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Another Pic - Do You Think This Is Dh?
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15 posts in this topic

Hello all. I know that you aren't able to diagnose my son but I would love to hear your thoughts. My 6 year old son has a rash on both of his elbows (one side is worse than the other) and I want to be armed with as much info as possible before we go see the doctor. Do you think it's possible that this is DH? He says it's itchy sometimes but not all the time so that leads me to believe that it isn't. I'll have the doctor look at it anyway but do you think it's worth asking for a biopsy? Just not sure what to do next (if anything at all!). Thanks for your input :)

http://www.flickr.com/photos/43034105@N08/9256884905/lightbox/

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Here's some more info. My son has not been diagnosed with celiac - he has allergies (dogs and cats and hay fever to a lesser extent) and has struggled with reflux since he was a baby. I believe either celiac or ncgs is in our family. My grandmother has always said she had celiac disease though I don't think she was officially dx'd. My grandmother, my brother and myself all deal with gi issues, apnea/snoring, and skin issues (eczema, keratosis pilaris) as well as fatigue and depression (oh and I am really low in iron as well). I recently had celiac blood work done which all came back negative. Obviously celiac/food sensitivities are on my brain and there is a strong possibility that I am simply being an over-concerned parent but skin issues seem to signal internal issues. I'm just trying to figure out what to do next... I can almost guarantee the doctor will give me some cream to put on his elbows and send us on our way. That just doesn't really get to the underlying issues IMHO. I'd love to hear some of your opinions (even if it's that I'm being unreasonable!). Thanks :)

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DH is itchy, itchy, itchy!!!!! He would be clawing himself raw. And photos can be tricky..... It doesn't really look like dh. It could be psoriasis of some kind. I wouldn't push for a biopsy for dh for this reason ~~ If he does it & it's negative then you'll play hell getting him to biopsy it again for dh at a later date should the need arise.

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DH is itchy, itchy, itchy!!!!! He would be clawing himself raw. And photos can be tricky..... It doesn't really look like dh. It could be psoriasis of some kind. I wouldn't push for a biopsy for dh for this reason ~~ If he does it & it's negative then you'll play hell getting him to biopsy it again for dh at a later date should the need arise.

Thanks squirmingitch. That's what I thought. I'll take him in to the doctor anyway, just to see what he says, but I won't push for a biopsy. I appreciate your thoughts!

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YVW!

A question. Does anyone in your family have celiac disease? I haven't been on the other forums in a while so don't know your situation. So I'm wondering what made you think it might be dh? 

 

There are many rashes & skin problems associated with celiac disease. If at some point you suspect again that he really does have dh, then come back here before you have him tested so you can get the right info. to walk into the doc with so you can make sure he gets tested the right way.

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YVW!

A question. Does anyone in your family have celiac disease? I haven't been on the other forums in a while so don't know your situation. So I'm wondering what made you think it might be dh? 

 

There are many rashes & skin problems associated with celiac disease. If at some point you suspect again that he really does have dh, then come back here before you have him tested so you can get the right info. to walk into the doc with so you can make sure he gets tested the right way.

Ah! I had a long post with more info but it seemed to disappear (all my posts need mod approval since I'm new so maybe that's why). My grandmother has always said she has celiac disease but I don't think she was ever actually dx'd. My grandmother, my brother and I have all dealt with GI troubles (cramping, diarrhea), snoring/apnea, fatigue and depression (and I recently found out I am really low in iron). My doctor recently sent me for celiac blood tests - they all came back negative. My son has not been tested for celiac - he has had reflux since he was a baby (repeatedly on prilosec, I think it was) and has bad allergies to dogs/cats (and hay fever to a lesser extent). I'm probably just being an over-concerned parent but the skin issues, in my opinion, signal internal issues. Anyway, it just sucks feeling like something's wrong but I never seem to make any progress (and I meet a lot of resistance from family too)! I appreciate your help/advice though. There's so much knowledge here - it's just awesome!

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Ah! I had a long post with more info but it seemed to disappear (all my posts need mod approval since I'm new so maybe that's why).

 

(sorry!  it should be still there, just out of sequence because there were other replies after that one)  :)

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(sorry!  it should be still there, just out of sequence because there were other replies after that one)   :)

No worries! 

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Oh I see. That's why I didn't know. It was like cross posting happens.

Okay. I understand where you're coming from & I don't think you're overreacting; you're just keeping a weather eye out & rightly so! Well, there's nothing to keep you all from going gluten-free. The only thing with your kids is that an official dx would make things easy for school b/c you could prove to them that he/they need to eat gluten free. That may be an issue, so you have to decide how to proceed & I don't envy you the decision ~~~ it's a tough one.

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Oh I see. That's why I didn't know. It was like cross posting happens.

Okay. I understand where you're coming from & I don't think you're overreacting; you're just keeping a weather eye out & rightly so! Well, there's nothing to keep you all from going gluten-free. The only thing with your kids is that an official dx would make things easy for school b/c you could prove to them that he/they need to eat gluten free. That may be an issue, so you have to decide how to proceed & I don't envy you the decision ~~~ it's a tough one.

Yes, I would love an official diagnosis if he does have celiac. It would be better for school and it would make it easier for our family to accept it. If I were to make my son gluten free without a diagnosis I can guarantee my parents and my inlaws would disregard it. Oh well...

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I completely understand. And it's frustrating for you as it's like being caught between a rock & a hard spot.

 

Hang in there.

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I completely understand. And it's frustrating for you as it's like being caught between a rock & a hard spot.

 

Hang in there.

Thanks! I have a doc appointment for my son on Monday. If anything comes out of it, I'll post :). Thanks again!

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What did the doc say?

I have had a rash that looks just like that, only more read, my whole life, have just reasently started to wonder if it might be DH...

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What did the doc say?

I have had a rash that looks just like that, only more read, my whole life, have just reasently started to wonder if it might be DH...

Sorry - I only checked this now... his doctor looked at it and said it was nothing. I am assuming he's correct and that it isn't DH but I still feel it seems fishy. Just not indicative of anything in particular. I have come to the conclusion that I need to figure out my own health first and get an appropriate diagnosis for myself before I can help my kids with their concerns. Hope you are able to sort out your own health as well :)

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Looks like my rash ... CAn they do a swab test? Mine is on my back 

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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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