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- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis8SkinSafe
Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the... -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis8
SkinSafe
Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer... -
- Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis8SkinSafe
I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. G... -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis8
SkinSafe
Reply to Jackie, Thank you. I have not been eating any oats at all, but I am aware of a possible correlation. And I already rarely eat out, and not recently. So, whatever this is, I’m doing it to myself, somehow. 🤷♀️ -
- Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis8
SkinSafe
Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of ra...
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Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! -
Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed.
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By Jacki Espo · Posted
I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. Good luck. Wishing you the best. -
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Reply to Trent’s, Hi. Thanks for the welcome but I would truly rather to not have to be here. I’ve been researching everything I can about this dermatitis herpetiformis. I did read about Iodine, but to be honest I didn’t think it could be me. Maybe wishful thinking would be more likely. I already have so many eating issues from long term effects of radiation, that going gluten free is hard enough. Add to that low iodine and I may just as well not eat at all. I’ve never been a big meat eater. I eat it, as well as poultry, pork, etc., but small portions. I have not been able to eat most fruits due to the burning and stinging of my mouth, tongue and throat, and the sour taste. Same with condiments containing vinegar. Mayonnaise I can handle. Mustard, ketchup, salad dressings, pickles all burn like the dickens, as does fruit, esp citrus. I dip the tines of my fork into a mild dressing when eating salads. I am able to eat a banana as long as I drink water right away, with it still in my mouth. Strawberries taste like I poured salt on them. Fruit juices are a no go as well. And I use gravies and non-spicy sauces to moisten everything I eat. That leaves me with vegs, dairy and carbs. I’ve recently gone gluten free. But dairy! I love. It’s cooling and soothing to my burning mouth. Milk, cheese, ice cream, eggs…all big in iodine. I am unable to swallow any pills whole any longer, so I have to crush or chew them and I have been mixing them in yogurt of late. I like most vegs, but I use butter on them. I don’t add table salt on anything, iodized or not. Carbs are pretty much self explanatory; soft, easy chew, easy to swallow. I’ve purchased gluten free versions, but have not even tried them yet. No desserts because of gluten. I like and would use peanut butter, though not frequently. I only am able to drink water. No coffee or tea because caffeine now keeps me awake. Tea leaves a squeaky dryness in my mouth, (as do apples). I can’t drink any carbonated drinks because the bubbles burn and sting my mouth and throat. Same thing goes with alcohol. No beer, wine or hard liquor of any kind. I have requested a serum iodine level to be ordered. I have a vitamin B12 level already ordered, and I am awaiting results of my skin biopsy. If this turns out to be iodine related, I don’t know what I’m going to do. Gluten free is bad enough - but it’s managable. Low iodine is another story altogether. I’m terrified. But I thank you for mentioning it and bringing it to the forefront of my mind from the back of it.
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