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Help? Strange Rash. Doctors Can't Identify. Photos.
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3 posts in this topic

Hi! This is my first post :)

 

I'm still in the middle of the diagnosis process (blood work for food allergies-negative, colonoscopy/endoscopy-scheduled, elimination diet-successful).

 

To make a long story short, I'm highly sensitive and have been off gluten (all grains except rice) and dairy for 11 months. I wanted to try reintroducing gluten (while controlling for dairy) at least one more time before having all of the unpleasant GI tests done.

 

The first time I reintroduced gluten since my initial gluten challenge was this February (9 months after going gluten-free). All of my usual symptoms returned, except that I got a weird new rash on both of my thighs. I only had one serving/day of gluten for four days and the rash showed up after a couple of days. So I stopped eating it, and the rash went away.

 

Then I reintroduced it again for four days in mid-March (10 months) and the rash reappeared on my thighs, again after a few days. So I stopped eating it and went in for allergy testing--negative.

 

Then last week, I was glutened from a cross contaminated olive oil "mayonnaise" jar (I'm that sensitive), and the rash reappeared. 

 

I've had a total of 4 doctors look at it and none of them have any idea what it is. 

 

It doesn't itch, it's completely smooth/flat to the touch, and it doesn't blanch or fade when I press on it. My only guess is that it's a mild case of petechiae or purpura, as it looks like I'm bleeding under my skin. It's primarily on my thighs, but I have a bit on my hips as well. And it does go away, albeit gradually.

 

My PCP/internist said she could refer me to a dermatologist, but she thinks that it's more imperative that I get in to the GI for a colonoscopy/endoscopy. 

 

Any ideas? I'm so sick of being sick :(

 

https://www.flickr.com/photos/101624582@N05/13588883273/

https://www.flickr.com/photos/101624582@N05/13588841195/

https://www.flickr.com/photos/101624582@N05/13585386044/

https://www.flickr.com/photos/101624582@N05/13585005635/in/photostream/

https://www.flickr.com/photos/101624582@N05/13585384024/in/photostream/

Edited by MsHolland
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I have a petechia type rash on the tops of my feet, "crawling" up to my ankles, and a smidge on the tops of each hand.  My GP/GI said he didn't have a clue,  This was about a year ago, and now it is back.  The first time, it started on my left hand and I thought it might be a nickel allergy to a cheap watch.  Then it went to my feet.  I was taking Biotin at the time and the GP/GI thought maybe it was that, but he said go see a dermatologist. I never did.  I put aloe gel on it, and also hand lotion to soothe it.  I still don't know what it is, but most of the stuff I read leads to allergies.  

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I have a petechia type rash on the tops of my feet, "crawling" up to my ankles, and a smidge on the tops of each hand.  My GP/GI said he didn't have a clue,  This was about a year ago, and now it is back.  The first time, it started on my left hand and I thought it might be a nickel allergy to a cheap watch.  Then it went to my feet.  I was taking Biotin at the time and the GP/GI thought maybe it was that, but he said go see a dermatologist. I never did.  I put aloe gel on it, and also hand lotion to soothe it.  I still don't know what it is, but most of the stuff I read leads to allergies.  

 

Interesting.

 

I intentionally haven't been taking any vitamins lately--even though I was very excited that I found some nice gluten-free, DF, corn free, soy free, prenatal multivitamins! I've decided that I'm basically just going to let my body get as sick as it wants to, and then let the doctors figure out what's wrong with me :( Should be tons of fun.

 

Apart from being frightening, my rash isn't irritating or uncomfortable, so I haven't put anything on it other than my usual Cetaphil body lotion. It is spreading though. It started on my thighs, then it appeared on my hips, and now it's on my lower legs. And it's symmetrical on both sides of my body. I know that's a characteristic of DH, but this rash doesn't itch. 

 

I'm almost positive it's petechiae. My guess is it's a symptom of a vitamin K deficiency from malabsorption. But it's definitely my body bleeding under the skin. It looks just like the second photo on this webpage:

 

http://insidetheclinic.com/petechial-rash-pictures-symptoms-causes-treatment/

 

Have you been allergy tested, Singer?

Edited by MsHolland
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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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