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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac With Itchy Legs - No Rash
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19 posts in this topic

Hi everyone..

I'm new to the site but I thought I would see if anyone else is having this problem. Hoping for suggestions.

I was diagnosed with celiac almost 2 years ago now and have been gluten-free since. The only time I have it is when it's no control by me which is usually cross contamination which then I get sick immediately and break out on my face and chest with a rash.

Anyway, for the past 6-7 months now.... I have had extremely itchy legs from the knee cap down. I have not changed any of my products.. Household or personal. My legs are not dry as I put lotions on them daily after shower. There is no rash at all or redness until after I scratch them. Sometimes I scratch so much that they bleed. The only thing that seems to help is if I put ice packs on them. I have tried every lotion, cortisone, creams, EVEryTHinG and nothing seems to help. They keep me up at night they itch so bad. I have mentioned to my dr and was suggested to take Benadryl but it hasn't done a thing.

My dr put me on prednisone for another problem with my back and when I was on that for 5 days, it actually stopped, but I certainly don't want to go on that forever.

Anyone out there have any suggestions or is goin thru the same thing? Summer is hopefully around the corner and I would like to show off my long legs but right now they look horrible from the scratching and bleeding.

Sorry for it being so long...

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Might have nothing to do with Celiac at all.  MY\y son found that parts of him would be itchy (no hives) no matter how much lotion he used.  He found that some soaps, detergents, lotions  and shampoos started making him itch.  He found if he switched to the fragrance free clothes detergent and "all natural" shampoos & Cerave lotion - the itching is gone.  MIght be an allergic reaction to something in the soaps.  That is all we could figure out.  Allergies can pop up at anytime.

 

He was at a hotel and the sheets were making him itch.  He put a t shirt over the pillow and put on socks, long sleeved shirt and pants and that took care of it

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I already do use fragrance free and always have... I'm a creature of habit and have been using the same products for years.

The odd thing is its mostly at night... Don't have the problem when I'm at work or even out and about.

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I second the allergic reaction idea. Is there anything you only use at night?

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It could be an allergic reaction, as has already been said. I have a similar problem on my stomach and have been using something called Sudocrem - I don't know if you can get it in other countries, I'm in the UK. That seems to calm it down, as it drives me daft, and I've actually bruised my skin with scratching, as well as making it bleed. I've also started using a different shower gel, which has no additives and perfumes etc.,which has helped.

Word of warning, do not use prednisone for long periods of time, it can cause diabetes and Cushing syndrome and other problems.

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Thanks all for your replies...

What would the allergic reaction be from if I haven't changed anything in years? I've used the same products forever and if it was that, why only at night.

And yes I know about prednisone being bad, I didn't even finish the while dose because of reactions. That stuff is nasty. I just found it odd that when I was taking it, the itching got much better.

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Thanks all for your replies...

What would the allergic reaction be from if I haven't changed anything in years? I've used the same products forever and if it was that, why only at night.

And yes I know about prednisone being bad, I didn't even finish the while dose because of reactions. That stuff is nasty. I just found it odd that when I was taking it, the itching got much better.

As stated already, allergies tend to pop up out of nowhere.

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That's true... So how do I find what it is and what to do about it??

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I have itchiness in my legs, too!  It's an itch that just seems to take over and nothing will help!! I don't get it all the time...I do notice it more after a glutening.  For instance, yesterday I made a HORRIBLE mistake and ate something that had gluten (I wasn't aware)...Last night, the itching was out of control.  Heat seems to help!  I think it's somehow linked to the Celiac...like all the toxins trying to get out of my body someway, somehow!!  Is your itchiness constant?? 

 

BEST OF LUCK!!

 

-JM

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I've had this exact same thing. I'm fine in the day, then I try to go to sleep and BAM! Itchy legs! No spots, no dryness, no nothing. Drives me mental. Had no idea it might be a gluten-smashing thing! I assumed it was bugs or something or something in awful university flats.

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I have itchiness in my legs, too!  It's an itch that just seems to take over and nothing will help!! I don't get it all the time...I do notice it more after a glutening.  For instance, yesterday I made a HORRIBLE mistake and ate something that had gluten (I wasn't aware)...Last night, the itching was out of control.  Heat seems to help!  I think it's somehow linked to the Celiac...like all the toxins trying to get out of my body someway, somehow!!  Is your itchiness constant?? 

 

BEST OF LUCK!!

 

-JM

Mine is not constant... it's only at night.  I have spoken with my dr and they don't think it's allergies when I haven't changed anything and if it was that... it would be constant.  I don't believe it's a gluten reaction either because I haven't had any gluten that i'm aware of, and I would certainly be feeling it other places if I was getting it.  The only thing that soothes mine is ice packs on them.  I have even gone to bed with ice packs just so I can sleep.

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I've had this exact same thing. I'm fine in the day, then I try to go to sleep and BAM! Itchy legs! No spots, no dryness, no nothing. Drives me mental. Had no idea it might be a gluten-smashing thing! I assumed it was bugs or something or something in awful university flats.

I actually thought the same thing about bugs.... but it happens even when i'm sitting on the couch when I get home from work.  Up until bed and then all night long.  I went out of town last weekend and even had it at night in the hotel... I have even gone to some friends house and it still is only at night.

There is no rhyme or reason to it at all and it drives me crazy!!!

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I had something like this. It drove me nuts. I could never figure it out and what caused it. Finally after a month or two it just stopped. I was never able to figure out what caused it or made it go away. Good luck.

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I have to wonder if this is neuro, rather than topical.  Recheck all labels, manufacturers change components all the time.  Also, perhaps this is a variation on "restless" leg syndrome?  Since the prednisone worked, it is apparently an inflammatory process, perhaps trying the "anti-inflammatory" diet would help?  Good luck!

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This happened to me and it was from a magnesium and potassium deficiency caused by celiac.

 

Use magnesium malate or glycinate (not oxide) and increase potassium rich foods now.

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I think it is a deficiency, I had the same problem now it's very rare and very minimal. It was worse for me through my pregnancies, it was nerves in my legs that's why when I tried lotions and things nothing helped. When I started taking supplements and eating mostly fruits and veggies it got better. I can't tell you what kind of deficiency because I never tried to single it out was just glad it was gone.

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I think it is a deficiency, I had the same problem now it's very rare and very minimal. It was worse for me through my pregnancies, it was nerves in my legs that's why when I tried lotions and things nothing helped. When I started taking supplements and eating mostly fruits and veggies it got better. I can't tell you what kind of deficiency because I never tried to single it out was just glad it was gone.

I did just start taking a womans one a day multi vitamin.... i'm hoping that will help.  

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I've heard that cutting them in half and taking one in the am and one in the pm helps absorbtion

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I have to wonder if this is neuro, rather than topical.  Recheck all labels, manufacturers change components all the time.  Also, perhaps this is a variation on "restless" leg syndrome?  Since the prednisone worked, it is apparently an inflammatory process, perhaps trying the "anti-inflammatory" diet would help?  Good luck!

That was my suggestion, they change things all the time, re-check the labels.  If you see an unknown name google it.  I have found in the past year, that gluten is in so much, and its sneaky.  Itchy skin is one of my gluten clues.  Its in nail polish, who ever would have thought of it being in nail polish?  I could rant on this, because it has snuck up on me so many times, but just check your labels.

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