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Full Body Rls-Type Feeling?
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2 posts in this topic

I'm in the last week of an 8 week gluten challenge, my endoscopy is on Wednesday and it could not come soon enough. I have managed okay, the worst of my symptoms being anxiety and truly horrible brain fog that has steadily gotten worse and worse. But anyway a few days ago I got what I think is a new symptom from the gluten, and being that I am feeling very paranoid I wanted a little reassurance.

I had restless leg syndrome as a kid and again in my mid-teens, but it had mostly gone away and for the past two years would just pop up for a few hours three or four times a year. When I would get it was like a buzzy, itchy-under-the-skin feeling in the bottom of my feet and in my calves, and it would keep me awake because it felt so awful to just lie there.

So now I have that, only it's everywhere. In my feet, in my legs, in my shoulders and hands and arms and even in my stomach. It's making me feel really hyped up and anxious and completely crazy. It's not constantly there, it kind of comes and goes but it is there probably 70% of the time.

Has anyone heard of this? Is it just another awful side effect that will fade after I get off the gluten? I'm so close to being done, I can hold out for another five days but I'm a bit of a hypochondriac and I was hoping someone else would have some helpful input. Thank you!

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Eclara,

I have that feeling right now. I get it every time I get glutened and found your question while Googling it.

Kai

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    • I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred!  Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh.  Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!! You've convinced me there is more than ample reason to strongly suspect it's dh.  Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy. BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born. A dx of dh IS a dx of celiac disease & no further testing is needed. Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief.   
    • Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color. I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.
    • I am so sorry for your suffering.  Your story drives home the point that having Celiac Disease drives us all to do our own research and try to find a doc to help--if we are lucky. I wish you a speedy recovery and my most earnest wish that you are NEVER cross-contaminated again! You are a real trooper (little comfort, I know).  Wish I could do more.
    • Tell us how it acts please. Just looking at pictures doesn't give much info. It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.
    • Karen is right.  Do the research.  Have you been tested for celiac disease? Here is more info..... http://www.cureceliacdisease.org/screening/
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