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For Testing, What Is An "active Lesion?"
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Hi, Gang!

About two weeks ago, our daughter showed me a spot on the back of her knee that she said itched really bad. I told her it looked like one of the spots I get on my hands, forearms, and occasionally on my legs and tops of feet. She put a bandaid over it so that she couldn't scratch it and it wouldn't rub on her jeans during school. A few days later, the whole back of her knee was a bright red mess! It looked to me as if it was irritated from the bandaids, but she said it itched. I told her to leave the bandaids off, put shorts on at home, and to put antibiotic cream on the area. It looked somewhat better the next day, but the day after that she showed me other spots that had sprung up down her leg! One on the front side of her knee was like a water blister and she broke it open. Now they all look like open sores and a few of them are the size of nickel or a bit larger. She also has a few spots on her other leg as well.

I took her to our PCP (had to see the PA) on Thursday, and he said it looks like impetigo. He suggested cream and an oral antibiotic. I re-emphasized our family connection to celiac disease (our oldest son, my father with definite dx; my sister, brother, and me with probably celiac disease but no dx) and insisted that I would like to have an updated celiac disease panel run on her as well as a skin biopsy for DH. He was not thrilled, to say the least. He wanted to give it a week of treatment and if it cleared up, all would be good. If not, then we could test for DH. I told him I didn't want to wait a week. They couldn't do the biopsy that day because of scheduling, so we set it up for Tuesday.

My question is: the spots are looking much better, so will the antibiotic treatment cause her to test negative? I read on one post that a steroid treatment would mean a negative result. The spots will definitely still be visible on Tuesday, but does that mean they're "active?" They are no longer draining, but still itch when she touches them. Should I have her discontinue the antibiotic cream and oral?

I am having her eat as much gluten-containing food as possible this weekend. I just don't want this to be a missed opportunity to find the culprit. I know most people go for YEARS without getting the correct dx, just like my dad. Words of wisdom??

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Visible does not mean active, I'm afraid. If they are not driving her crazy they are probably not active :rolleyes: If you want a positive result you should discontinue the AB's, and yes, eat gluten and try to stir things up a bit. You do know it is important that the testing is done on the skin immediately adjacent to a lesion, right? and not on the lesion itself.

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Visible does not mean active, I'm afraid. If they are not driving her crazy they are probably not active :rolleyes: If you want a positive result you should discontinue the AB's, and yes, eat gluten and try to stir things up a bit. You do know it is important that the testing is done on the skin immediately adjacent to a lesion, right? and not on the lesion itself.

Thank you, Mushroom! Yes, I do know about the testing site and mentioned it to the PA. He reacted as if he was already aware. If her skin continues to clear and she has no further spots crop up, I may cancel the appointment and wait for another outbreak. No need to make her go through the procedure twice....and I wonder if they would even do another biopsy if the first one comes out negative?? Stopping the antibiotics today!
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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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