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Seeing Dermatologist Again Soon


Alwayssomething

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Alwayssomething Contributor

I am going to my dermatologist in a couple days for a rash that doesn't appear to be DH like my other rashes have been. I have been gluten free for almost a year (October will be one year) if I understand things correctly I can not be tested for DH becuase it will not be accurate since I have been gluten free, is this information correct?


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squirmingitch Veteran

Yes, you are correct that the biopsy for dh will be negative having been so long gluten-free. However, IF you have been getting regular cross contamination then it could prove to be positive. But if that were happening then you would surely be having dh present.

Alwayssomething Contributor

Since seeing your suggestion for eliminating Iodine as well I have been symptom free. Yahoo!!! How long do you suggest before I add it back a little at a time?

eatmeat4good Enthusiast

I have DH too and did not heal until I got the iodine as minimal as I possibly could. That is a very limiting diet so I "tested" it every month or so to see if I could add it back. For me, it was several months AFTER the healing before I could tolerate iodine without breaking out. The outbreaks were minor compared to a gluten outbreak, but I would suggest you wait at least a couple of months if you are sensitive to iodine. But if you are like me you will test it more often to see if you can vary your diet a little more. ;)I can use it now with no problem. My endocrinologist said it was ok to limit iodine for a few months until the sores healed so that is what I did.

pricklypear1971 Community Regular

I was gluten-free 2 months before figuring out iodone. Did no iodine 2 weeks and healed. Started with adding back half n half for coffee. I added milk products back first since they were hard to sub. I went slow. Big itchies for me were seaweed products and egg yolks. It took me about 3 months to be able to handle a "load" like a 2 egg omelet, half n half, and asparagus in the same day. And I didn't do it 2 days in a row:). I got an outbreak at about 2 1/2 months over thanksgiving. Somehow I managed to come up with a very iodine rich menu, then proceeded to eat it for 2 days. It got me.

squirmingitch Veteran

I agree with eatmeat & Prickly. You just have to test it every once in a while & see where you stand. From what I've read of others reporting on here it seems that seafood is the biggest hurdle for iodine though. I'm guessing that's the last thing we will all be able to add back in our diets for those of us who have the iodine "connection".

eatmeat4good Enthusiast

Oh yeah, I still don't do seafood due to the iodine. I'm chicken to try it. Did have shrimp over New Year's and it did a real number on my DH, so I think I may be "all done" with seafood, but I handle milk products and eggs now with no problems.


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pricklypear1971 Community Regular

Seafood, ok shrimp, was actually ok for me. I could even eat a bit of sashimi... I would make that my "iodine of the day" but still...I could do both around 2 months.

But seaweed, carageenan. Ut uh. It was my tipping point. And egg yolks. I think potato skins got me, too. Asparagus was a noticeable reaction too.

Everyone is different.

squirmingitch Veteran

I like being an individual human being but sometimes I wish we were all clones so we could have a nice neat little rule book we could follow --- one size fits all sort of thing. Would make dh a lot easier to deal with!

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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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