Disease.
    • nanny marley
      Thanks for the list too makes me realise why I still get symptoms after cutting gluten , all that reading has just made sense to why I'm still struggling , thankyou Scott Adams very insightful , I've been baking to and there is xanthum gum in the flour , I understand now why I still have issues with that too, and ive had to cut dairy also , i had a terrible flare few months ago and my throat also was very irritable and I had sinuses issues all makes sence 👍
×
×
  • 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.