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Beware!

pugluver31902

By pugluver31902
in Dermatitis Herpetiformis

Recommended Posts

pugluver31902 Explorer
pugluver31902
Posted

Just wanted to tell you a story that might help you one day. I had some major foot surgery in October. About a week after my surgery, welts and blisters started appearing all over my body. I went back to the surgeon and he cut the cast off. All of my incisions were weeping and blistering, and my whole leg was one giant blistery hive. I was sent to MANY MANY MANY doctors, and no one could figure out what was wrong. I was given cream after medicine after treatment. Now on an unrelated (or what I thought was unrelated) problem, I saw a gastro doctor and was diagnosed with Celiac's. Now at this point I was still dealing with the blistering rash. It had spread to my entire body including my eyes. At this point I went to a dermatologist. He again prescribed another cream. While leaving his office I meantioned that this had been a rough few weeks for me, that I had also been diagnosed with celiac disease. Well the light bulb went off in his head and he told me the rash was DH. For my surgery, they had basically soaked my body in iodine and then wrapped me up in it and sent me home. Since I had to be in the cast for three months, the iodine was never washed off!!! That was in October, and I recently had to go back to the operating room to have my scars cut out and re-sewn bc they had healed so badly from having the DH. During that time I contracted a serious staph infection. The doctor told me that I probably was made more suseptible bc my immune system was overloaded from the Celiac's and DH. My white cell count and red cell count were way way off because of the infection too.

So all this brings me to a point. It may be helpful for some of you to get a med ID bracelet that has an iodine allergy on it. If you are ever (God forbid) in a serious accident and taken into surgery before your family is contacted, it would probably be most helpful for the surgeon to not cover you in iodine first.

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chrissy Collaborator
chrissy
Posted

what is the connection with DH and idodine----i have seen this mentioned before.

wowzer Community Regular
wowzer
Posted

Wow, that reminds me of my father. I remember when I was young he had surgery on his wrist and broke out in a bad rash. Maybe he went all his life undiagnosed as a celiac. My little sister was diaganosed at a year old. I'm thinking all the rashes that I had over the years were actually DH. It sure sounds like you had a horrible time. Thanks for the warning. I had a biopsy in the female area earlier this year. She asked if I was allergic to iodine and I said not that I knew of. I swear I could feel blisters popping for a couple weeks after that.

pugluver31902 Explorer
pugluver31902
Posted
  • Author

Oh yikes, I wouldnt want blisters down there! :o

phakephur Apprentice
phakephur
Posted

You had this rash before celiac diagnosis, right?

Does this iodine allergy persist after starting the gluten free diet? I thought DH was the dermatological manifestation of celiac, sometimes exacerbated by iodine, but you don't get the rash if you are gluten free.

casnco Enthusiast
casnco
Posted
Just wanted to tell you a story that might help you one day. I had some major foot surgery in October. About a week after my surgery, welts and blisters started appearing all over my body. I went back to the surgeon and he cut the cast off. All of my incisions were weeping and blistering, and my whole leg was one giant blistery hive. I was sent to MANY MANY MANY doctors, and no one could figure out what was wrong. I was given cream after medicine after treatment. Now on an unrelated (or what I thought was unrelated) problem, I saw a gastro doctor and was diagnosed with Celiac's. Now at this point I was still dealing with the blistering rash. It had spread to my entire body including my eyes. At this point I went to a dermatologist. He again prescribed another cream. While leaving his office I meantioned that this had been a rough few weeks for me, that I had also been diagnosed with celiac disease. Well the light bulb went off in his head and he told me the rash was DH. For my surgery, they had basically soaked my body in iodine and then wrapped me up in it and sent me home. Since I had to be in the cast for three months, the iodine was never washed off!!! That was in October, and I recently had to go back to the operating room to have my scars cut out and re-sewn bc they had healed so badly from having the DH. During that time I contracted a serious staph infection. The doctor told me that I probably was made more suseptible bc my immune system was overloaded from the Celiac's and DH. My white cell count and red cell count were way way off because of the infection too.

So all this brings me to a point. It may be helpful for some of you to get a med ID bracelet that has an iodine allergy on it. If you are ever (God forbid) in a serious accident and taken into surgery before your family is contacted, it would probably be most helpful for the surgeon to not cover you in iodine first.

OMG!!! I didn't know iodine was a problem! Sorry you had such a bad reaction. My skin itches for you! Thanks for the heads up. You have probably saved me months of missery and lots of money! I agree with you about the medical bracelet. Just wish they were more stylish. I know style shouldn't matter when it comes to such an important issue, but I am vain.

Michi8 Contributor
Michi8
Posted
OMG!!! I didn't know iodine was a problem! Sorry you had such a bad reaction. My skin itches for you! Thanks for the heads up. You have probably saved me months of missery and lots of money! I agree with you about the medical bracelet. Just wish they were more stylish. I know style shouldn't matter when it comes to such an important issue, but I am vain.

MedicAlert has a lot of styles to choose from: bracelets, watches, necklaces and sports bands.

I have not gotten a diagnosis of celiac or DH...don't know if I actually ever will. I did react to something after my second cesarean section though. Got blisters around the incision, underneath the adhesive tape. I originally thought it was a reaction to the adhesive (I don't typically react with blisters though), but wonder if it was actually from the Betadine. That stuff takes a while to wear off your skin...not surprising it would cause a significant reaction to someone who is sensitive.

Michelle

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lovegrov Collaborator
lovegrov
Posted

Some people have contact allergy to iodine that has nothing to do with celiac. If you have that, going gluten-free will not change it.

In addition, iodine can sometimes trigger DH outbreaks, especially when ingested (idoized salt, seafoods) and if you haven't gone gluten-free or have gone gluten-free recently. Eventually when you've been gluten-free long enough and the IGA deposits have dissipated, iodine will not cause outbreaks.

richard

ravenwoodglass Mentor
ravenwoodglass
Posted
Some people have contact allergy to iodine that has nothing to do with celiac. If you have that, going gluten-free will not change it.

In addition, iodine can sometimes trigger DH outbreaks, especially when ingested (idoized salt, seafoods) and if you haven't gone gluten-free or have gone gluten-free recently. Eventually when you've been gluten-free long enough and the IGA deposits have dissipated, iodine will not cause outbreaks.

richard

I have been gluten-free now for 5 years and in my case this holds true. Old school testing for DH was appling iodine under a bandage and then looking for the blisters. I switched to uniodized salt and avoided heavy iodine seafood for the first few years it took for the DH reaction to calm down but I am now fine with them.

I knew the deposits were gone when blisters were one of the last instead of the first things to show after an accidental glutening.

If you do have problems other than a skin reaction to iodine it may as Richard pointed out be an actual allergy in which case you should find out for sure through allergy testing.

pugluver31902 Explorer
pugluver31902
Posted
  • Author
You had this rash before celiac diagnosis, right?

Does this iodine allergy persist after starting the gluten free diet? I thought DH was the dermatological manifestation of celiac, sometimes exacerbated by iodine, but you don't get the rash if you are gluten free.

Right, you shouldnt get the rash if you are gluten free. I had my surgery three weeks before my diagnosis of celiac's, so thats why I reacted. I was just warning anyone so that if any one is newly diagnosed or doesnt strictly follow the diet, it is something to be aware of. Was just trying to help out. I was SO miserable, and I dont want anyone else to go through that. Plus, in the rare instance you are injured and taken to surgery and then sedated afterwards, you dont want to be covered in iodine and then given a wheat containing medecine!

wowzer Community Regular
wowzer
Posted

This whole mess started for me about a year ago. I thought I had a yeast infection that I couldn't get rid of. I had 2 biopsies, one showed eczema and the other spongiotic dermatitis (They don't know what you have) I have had many very itchy rashes and when I saw some pictures I really thought it was DH. My blood work came back negative, but I decided to try the gluten free diet anyway. I also had blisters on my arms that I was told was poison ivy according to the doctor. My husband who gets it easily said it wasn't. It has been a year since this itching started. It has calmed down a lot since going on the gluten free diet. I still am getting reactions, but not as bad. I do think getting allergy tested is my next step. I will ask them to do iodine. My son works at a pizza place. I'm wondering if somehow maybe he is leaving me a gluten trail. I just know that itching like that is not normal.

pugluver31902 Explorer
pugluver31902
Posted
  • Author

Good luck finding out the problem. It is not only annoying and frustrating, but after a while it really gets depressing trying to figure out what makes you itch. I hope you find out soon!

wowzer Community Regular
wowzer
Posted

What you went through sounds truly horrible. At least they figured out what you had. The more I think of it now, when I first read what happened to you it reminded me of a reaction my Dad had after surgery. It makes me realize that celiac could have run on both sides of my family. My little sister was diagnosed at a year. My mother said she had an uncle that had it. My family doctor has

been the only one that listened to me on this. I just have to figure out where I'm getting the gluten.

I am thinking that since I've eating gluten free, now if I some how get gluten I am more sensitive to it. My husband does a lot of the cooking and he isn't one to read labels. I've learned so much from this site.

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