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Marie_Mtl

Dermititis Herpertiformis?

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Hi,

I am brand new on this forum and, so far, I am loving this place!

I have quit gluten and dairy 2 and half months ago, after someone suggested I should give it a try. I had been sick for years and my GP, allergist and dermatologist couldn't figure out what was wrong with me for the life of them... They tried to "cure" me with creams and antibiotics, which seemed to only make things worst, especially the antibiotics... I have also been tested for MS, but it came back negative (thank God!). But the gluten and dairy free diet made me feel a whole lot better after only 3 days! I was SOOOOOOO happy while it lasted... For almost 3 glorious weeks, I was a new woman. Never felt this good... ever! Even my swollen glands, in my neck, were gone (still are)!!! I then read on gluten sensitivity and realised that my symptoms all could result from that (wasn't sure, at first, if it was the gluten or the dairy that made me sick). Then, my symptoms started coming back - with a vengeance... That's when I realised that I was not that good at avoiding gluten and that it would find it's way on my plate through foods I did not suspect contained it (it seems to be easier to control dairy intake than gluten). Anyhow, I went and got tested for gluten intolerance and I am waiting for my bloodtest results. Until then, I thought about posting a picture of my unbelivably itchy and burning rash, on my side (which is not, from what I understand, a typical spot to get dermititis herpetiformis). According to my allergist, it's not hives, although he doesn't know what it is. According to my dermatologist, it's rosacea (cause I also get it on my face and neck). According to my GP, it's all in my head! All I know is that when it appears, I take a close look at what I have been eating or drinking and, every time, I realise that there was some gluten in it. It's become my number one way to tell if there is gluten in any product consumed. So... I thought about asking you, real life specialists, what you think. Could this be dermititis Hepetiformis? Thanks a lot in advance... Many thanks, also, to whoever started this site. It brings me much solace to know I am not alone and to read things that make me go "I know!!!". Marie.

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It certainly could. If it's burning and unbelievably itchy, it sure sounds like it. DH "typically" shows up on knees, elbows, butt and scalp, but it can show up ANYWHERE. The first time my 16-year-old daughter showed me her "itchy spot" we thought her bra clasp was irritating the skin on her back. (though she also had the elbows and knees thing; we thought it was the dry, cold winter weather irritating it.)

I can't believe your dermatologist doesn't know about DH. Please ask the derm to biopsy it-- he needs to biopsy two samples: directly on a new lesion, then right next to it on clear skin, in order to get a readable biopsy. It took our derm 2 tries to get our daughter's biopsy done right (the first one was on an older lesion, and just one sample on the lesion itself, not next to it).

Since you have been gluten-free for a couple of months, any blood tests for celiac you have done might come up negative. However, if you're still having DH breakouts, most doctors will take a positive biopsy of DH as a confirmed diagnosis of celiac, without an intestinal biopsy. But you might want to do that, anyway, to see if and how much damage you've got going on in your gut.

Hope you find relief and lots of help here! And by the way, there is separate category for posting here, just about Dermatitis Herpetiformus. Just scroll down a bit on the main page.

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It sounds and looks like DH to me....and if it is, you should avoid iodine. For many of us DH sufferers, both gluten and iodine are necessary to cause an outbreak of DH. Things to avoid include seafood, iodized salt (so don't trust anything that already has salt on it, like chips, French fries, popcorn, etc.), asparagus, and dairy in certain parts of the country. For me, the elimination of iodine was even more important than the elimination of gluten--I was able to control the DH for years just by eliminating iodine only (because I didn't know I had celiac, and I'd made the connection to iodine).

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It certainly could. If it's burning and unbelievably itchy, it sure sounds like it. DH "typically" shows up on knees, elbows, butt and scalp, but it can show up ANYWHERE. The first time my 16-year-old daughter showed me her "itchy spot" we thought her bra clasp was irritating the skin on her back. (though she also had the elbows and knees thing; we thought it was the dry, cold winter weather irritating it.)

I can't believe your dermatologist doesn't know about DH. Please ask the derm to biopsy it-- he needs to biopsy two samples: directly on a new lesion, then right next to it on clear skin, in order to get a readable biopsy. It took our derm 2 tries to get our daughter's biopsy done right (the first one was on an older lesion, and just one sample on the lesion itself, not next to it).

Since you have been gluten-free for a couple of months, any blood tests for celiac you have done might come up negative. However, if you're still having DH breakouts, most doctors will take a positive biopsy of DH as a confirmed diagnosis of celiac, without an intestinal biopsy. But you might want to do that, anyway, to see if and how much damage you've got going on in your gut.

Hope you find relief and lots of help here! And by the way, there is separate category for posting here, just about Dermatitis Herpetiformus. Just scroll down a bit on the main page.

Thank you so much, Avalon, for your kind reply! Yes, I know, my dermatologist is far from being "all that". I think he is so busy doing botox and filling in wrinkles, that he doesn't have much time or interest in treating "real" patients (problem is that no other dermatologists in my area are taking in new patients. Seems like I'm stuck with him)... When I first went to see him, about 3 months ago, it was for a suspicious lesion, on my nose. At first, my GP (who is not much better, in fact) did not even want to refer me, telling me "it's only a blocked pore" (without even looking at it!). I insisted... Then, the dermatologist told me, in a very annoyed voice, that it was a "little nothing, that I picked at too much" (which I didn't). I insisted that I wanted a biopsy and he reluctantly obliged. Turns out it is a cancerous lesion... I am getting surgery in three weeks, to get it removed. Scary... I have a tiny little nose - not much skin to take off - I am scared I will end up looking like Michael Jackson... So, when it comes to my health problems, I feel like I have to do the investigative work and then DEMAND any test or treatment necessary (I wish I got paid for doing all that!)... That is why your help is SOOOOO appreciated! I am glad to know it is possible to get a biopsy on my skin lesions and that it could be used toward diagnosis. I had no idea! When I see him, for my surgery, I'll ask for a biopsy, the way you explained it. Sounds like a very good plan. I hope it will work, because that intestinal biopsy scares me as hell! If I can avoid it, I will!!! Thanks again, Avalon, and all my best to you and your daughter :)

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It sounds and looks like DH to me....and if it is, you should avoid iodine. For many of us DH sufferers, both gluten and iodine are necessary to cause an outbreak of DH. Things to avoid include seafood, iodized salt (so don't trust anything that already has salt on it, like chips, French fries, popcorn, etc.), asparagus, and dairy in certain parts of the country. For me, the elimination of iodine was even more important than the elimination of gluten--I was able to control the DH for years just by eliminating iodine only (because I didn't know I had celiac, and I'd made the connection to iodine).

Hi Rosetapper23 and thanks a lot for your reply! Wow, iodine, I would of NEVER suspected that! Feels like it just narrowed my food choices again (I don't eat meat, but lots of fish and seafood)... I am starting to think that I'll be left sucking on ice cubes by the time I am done evacuating everything harmful from my diet! Well, I guess it's worth giving the "no iodine" a try. Thanks a lot for pointing that out to me, I really appreciate it... I'll try to update as I go along...

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Try thyca.com for the low iodine diet. Any time I eat salty food I get a reaction. DH is very sensitive to cross contamination so you have to be really careful. Reactions can last a long time. You already know that though huh? Glad you found us. Hope your dermatologist listens, but I have found they don't like to be told what to do. 3 refused to biopsy me even though they were the "Chief of Dermatology" the only diagnosis was neurotic excoriation...because it was on my face, no one believed it was DH. Don't be discouraged if you don't test positive or if they refuse to test you. You can still do the gluten free and low iodine and heal yourself. They just don't know about this disesase and it is very sad...because a lot of people are miserable for years and truly need help. Anyway, you are here now and you will be able to figure it out. When your skin is on fire from a reaction you can use benzocaine creams...like Walgreens pain relieving ointment...it takes the sting out. I was eating a lot of fish and shellfish in the beginning. I can't even eat a shrimp now. I've read that we are supposed to be able to add iodine back in when the lesions are healed. I hope so. Good luck with the diet...it is so worth it to be free of the pain and itching. Check your make-up and shampoo and conditioner for gluten too. They are easily ingested and it only takes a tiny amount to make your skin flare again.

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