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

Restless Legs


Lady Eowyn

Recommended Posts

Lady Eowyn Apprentice

Having been undiagnosed for many years have had plenty of time to become aware of symptoms and can usually relate to just about every post on here!

Wanted to mention that I get bouts of restless legs (mainly right leg actually) but also a general restlessness.

I'm pretty sure that it's gluten related (response on the day) and restless by evening.

Have struggled this summer (well all along really - since gluten free 2011) with cc and am super sensitive. I get the impression that lots of foods are like just too complicated for my outraged system to manage. Can't eat any processed food, rice ( :( ) or potatoes.

Have gone back to basics lately, but for the last week have suffered restless legs each evening. Have had it in the past as well and have also associated it with low iron.

Anyone else had this ? or any suggestions please.


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



Celiac.com Sponsor (A8-M):



Pegleg84 Collaborator

Hi Eowyn

I get restless leg too, usually at night and yes, usually if I've been glutened (though sometimes alcohol related), though also feel slightly twitchy sometimes during the day if I've eaten something I shouldn't have. I also have problems processing anything too "complicated", like brown rice and quinoa, and can't do dairy or soy.

Restless Leg Sydrome is common with Celiac, so you're not alone there. Hopefully it will get better as you heal and you figure out what your gut can handle.

As for what to do about the restlessness (especially those painful spasms!), they say to keep hydrated. Hopefully someone else can chime in with other suggestions.

Cheers

Peg

Lady Eowyn Apprentice

Aahaa! Dehydration - get that too, although I drink plenty of water.

Another of my gluten signs - terrific thirst. Also I think gluten (and soy) make me sweat, as in big hot flushes that can last an hour, so I try to keep drinking. Hadn't thought of that with the restless legs but will start on the water to see if that helps.

Am in denial over dairy - although only have milk in coffee. Have reaction with cheese and cream but can live without them, so no problem.

It's all inconvenient - moan, moan, moan. Sorry - just having a moan :wacko: !

Thanks for the reply Peg - that twitchy in the day - know that too.

Pegleg84 Collaborator

I was in dairy denial for a long time before I bit the bullet and cut it out. I miss cheese like crazy though.

Resless leg is also aggravated by stress (er, gluten causes that too) and low iron (that too!), so yeah, Celiacs are more prone to have problems with it.

So, stay away from the evil gluten, try to cut out milk as much as possible (almond milk is delicious in coffee and cereal), and hope you feel better

Peg

love2travel Mentor

My chronic pain doctor put me on a high dose of Magnesium Glucinate (1200 mg daily). It really helps with my RLS (and I have tried many things). Be careful if you start taking Magnesium as it can cause diarrhea until you are used to it.

  • 3 weeks later...
Jeanah64 Newbie

My doctor put me on ropinerol ,which is a generic for requip. This really helps me ! I hav rls so bad I need to take the medicine on long car rides.

tarnalberry Community Regular

I also was on meds for RLS for a while. Part of it appears to have been caused by low iron stores - not anemic, but something my body needed fixing. It was bad and was significantly affecting my sleep and contributing to fibromyalgia, so the meds were really very helpful for me. I've been fortunate that, after going off them to have my daughter, I haven't needed to go back on them. But I'm also no longer working the stressful job that I have, and that has really made a significant difference in my health too.


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



Celiac.com Sponsor (A8-M):



JDThornton Newbie

Calcium is a natural muscle relaxant, and when we cut out dairy, we tend to not get enough. Do you take a non-dairy calcium supplement? It might help.

I have RLS too, and sometimes if it's really bad I have a little valerian tea; it tastes horrible, but I mix it with peppermint and chamomile or catnip, which are also relaxants. Helps a lot, and I sleep like a log. But you have to have 8 hours of sleep at least when using valerian (I think it does come in pill form, but I like natural herbs, so I've never tried it).

Good luck!

Lady Eowyn Apprentice

Hi

Thanks for the replies.

Have thought about low calcium before as I believe it can trouble celiacs. The small amount of milk in coffee is probably completely cancelled out by the caffeine anyway!!

Have always had issues with taking vitamin/mineral supplements (they make me ill in varying ways) although in the past they may of course, had gluten in them. I take a Vitamin D tab now each day with no problem - amazing for me!

About three years ago I took calcium tabs each day for about two weeks (I think) but ended up at docs with constant stomach pain (lower right) and was sent to hosp with suspected appendicitis. Tests found nothing but pain was terrible (and of course, they fed me toast :wacko: ). When I got home, I took loads of laxatives and solved the problem - I think it was a version of constipation. Luckily, not had it since but would be very cautious about taking calcium supplements again. Would like to point out that this was pre-gluten-free!!! Would also point out that I still suffer constipation but not the same as above.

Last week have bought a yoghurt maker and am making the scd diet 24 hour yoghurt which apparently uses up all the lactose and is full of good bacteria. Have eaten two small amounts so far with no problem so I am hoping this will be fine for me and healthy!

Am still getting the restlessness - body sort of not at ease and comfortable - so I think I will have to resort to the iron tabs again aswell.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,211
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.