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artistsl

DH biopsy question

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I have had an incredibly itchy rash on my knuckles since 2004. It drives me nuts. Keeps me awake at night sometimes. I went gluten free and after 6 months on this new diet the rash disappeared for the first time in 13 years! I was amazed. My annoying rash along with joint pain, fatigue and brain fog just totally  disappeared. It was like I had stumbled upon a great new world. I then read about something called DH and how if you suspect gluten sensitivity then your rash should be biopsied. So I visited with my dermatologist and she said that she will perform a biopsy. She told me to eat gluten and then call her when the area starts to form a blister. I've read about gluten challenges and how you need to eat gluten daily for 12 weeks or some crazy amount of time for the antibodies to show in your bloodwork. Typically when I eat gluten it takes only 2-6 hours for my rash to form a blister (they are tiny blisters that look like poison ivy). My dermatologist told me that sometimes it can take 3-4 biopsies in order to test positive. So my question is do I need to eat several weeks worth of gluten in order to test positive for DH? It takes one piece of bread for me to form a tiny blister and she said to call her when the area starts to form a blister. I'm afraid that if I don't eat enough though then it may come back negative. 

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What is your objective? If it's a diagnosis then you should prepare for a gluten challenge, you could also ask about a celiac blood test to improve your chances of a diagnosis. It can be rough going, but it's the only way to get accurate test results. Be warned however, some people with a gluten problem won't test positive and there's no treatment at the end other than a gluten-free diet (and maybe some dapsone or similar for the rash). 

If you do the challenge keep a food diary and start a thread on here for advice and moral support :) best of luck whichever path you choose!

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On 6/7/2017 at 6:05 AM, squirmingitch said:

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

Short answer:

Yes, you need to do a gluten challenge or you can easily turn up with a false negative on the dh biopsy.

On 6/7/2017 at 6:36 AM, Jmg said:

What is your objective? If it's a diagnosis then you should prepare for a gluten challenge, you could also ask about a celiac blood test to improve your chances of a diagnosis. It can be rough going, but it's the only way to get accurate test results. Be warned however, some people with a gluten problem won't test positive and there's no treatment at the end other than a gluten-free diet (and maybe some dapsone or similar for the rash). 

If you do the challenge keep a food diary and start a thread on here for advice and moral support :) best of luck whichever path you choose!

My intent is to get a positive on the DH. I guess I'm questioning the duration of a food challenge. My dermatologist told me to just eat gluten and call her next week when a blister starts to form. It only takes 2-6 hours for me to develop a blister after eating gluten. I guess I'll give it a couple of days of eating gluten and then call her back just to be sure. Sorry, this is all so confusing to me. Science really needs to get on the ball to develop a test that can diagnose immediately. 

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1 hour ago, artistsl said:

My intent is to get a positive on the DH. I guess I'm questioning the duration of a food challenge. My dermatologist told me to just eat gluten and call her next week when a blister starts to form. It only takes 2-6 hours for me to develop a blister after eating gluten. I guess I'll give it a couple of days of eating gluten and then call her back just to be sure. Sorry, this is all so confusing to me. Science really needs to get on the ball to develop a test that can diagnose immediately. 

Yes that would be awesome!  I guess if the blisters are forming the reaction is ongoing and the antibodies should be there. It certainly seems logical. I like that your dermatologist is prepared to go back 4 times to establish, sounds like she understands its a difficult one to pin down.  

I hope you update us on how you go on. The last time I ate gluten in some quantity I got very itchy rash on elbows very quickly. So I often wonder if I got glutened again and it appeared if I'd be better trying to get that tested than trying for blood tests again. I dont plan on eating the gluten but I am v interested!

Best of luck :)

 

 

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You have to eat gluten for 12 weeks EVEN for the dh biopsy. Not just a few days. 

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1 hour ago, squirmingitch said:

You have to eat gluten for 12 weeks EVEN for the dh biopsy. Not just a few days. 

Ah shucks :(

 

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I called my dermatologist back and she said that it needs to be biopsied when a blister is starting to form. This makes sense to me because if I were to perform a twelve week gluten challenge then by that time the area in question would likely be all scab and no longer show any blistering. I'm going to try her method and let you know how it goes. I made an appointment for July 5th because my blisters are usually predictable and form within 2-6 hours after consumption. I'm relying on that consistency for the biopsy. 

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Good luck, hope you get the answers and certainty you seek. Remember if tests are negative there's nothing to stop you returning to the gluten-free diet, you already know it can resolve your symptoms. :)

 

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