How Many Have Dh, Really?

[cassP]

Does anyone know of another skin disorder/rash that resolves with gluten and iodine withdrawal??? I'd love to read about it! Iodine allergy is the only other disorder I can find that responds to iodine withdrawal.

I can't figure out how they only dx it with a test that is up to 37% false negative rate. Why don't they dx it by iodine withdrawal, also?

oh yes- gluten intolerance can cause &/or exacerbate many many skin disorders- including excema, psoraisis, acne, dandruff.. etc..

all excema i had in the past would disappear when i removed wheat from my diet (not even all gluten).... i am now gluten free- and my excema on my knuckles is STILL there- but my system is so so so much more sensitive then before- and also reacts to corn & dairy- so maybe that's why.

[pricklypear1971]

oh yes- gluten intolerance can cause &/or exacerbate many many skin disorders- including excema, psoraisis, acne, dandruff.. etc..

all excema i had in the past would disappear when i removed wheat from my diet (not even all gluten).... i am now gluten free- and my excema on my knuckles is STILL there- but my system is so so so much more sensitive then before- and also reacts to corn & dairy- so maybe that's why.

I understand there are other skin problems linked with gluten.

What I would like to know is if there are others that resolve specifically with withdrawal of iodine on top of gluten withdrawal. My rash would get "better" on gluten-free diet, but withdrawing iodine was like smothering the fire. Now that I'm over a month low-iodine I can add iodine foods back, in moderation, without recurrence. If I add too much iodine a spot starts to flare up - this can be milk, salt, carageenan based iodine - not specific to one food group.

So, I still would love to know if there are other rashes that respond to iodine withdrawal on top of gluten withdrawal - except iodine allergy (which i'm pretty sure isn't the cause of my other issues or the rash).

My rash, in all it's glory, is liquid-filled and acts like DH. My low-iodine diet has been very successful - so much so there isn't anything to biopsy. I'd like to be prepared next time it flares to request specific tests in addition to DH to get the most accurate dx.

I also can't figure out why, if iodine/gluten withdrawal is so specific, why it isnt part of the dx.

[Jenniferxgfx]

Iodine is required for the chemical reaction taking place in the skin from a gluten response. Limiting iodine exposure while healing gives the lesions a better chance at healing up.... Eventually when healed or mostly healed, iodine might be reintroduced and see how it goes. I don't know of any other skin conditions that work this way, although an iodine allergy may cause hives.

I talked to an allergist recently and he was familiar with dh but not at all with the iodine connection. He's the only doc out of dozens who even knew about dh, so I don't think this is common knowlege at all.

[pricklypear1971]

Iodine is required for the chemical reaction taking place in the skin from a gluten response. Limiting iodine exposure while healing gives the lesions a better chance at healing up.... Eventually when healed or mostly healed, iodine might be reintroduced and see how it goes. I don't know of any other skin conditions that work this way, although an iodine allergy may cause hives.

I talked to an allergist recently and he was familiar with dh but not at all with the iodine connection. He's the only doc out of dozens who even knew about dh, so I don't think this is common knowlege at all.

My derm knew about the iodine connection...but didn't recognize my rash as DH. Granted, it did change "personalities", and I do remember him asking if the bumps had liquid in them..... At the time I didn't think so (that was when I used corticosteroid cream -and it made them look and act differently).

The first outbreak I had after getting off the steroids -I thought I was sweating out a fever, the blisters were popping over and over for days -since the rash is under my arms, and I was freaked out, I thought I was sweating!

[Jenniferxgfx]

I've had that "I think I'm sweating but I'm not hot" reaction too. I can't believe how many years it took to figure it out. I read about dh years ago, too, and it seemed so obscure and doctors kept saying the only thing wrong with me was my fatness. I believed them, over and over. And it was dh all along!

I used to eat a lot of iodine-heavy food too. (seaweed especially!) I had no idea why my skin would get so much angrier after a vegetable meal that seemed free of irritants.

I'm glad I know now, but dh was quite a mystery for a long time.

[squirmingitch]

[As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.]

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I think most of us have only found out we have DH through the computer which allows us so much access to other people's experiences. I NEVER would have known were it not for the computer. And I searched & searched off & on for about 2 years. I tried every combination of words I could think of to Google & never came up with DH. I tried dermatology sites, lists of skin disorders --- everything I could think of. Every few months I would make another stab at it. Without a doubt I knew I would be either laughed out of the office or misdiagnosed if I went to a Dr. or derm with the small outbreaks I was having at that time. Heck, I was even misdiagnosed when I had a monster outbreak & went to an urgent care clinic.

I went to a GI last year because it was time for my 1st colonoscopy (overdue at 53)& told the doc about my unbelievable bloat issues. He said, "Well, with what people eat these days" & trailed off. He never even questioned me further on it. Yet he wants me to have a colonoscopy every 5 yrs. instead of the normal 10 because my father had colon cancer.

So after my 2nd BIG horrendous outbreak I hit the computer hard & heavy looking for an answer. It was not until I typed in the words "tiny itchy blisters" that I hit paydirt & found a link to this site:

Open Original Shared Link

You want to know how many undiagnosed & misdiagnosed there are out there? Just read all 196 posts on there. Not all of them have DH but IMHO the vast majority of them probably do. Read how many have gone to the doc & come away frustrated by misdiagnoses & being told to go see a psychiatrist. I am by nature a digger & wouldn't give up so I checked every suggestion listed within those posts & came up with a fit for DH. Then I researched DH & found celiac & from there to this forum.

If you want my vote then I think there are tons of people out there who have no clue & may never have. The only thing saving some people is that going gluten free right now is "trendy" & so they do it & that's why we have as much gluten-free stuff in the stores as we do. Many of those doing it to be "cool" will find themselves losing that rash, acne, psoriasis, eczema, etc.... But they likely won't find out it's DH or that they are celiacs.

[itchy]

Thanks for all your great points, squirmingitch.

Many of us on here probably diagnosed ourselves from the internet after months or years of frustration in medical offices.

Several physicians pooh-poohed my suspicions of gluten intolerance over the years, and steered me away from the correct diagnosis. Only with information from the internet was I able to convince a dermatologist that I was coeliac with DH.

I no longer take anything a physician tells me at face value.