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jlaw

Member Since 25 Jul 2012
Offline Last Active Jun 24 2013 10:26 PM
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Topics I've Started

Is My Biopsy Wrong?

22 June 2013 - 03:44 AM

Hi friends, I have been in and out of this forum for a bit and now wanted to update you on the latest twist. After my skin biopsy, i have been gluten-free for nearly a year. After extremely extensive rash (scalp to soles) my skin is now nearly free of active lesions. Lots of the post-lesion marks though! 

We live in India but currently back home in Aus for various reasons for a couple of months. One of the main reasons was that there is a doctor here who specialises in DH right near my hometown. Before my appointment with him, I decided to have some tests done for routine check up. I wanted to have the kids tested for the coeliac genes and while I was there, I had mine done as well, just for fun. And we all came back negative. Yep, that's right. I have a positive DH biopsy, yet negative for the genes. 

So I take this to my DH expert (I really really like him and trust him a lot) who says I am a 'puzzle' but my skin actually looks a lot like lichen planus (anyone else with experience with this??). No mucosal changes though. So he says the only way I can be sure is a gluten challenge. Since I've never had the gut issues really (not that I can feel) I agreed. I have known since a baby I am gluten intolerant, so I'm expecting the usual headaches/fatigue but maybe worth it if I can rule out DH. I still have a lot to get my head around. I have spent a lot of time mentally adjusting to coeliac/DH and maybe all for nothing. Will keep you posted on the gluten challenge. He says it could take 4-6 weeks to get anything decent enough to biopsy, and if no rash comes I can assume it's lichen planus.

 

Any thoughts on this?


Dyshidrosis Connections?

03 February 2013 - 03:06 AM

Grrrr. After having to figure out my son's skin and all that mental stress, my dear daughter (nearly 6) has popped up with her own variety of skin blisters. A few on her fingers, two on her face. One on the back of her leg near her foot, all within the last 3 days or so. I'm thinking maybe dyshidrosis (relying on google here...) Does anybody have any experience with this? Not looking like DH I don't think because each blister is beautifully isolated. No redness around it. But wondering if it could be related.Would appreciate any advice :-/

Dh Article

29 January 2013 - 11:55 PM

Hi friends, I have been sent an article on DH, written by a dermatologist who has coeliac disease himself and specialises in DH. Only problem is it is electronic (PDF) and I'm not sure how to make it available. If anyone wants it, perhaps email? Or can I attach things in private messages here? Anyway, let me know if you're interested in figuring it out. Otherwise I won't worry!

Chronic Non-Specific Dermatitis...

23 December 2012 - 03:50 AM

...was the result of my son's skin biopsy. Which quite frankly, I knew before I even took him to the doctor's office. I was kind of hoping to clear up the 'non-specific' part! So needless to say a little frustrated. And a little mad. When I spoke to the arrogant doctor (as previously documented on this forum :-) ) we discussed that he would take 3 samples - two blisters and a clear bit. When I took the dressings off, I saw he took the first two only. So I'm wondering if that's what's led to this result? Is it possible that such an inconclusive outcome is due to just taking two blisters and no clean skin?

Prednisone Advice/experiences?

16 December 2012 - 02:55 AM

So yesterday I had my four year old biopsied for DH. It was one of the most frustrating experiences of my life. This is the same dr that did my skin biopsy after literally arguing with him that I did not have scabies. So I walk in with my son whose skin has started to blister in 4 different patches. The dr tells me my son has scabies. (Here we go again.) I say no. He says four year olds don't get DH. Fair enough, it's rare. BUT it is genetic, and his skin is blistering. It's worth following this up. So he says we'll do the blood test first. I say no. My blood test came back negative, and my biopsy positive. Let's just go straight for the biopsy. He calls me ignorant and says 'If the mother wants a biopsy, we do a biopsy' in such a condescending way I could've punched him.
(Can't believe he didn't learn from last time!)

So while we're actually doing the procedure (which let me tell you is painful for a mother to watch), he says to my four year old "how many times do you want to punch your mother for putting you through this pain?"


End rant. Take a deep breath, and remember I need to do this for my son.

ANYWAY, while we're there, he saw how bad my skin is. He wrote me a prescription for dapsone with no suggestion of follow up bloods. No, I won't be taking that under his care. When I brought that up to him, he said we could check my blood in a month.

He also wrote me a prescription for oral prednisone. This is the one I am confused about. I know it can be an issue taking prednisone before testing, but I'm done with my testing. What are people's thoughts/experiences about this?