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DH Biopsy while on gluten-free diet?

AIMama

By AIMama
in Dermatitis Herpetiformis

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AIMama Newbie
AIMama
Posted

Hi,

 

I have been gluten-free for 3 solid months now and out of the blue I have small fluid filled blisters on my hands.  This happened to me in 2010 (lasted for about 16 months and progressed from a few blisters to complete scaling/cracking/blistering of my palms and fingers, and eventually pitting and loss of my nails).  At that time I had no clue about the Celiac in our family (my 6 yr old daughter has Celiac, I am at a minimum NCGS, but my doctors are pretty sure I have Celiac too.  I am still trying to decide if it's worth to do a gluten challenge) and had never heard of DH.  My derm back then diagnosed me with dyshidrotic eczema and put me on every topical steroid known to man.  Nothing worked, but eventually it went away.

Fast forward to now...my new doc is suspecting that the blisters are DH and wants me to get a biopsy.  I thought I had read that it will not be positive if I am not eating gluten.  She says I must have accidentally eaten some and if I have blisters it means I will show the antibodies on the biopsy.  Does anyone know if this is true?  Has anyone else had a positive DH biopsy while being strictly gluten-free?

 

Thanks!

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squirmingitch Veteran
squirmingitch
Posted

Hi AIMama,

From all that I have read in medical texts, a dh biopsy will show negative if you have been eating gluten free. 

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

This is VERY IMPORTANT!!! Note WHERE the dh biopsy is done!

Open Original Shared Link

Open Original Shared Link

Because it can not be over emphasized:

Open Original Shared Link

 

HOWEVER, There have been people who came on here & said they got a positive dh biopsy even though they had been gluten-free for a short time, maybe a couple months. That does not mean it's a given. Who knows what those people were eating. Maybe they were getting cross contamination all along but didn't know it. There are hundreds of possibilities. If it were me, I wouldn't chance it & here's why:

If they do a dh biopsy & it's negative then they close the steel door in their brain & that's the end of it EVEN though you may have discussed with them that you have been gluten-free for 3 months. If they will put it in writing that they will do another dh biopsy after you've done a gluten challenge THEN you could try doing a biopsy now but I would not trust them unless they put it in writing & handed YOU the paper.

I've seen way too many people get screwed up by derms & end up without a dx because the derm did biopsies wrong, said you don't have to be eating gluten, said the antibodies would still be there, said a billion things wrong. Who pays for their mistakes? The patient.

You want a prime example of how easily a derm can screw a patient out of a dx because they don't know what they're doing? Read this thread:

Now, you very well could get a positive on a TG3 blood test. GET THEM TO DO THAT. You will find I talked about that in the above referenced thread and gave links for info. on it.

 

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