Can We Talk About Iodine?

[Blaze422]

Quick recap..

I used steroid creams so negative biopsy for DH May or not be accurate.

Migrating rash that was bilateral, non responsive to steroids and reactive to iodine. back, chest, arms, elbows, not in folds etc...and although my wife said it was exzema..I am convinced its not.

Itch however, only 4 on a scale of 10

Dapsone significantly decrease itchiness but has no taken it away.

Most of rashes as gone except low back and neck hairline. I no longer have to take 1/2 doses of antihistamines to get thru the day.

After.one month of dapsone (25 mgs every 6 hrs) I went off it and almost immediately started getting itchy and rashy again. Back on for another month with return to better skin.

That said, my dermatologist was disappointed that the dapsone hasn't been more effective. For that reason, the jury is still out on whether I have DH. My healing might be because of my diet, or might also be from dapsone.

[pricklypear1971]

When I first read about dh there was an article about dh and iodine on a reputable Celiac site.... The man had been gluten-free and on dapsone for a year, and had to lower /monitor iodine as well or he'd break out. So, I think your doctor is slightly ill informed on the nuances of dh.

I wish i had a link to that for you but I don't....

Anyway, the iodine is VERY telling. You don't have an iodine allergy (you would have known that already from what I've read). I searched everywhere and asked several doctors, point-blank, to tell me WHAT OTHER RASH RESPONDS TO IODINE. I never had another rash named.

There are a few things you must consider that is difficult in the beginning. It takes practice to be gluten-free. Really, it does. So, you were probably getting some gluten in the beginning, and some are extremely sensitive to gluten causing a dh flare. Second, a low iodine diet has individual nuances...you may or may not have figured out your big triggers. Took me a while to pick up carageenan was a mega trigger, NOT dairy. And they put the damn stuff in everything, not just dairy.

This is a process. I know you're in pain and your life is this hackneyed mess of oddball foods and trying to live through the rash....but the clouds will clear and you'll get there.

As far as the itch goes....mine was not always miserably itchy. A tiny bit of steroid cream (and I mean tiny) kept the itch and gross weeping waaaay down. So, that could just be you or your itch tolerance is better than others. And, you're on dapsone...so less itch may be (luckily) a side effect.

Btw, my rash would not fully heal til I got off steroid creams. Strange but true.

What doctors really know about dh is minuscule. Seriously. If you think celiac knowledge is lacking, well, dh knowledge is criminally low. Doctors have NO idea of the nuances of dh.

I know it's hard to keep going when doctors doubt you. But just do what works....and in the end you'll probably figure it out and settle it in your mind. If staying gluten-free gets rid of a blistering rash that responds to dapsone and iodine and your doctor doesn't want to call it dh then fine. Let him give it a new name and screw off. You do what you need to do to be healthy.

[Blaze422]

Actually, in defense of my dermatologist , she is very open minded. After being confident of her initial diagnosis of exzema, when I returned 10 days later with beet red elbows, I said that I know she thinks this is exzema...but I'm thinking....and she completed my thought by saying...Dermatijts herpetaformis. I said thank you jesus!

She confesses limited experience with DH...is humble and said that anything is possible. The fact that I began the process with less severe itching than her other DH patients is consistent with the fact that everyone is different etc. bottom line is that avoiding gluten is a good thing from her perspective regardless if it is exzema or DH .

[pricklypear1971]

Actually, in defense of my dermatologist , she is very open minded. After being confident of her initial diagnosis of exzema, when I returned 10 days later with beet red elbows, I said that I know she thinks this is exzema...but I'm thinking....and she completed my thought by saying...Dermatijts herpetaformis. I said thank you jesus!

She confesses limited experience with DH...is humble and said that anything is possible. The fact that I began the process with less severe itching than her other DH patients is consistent with the fact that everyone is different etc. bottom line is that avoiding gluten is a good thing from her perspective regardless if it is exzema or DH .

I understand your point and had a similar experience with my derm. He suspected dh but when I couldn't cite food reactions he put it aside. He did tell me it was autoimmune (without a doubt), and I would only resolve it by getting to the root of the autoimmunity. When I told him I was going to see an nd who specialized in autoimmune/thyroid because nd's are supposed to work with long-term management better than md's he was supportive. When I called back and told him it was (apparently) gluten and iodine and this dh he agreed 100%.

I will also say he gave me a boatload of steroid creams, two shots if steroids, a psychiatric grade antihistamine, and a bottle of prednisone - a valiant effort to help me but dude fried my already damaged adrenals. but hey, I was covered in rash and insane and he was trying to help. Always returned phone calls, always called personally, always worked me in. I love that man because he gave me the support to figure it out instead of telling me I was nuts.

BUT he also was/is painfully uninformed (and he's very experienced) about how dh can present without gi symptoms (though he does know how to successfully biopsy it). And THAT would have made all the difference.

So, give it time. If she's open minded she'll eventually get it. And so will you. I know it's easy to doubt when no one else will validate it. But in time it WILL be obvious.

[squirmingitch]

I second that emotion.