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Member Since 17 Dec 2010
Offline Last Active Feb 04 2011 03:19 PM

Posts I've Made

In Topic: New Here

26 January 2011 - 08:18 PM

Here are a couple of the abstracts of the articles I can find, and none specify the distance from a lesion that's necessary.

I think mine was perilesional and wasn't very inflamed. The blister was actually intact. The second article says "Noninflamed perilesional skin showed more intense IgA deposition in 18 of 19 specimens compared with that in never-involved skin "

Also, I remember both docs put the biopsy in formalin and I was told by people who work in pathology that for immunoflourescence, you don't put the sample in formalin. But I also read an abstract of a new way to test for IgA deposits without immunoflourescence. I mean, the above articles aren't new, so presumably it's not new information to physicians. So maybe they're all just using the new procedure that doesn't require immunoflorescence and thus can get away with the formalin.

I guess I have trouble trusting my docs, but also have trouble doubting them! Oh the dilemma.

In Topic: New Here

26 January 2011 - 07:51 PM

Your doctors didn't know what they were doing. Here is what the NIH has to say about how to biopsy properly. Not only do they need to biopsy the skin next to the lesion they have to use a special procedure to find what they need to find.


"A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA"

If you plan on getting tested for celiac make sure you get back on gluten for 2 to 3 months first. Even then you could have a false negative.

Thanks for your reply. I should get a copy of the results. I would hope that the dermatopathologist would have done the immunoflourescence to look for IgA. My mother-in-law used to manage pathology in town and was aware that that was necessary. She specifically spoke with the pathologist about it, and my dermatologist specifically indicated on the pathology request that the purpose of the biopsy was to rule out DH. So, the dermatopathologist at least should know what he's looking for, and if he didn't have an appropriate sample should have said so.

But, I know that's a lot of "shoulds" - I will check.

How far next to the lesion does the biopsy need to be? The punch biopsy taken was so much bigger than the lesion, that normal adjacent skin was taken with it, but nothing I've read indicates how normal, or how far away from the lesion. What does "next to" really mean? 1mm? 1cm?

My mother-in-law also spoke with another dermatopathologist she works with who was confident that this particular dermatologist I am seeing would know DH well, and that DH, even the lesions, will have unique characteristics, and even if not definitive when taken of just a lesion, should be distinct from other things - but I know from reading some articles that the location of biopsy is very important and that biopsying just a lesion can be misinformative. My derm told me he had a couple of people recently test positive for DH with biopsies...which gave me hope that he knows how to do a proper biopsy for it.


I know that I could go back on gluten and get tested for celiac, but the risk of making my skin worse as it just begins to improve is just not worth it right now. Also, I know I could have tried to get on dapsone, but the gluten avoidance and TCM is working now, so I don't want to mess with it right now. For the first time in 5 months I can say I am improving.

I think I might wait until I am completely better, which is still looking like at least another couple months, and then maybe try some gluten. If that does it perhaps I'll either ask for an endoscopy or a normal skin biopsy. Or perhaps I could go to the immunologist again and ask him to do the biopsy. Perhaps he'd have a better idea.

The other thing I'm unsure of is - as long as I am getting lesions, you'd think it means I have IgA deposits in my skin (if it is DH), so even if I'm a few months gluten free, the biopsy shouldn't be a false negative if there are still active lesions, one would think?

I just wish there was an absolute expert on all this stuff, in the city!

In Topic: New Here

25 January 2011 - 11:23 AM

Thought I should post because I've received results of both biopsies.
Neither suggested DH.

Although both docs biopsied lesions instead of skin adjacent to lesions, the derm did biopsy a fairly large area so I know he did get some adjacent skin at least. Also, my mother in law personally knows (she works in pathology) the dermatopathologist who looked at my second biopsy and she chatted with him, and overall, everyone is quite confident that there are certain things you'd see that would at least suggest DH, even if I'm gluten free and even if it's a lesion as opposed to normal skin.

I know I've read, and many here have said that it must be normal skin, not a lesion, and that being gluten free can lead to false negative, but if I was still getting lesions at the time then clearly whatever the cause was was still around, and if there was some surrounding skin in the biopsy, and the dermatopathologist specifically is looking for anything indicative of DH - I have to be able to be somewhat confident in the results? Right?

About 2 weeks ago, I finally turned a corner and started to heal and stopped getting new lesions. Persistent lesions continue to flare but in a very minor way, relative to what it's been like. The scars are all over my legs still, so still not a pretty sight, but the itch is almost completely gone. I don't know what did it - I visited a doc of traditional chinese med who was confident he could help, and I have been taking the stuff he gave me and it was literally 2 days after I saw him that everything un-inflamed and flattened out, but it's also my first month on a non-oral contraceptive, and it's also my third full month gluten free. So who knows!

I'm still gluten and dairy and shellfish and salt free, but am feeling like I might test soon.

In Topic: Anyone Gone Through Patch Testing

06 January 2011 - 06:56 AM

Did they biopsy the lesion or the skin next to it? If they biopsied the lesion itself then the test would be a false negative as the biopsy needs to be taken from intact skin next to the lesion.

Does it always have to be completely normal skin? 2 docs biopsied me with a punch, taking a lesion but in addition a tiny bit of surrounding normal-ish skin. One of those docs is a dermatologist specifically looking to rule out DH. Surely he would know what he was doing? I even asked if he had to take some normal skin and he just said "no no this is fine for now"

In Topic: Dh And Minor Wounds?

03 January 2011 - 09:47 PM

A sad reflection indeed on the fragility of the M.D. ego :P Your doctor is supposed to be your partner in your health care, not your dictator, and certainly not someone to be afraid of :unsure: How can we get the right medical care if we can't have a frank discussion with our doctors?

I agree with you mushroom - we as patients should be the central part of our healthcare team, but my doctors don't even really communicate with my other doctors (wouldn't it be ideal for the dermatologist and allergist to have some kind of communication?), but I also have a concern that I'm already doing way too much self-diagnosis and need to "trust" my doctors which is why it took me a couple months to even ask my dermatologist about DH and then another couple weeks to ask for a biopsy. Honestly I think my dermatologist really doesn't think it's DH and so he would be very reluctant to prescribe dapsone.

Another question for any of you with DH - do you get recurrent lesions in the same spot just when you think that spot has healed? Until the purplish scar left behind from a lesion has completely faded away, which seems to take a long time, I seem to be susceptible to getting another bump in that same spot, though not as bad as the original.

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