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Help! Dd W/major Rash After Iodine In Hospital

climbmtwhitney

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climbmtwhitney Apprentice
climbmtwhitney
Posted

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

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YoloGx Rookie
YoloGx
Posted

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
cassP
Posted

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
captaincrab55
Posted

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
climbmtwhitney
Posted
  • Author

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
cassP
Posted

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
tarnalberry
Posted

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.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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