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Confused and frustrated

Pinkdaisygirl

By Pinkdaisygirl
in Dermatitis Herpetiformis

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Pinkdaisygirl Newbie
Pinkdaisygirl
Posted

Hi all!  I've been reading stuff on this forum for about three years now and I have to say thank you!  This is an amazing site and has answered so many questions. I was diagnosed by a chiropractic physician a few years ago with celiac disease so I have no official celiac doctor and am extremely frustrated. I have read a few other posts about this too. I seem to be getting more and more sensitive as the days go on. I have celiac disease and also dairy allergy and seem to be allergic to tapioca and Shea as well. But I'm not sure what else. This year I have developed a rash that appears to be dh?  It's itchy but when i scratch or even touch it it feels like it's on fire!  But it acts and looks different depending on where it is on my body. Started in the middle of my chest - yep super uncomfortable and then spread to my upper back. Both of those areas cleared up but it had also spread up the back of my neck and even into my hairline somewhat. Seems like every time it starts to go away then it suddenly gets worse. I have changed my shamooo, my conditioner, my soap I use in the shower, no more hair products everything. I'm so frustrated. I can't figure out what it may be that makes it not want to go away. I use wintergreen rubbing alcohol on it a lot bc that seems to help it dry up faster. Also I do use essential oils a lot instead of medicine. They are pure and natural oils and shouldn't contain any gluten as nothing is added to these particular oils. I'm wondering if maybe the oils are irritating it?  Or is there anything else that you all may know of that could be keeping this rash active?  I use All Free and Clear laundry soap, I switched to Naturelle brand shampoo - no conditioner right now (very dry frizzy hair ATM) no hair products. I was using plain glycerine soap - yuck! And am going to try kirk's Castile soap tonight. Any suggestions would be greatly appreciated. Anything to help the rash go away, stay away, feel even a tiny bit better, anything. Thanks. 

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kareng Grand Master
kareng
Posted
8 minutes ago, Pinkdaisygirl said:

Hi all!  I've been reading stuff on this forum for about three years now and I have to say thank you!  This is an amazing site and has answered so many questions. I was diagnosed by a chiropractic physician a few years ago with celiac disease so I have no official celiac doctor and am extremely frustrated. I have read a few other posts about this too. I seem to be getting more and more sensitive as the days go on. I have celiac disease and also dairy allergy and seem to be allergic to tapioca and Shea as well. But I'm not sure what else. This year I have developed a rash that appears to be dh?  It's itchy but when i scratch or even touch it it feels like it's on fire!  But it acts and looks different depending on where it is on my body. Started in the middle of my chest - yep super uncomfortable and then spread to my upper back. Both of those areas cleared up but it had also spread up the back of my neck and even into my hairline somewhat. Seems like every time it starts to go away then it suddenly gets worse. I have changed my shamooo, my conditioner, my soap I use in the shower, no more hair products everything. I'm so frustrated. I can't figure out what it may be that makes it not want to go away. I use wintergreen rubbing alcohol on it a lot bc that seems to help it dry up faster. Also I do use essential oils a lot instead of medicine. They are pure and natural oils and shouldn't contain any gluten as nothing is added to these particular oils. I'm wondering if maybe the oils are irritating it?  Or is there anything else that you all may know of that could be keeping this rash active?  I use All Free and Clear laundry soap, I switched to Naturelle brand shampoo - no conditioner right now (very dry frizzy hair ATM) no hair products. I was using plain glycerine soap - yuck! And am going to try kirk's Castile soap tonight. Any suggestions would be greatly appreciated. Anything to help the rash go away, stay away, feel even a tiny bit better, anything. Thanks. 

How did your Chiropracter diagnose you with Celiac?  I am  pretty sure he didn't biopsy your rash or small intestines.  Also, are you actually allergic or just seem to have upset stomach issues with these other foods?  Are they causing a rash?  If you are really gluten free for 3 years, this rash may have nothing to do with gluten.

cyclinglady Grand Master
cyclinglady
Posted

It might be worth going to a MD and getting a celiac blood test and a referral to a dermatologist for a skin biopsy (make sure he/she is celiac savvy).  Your antibodies could be elevated (or maybe not).  You could be getting gluten exposure somehow.  But, as Karen said, it could be completely unrelated to gluten.  Wish I could be of more help.  

Ennis-TX Grand Master
Ennis-TX
Posted

One of the allergies I developed and has gotten worse over the years was corn, and I get a allergic rash with a burning sensation when ever something made of corn, or contains corn contacts my skin. Celiac disease does odd things to ones body especially in the immune system department, you might have come down with a odd allergy to something in you laundry detergent, a essential oil, soap, etc. and it could be something you use everyday without thinking. It could really be anything, agree with the others here perhaps go see a MD, I might suggest getting a complete allergy test done both skin prick and blood, and as cyclinlady mentioned getting a good dermatologist.

Pinkdaisygirl Newbie
Pinkdaisygirl
Posted
  • Author
On 11/14/2016 at 11:44 PM, kareng said:

How did your Chiropracter diagnose you with Celiac?  I am  pretty sure he didn't biopsy your rash or small intestines.  Also, are you actually allergic or just seem to have upset stomach issues with these other foods?  Are they causing a rash?  If you are really gluten free for 3 years, this rash may have nothing to do with gluten.

Thanks. Yes I am sure it is celiac. We did some stool testing and years of seeing him - he has it too - but mainly my symptoms for gluten are my head spins very badly, I get a little nauseous sometimes, and sometimes it's just a horrible migraine that lasts for days. This skin issue has started within this last year and it's terrible. I live in a small town and have no medical insurance except for Medicaid and there aren't many specialists in my area. I'm going to have a physical done soon and am going to inquire for a referral. Thanks for responding. It means so much to have others who know your misery sometimes :) 

yea I am wondering if my rash may have more to do with the essential oils I have been using or a new reaction to something I've been using for a while. There's nothing bad in them though and have used them for a few years now too. But I am noticing that new things crop up often. 

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