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Dh Help Please, Fever Blisters, + celiac disease X 18 Months

traciknop

By traciknop
in Dermatitis Herpetiformis

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traciknop Rookie
traciknop
Posted

I am desperate for any suggestions. I have been DQ2 +, Celiac Dx positive for 18 months. I have been gluten-free intentionally since then. 

I was exposed to Gluten 3 weeks ago and have been suffering terribly with what I believe to be severe DH?

 

I feel a sort of numbess on one side of my face- but its more like a sensitivity- when touched my hair, head is tender to touch-

(I know this sounds really nuts)  The clear fluid filled blisters cluster on my lips and sometimes my eyebrows/hairline...

 

The derm. says it cannot be DH because it is not symmetrical (on both sides). These same symptoms happened on/off for years prior to

the DX of Celiac.... what prompted the testing for Celiac was iron def anemia for 9 plus years. 

My Hemoglbn, Ferritin, Iron studies have greatly improved over the last 18 months! 

 

I am DQ2 positive. These blisters hurt terribly and are lingering....do I go see a diff. dermatologist? Any help? I am incredibly frustrated -

Thank you for any help---

 

(I also work for a gastro doctor :(  )

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squirmingitch Veteran
squirmingitch
Posted

You can try going low iodine & see what happens. Iodine is known to make the dh worse or make it flare. For low iodine diet see:

Open Original Shared Link

 

The only reason I could see for you seeing a derm is to get Dapsone but since you've already been gluten-free for 18 mos. then you shouldn't need Dapsone especially considering your outbreak is due to a glutening. UNLESS what you have is not dh. DH does not always present bilaterally ~~ & in your case ~~ being gluten-free 18 mos.; it's not going to always present typically. 

 

You do understand don't you that you have already been dx'd celiac & there would be nothing to gain by being dx'd with dh (except for the Dapsone). A dx of dh is a dx of celiac so either way you have celiac. Furthermore, there is no test now for the dh for you as you would have to be actively consuming gluten for a dh biopsy. So you would just be frustrated trying to get a dx of dh.

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