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Biopsy question


Moonscout

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Moonscout Newbie

I have a question regarding the best time to take a biopsy. 

I have what I suspect to be dh for about 15 years. Its always been mild enough that in the first couple years that I shrugged it off. Its a rash that presents on the outer side of both my elbows and sometimes knees. The rash has a mind of its own and I can never predict when its coming or how bad its going to be. Sometimes it takes over both my elbows and sometimes, as I have at the moment, its just a few lesions - but always bilateral. I also never know when I'm going to get it. It can occur constantly over a period of months, every other month or I've gone up to a year between out breaks. July '17 I had an appointment with a dermatologist to finally figure it out but it's very hard to get an appointment and of course I was between outbreaks. The derm agreed that it was autoimmune related but was not sure what it was (It filled me with such confidence) so a biopsy was ordered. Since I was between outbreaks and a biopsy couldn't be taken and I have a note in my file saying to fit me in if I call. I'm currently in the middle of a very mild outbreak and debating if I should call. If I can't get in this week, I'm afraid it will be gone by next week. Which brings me to my question (finally) Is it too late to have the biopsy done if the lesion breaks? 

 A quick overview of what my rash looks like: It starts out with what looks like bug bites, they are usually very sensitive. I can tell they are coming when I set my elbows on the table because it feels like tiny metal balls being stuck into my skin. Then they start to itch and form small blisters which eventually break heal and turn the skin a purplish color for a few weeks before disappearing completely. 

I really want to the diagnosis stage over with and the unpredictable nature of this rash does my head in. I refuse to give up gluten without a diagnosis but I highly suspect that it is dh.


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squirmingitch Veteran

No one can answer your question with such precision but I would say as long as the lesion has not begun to heal. Make sure the biopsy is done from a clear area adjacent to an active lesion.

Moonscout Newbie

Thank you for the reply! That was basically what I wondering.  

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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