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


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#1 traciknop

 
traciknop

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Posted 17 June 2013 - 12:12 PM

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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#2 squirmingitch

 
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Posted 17 June 2013 - 04:48 PM

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:

http://www.thyca.org/rai.htm#diet

 

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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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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