Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac With Itchy Legs - No Rash

msmissydb

Recommended Posts

msmissydb Newbie
msmissydb
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

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

msmissydb Newbie
msmissydb
Posted
  • Author

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.

shadowicewolf Proficient
shadowicewolf
Posted

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

flowerqueen Community Regular
flowerqueen
Posted

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.

msmissydb Newbie
msmissydb
Posted
  • Author

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.

shadowicewolf Proficient
shadowicewolf
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


msmissydb Newbie
msmissydb
Posted
  • Author

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

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

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

utahraptor Newbie
utahraptor
Posted

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.

msmissydb Newbie
msmissydb
Posted
  • Author

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.

msmissydb Newbie
msmissydb
Posted
  • Author

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!!!

Googles Community Regular
Googles
Posted

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.

frieze Community Regular
frieze
Posted

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!

gluten-is-kryptonite Apprentice
gluten-is-kryptonite
Posted

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.

Brandiwine Contributor
Brandiwine
Posted

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.

msmissydb Newbie
msmissydb
Posted
  • Author

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.  

Brandiwine Contributor
Brandiwine
Posted

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

surviormom Rookie
surviormom
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,718
    • Most Online (within 30 mins)
      7,748
    naez0923
    Newest Member
    naez0923
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.