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Are These Active Lesions?
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So I am still trying to understand my skin before I go to the derm on the 16th. As I walk around itching I decide to actually look at what scratching. Are these considered active lesions? Also can a derm order a celiac blood panel?

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8D355CED-BD6F-4984-8281-BC4F38EBDDF2-1855-000001C4ACA54E32.jpg

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Yes, I would call them 'active' lesions. They are certainly 'active' as evidenced by the red inflammation. And lesion is a word with a broad definition that basically means diseased area or injury.

To me your lesions look like DH, and I would expect if they get worse or you scratch harder they will become 'excorciated' and become bleeding sores. In mine they 'stung' and hurt, rather than itched, although the distinction may be a fine one. I associate itching with the healing period in the process, stinging with getting worse.

I can't offer an opinion about the blood panel. None of the medical testing I had ever identified DH or coeliac disease and I am self diagnosed largely as a result of comparison photos, associated gastrointestinal symptoms, and the fact that strictly avoiding gluten 'cured' both aspects of the disease. Albeit slowly in the case of skin symptoms.

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Yes, I too, would say those are active lesions. I think it depends on the individual derm as to whether they will order the blood panel or not. Any doctor with a medical degree can order the tests; the question is will the derm. May guess is the derm will say to go to your GP & ask the GP to order the tests. If the derm orders them then the results will be sent to the derm & the derm may not feel comfortable interpreting them. You could counter by saying you will take the results to your GP for interpretation. (Also post them here along with the reference ranges -- we have members who are very versed in interpreting them). Bottom line ---- it never hurts to ask --- all the derm can do is say no. But do you realize that those of us with dh test neg. on the blood panel more often than regular celiacs do? That's b/c it's in our more in our skin. This info. is in the "Interesting Reading on DH" thread.

BUT --- here is the current FULL blood panel for celiac. You can print it out & take it with you:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

If they order less than these tests then they have not done the full panel.

And I will remind you that a dx of dh IS a dx of celiac.

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Well I went ahead and made an apt for my GP. I'm gonna get the celiac panel, 100 food allergy panel, environmental allergy panel( which I know I have but I want to see my numbers)

Anything else I can request

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They look like mine. I'm not a doctor and I haven't tested positive yet. But the blister in the top picture looks exactly like mine do. And if you're like me they crater after the blister pops and look like something on the surface of the moon. Good luck with the doctors!

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Well I went ahead and made an apt for my GP. I'm gonna get the celiac panel, 100 food allergy panel, environmental allergy panel( which I know I have but I want to see my numbers)

Anything else I can request

Thyroid panel --- not just TSH, but free T3, free T4 --- the whole shebang. Vitamins & minerals. Especially B's, B-12, D & iron.

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Also, on the thyroid, get a t3 re-uptake.

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    • 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!
    • Hey guys, the last year and a month of transitioning to totally gluten free was hard, but I now seem to be healthy. The first six months I got horrible cramps that would suddenly come and hit hard, but I really havent seen any of those since about February-March. One thing that I wouldnt say has gotten better is my psyche. I was always sort of an anxious person (hard not to be when you dont feel well yet you have "IBS" and you're just "nervous", which all of you probably know), but I am borderline hermit now. I finally went to the doctor today and was prescribed prozac, so hopefully that helps, but I was just wondering about you guys? Thanks  
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