Testing

[Mckenzie111]

Hi all, 

This is my first time on a forum like this..

12 years ago (I was 15) DH popped up on my elbows for the first time after a traumatic event (dr's didn't know what it was)

5 years or so later (early 20's) I was diagnosed with food intolerances which included gluten

1 year later, a dermatologist recognized the rash on my elbow, grafted it, and confirmed DH... she told me, paired with my gluten sensitivity, this meant celiac disease

I cut out gluten immediately, but never sought any further testing. (I have, however, since worked with function medicine doctors/naturopaths to work on healing my gut)

That brings me to the now, in which despite a gluten free diet, and years of many, many supplements, and I still live with DH.

Does anyone have any opinion on whether I should seek further testing to confirm celiac disease? Is this necessary?

If so, which testing would you recommend? I have not eaten gluten in over 5 years. I do not want to have to reintroduce it out of fear for the further damage it could cause.

Thank you

[Scott Adams]

If you got an official DH diagnosis then your doctor's assessment that you have celiac disease is likely accurate. Given everything I know about how miserable DH symptoms are, I would not recommend that you go on a gluten challenge to get a formal diagnosis unless you feel that you can't maintain a gluten-free diet without one.

The reason that you might still have DH issues could be because you may be getting tiny amounts of contamination in your diet on a regular basis, which usually happens if you eat outside your home, or your food is getting cross-contaminated at home. This article may help you determine if that's possible in your case (also, some celiacs can't tolerate oats, even gluten-free oats):

 

[Wheatwacked]

Which supplements and how much?

He recalled purchasing a new, over-the-counter multivitamin about the same time the new outbreak of DH began... We reviewed the ingredients of 55 separate multivitamins at a local superstore pharmacy. “Gluten,” “Wheat Extractive,” or “Wheat Bran” was found in 25% of formulations. Flare of dermatitis herpetiformis associated with gluten in multivitamins

[knitty kitty]

@Mckenzie111,

Welcome to the forum!

My DH will flare if I eat foods high in iodine like dairy, crustaceans and other seafood including nori seaweed.  My worst flare was after being given iodide based contrast dye for x-rays at hospital.

Here's an interesting article....

Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

 

Edited May 31, 2022 by knitty kitty
Typo correction

[CatrionaB]

10 hours ago, knitty kitty said:

@Mckenzie111,

Welcome to the forum!

My DH will flare if I eat foods high in iodine like dairy, crustaceans and other seafood including nori seaweed.  My worst flare was after being given iodide based contrast dye for x-rays at hospital.

Here's an interesting article....

Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6698721/

 

I agree it is most likely gluten cross contamination or iodine

https://celiac.org/about-the-foundation/featured-news/2015/10/dermatitis-herpetiformis-and-iodine-exposure/