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 Syndrom (rls)

Smitten

By Smitten
in Related Issues & Disorders

Recommended Posts

Renae Newbie
Renae
Posted
Thanks for all your thoughts about this. My husband is always asking me if I can please stop moving my legs around in bed. Besides the movement, he also has to endure the clicks from my knees, which he is convinced I make happen just to annoy him. (most of my joints move a bit too freely - related to Ehlers Danlos syndrome - some of them are quite noisy when they move)

I had never thought about restless legs in relation to c.d. - interesting to realise that other coeliacs also have a hard time being still.

Hi,

My 8 year old daughter has celiac and my 16 year old daughter has Ehlers Danlos (EDS). She has tested negative for Celiac. This is the first reference to EDS I've seen. Is there any connection between the two that you know of?

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

Celiac.com Sponsor (A8-M):


  • Replies 88
  • Created
  • Last Reply
BARLEY MISSING Newbie
BARLEY MISSING
Posted

Hi

Just was browsing the topics and this really took my interests as I too had and yes I said HAD restless leg syndrome and as you my husband just could'nt sleep or neither could I. I blamed it on the flannnel blankets, too much exercise, not enough exercise as I stopped thinking it was that. One day my sister looked at me and told me she had rls and the doctor told her that her Iron was down and she told me that when she got her Iron back up that her rls stopped, as so did mine but the only difference was I was diagnosed with Celiac as she wasn't , so is it the Celiac or Low Iron?

Karen B. Explorer
Karen B.
Posted
Hi

Just was browsing the topics and this really took my interests as I too had and yes I said HAD restless leg syndrome and as you my husband just could'nt sleep or neither could I. I blamed it on the flannnel blankets, too much exercise, not enough exercise as I stopped thinking it was that. One day my sister looked at me and told me she had rls and the doctor told her that her Iron was down and she told me that when she got her Iron back up that her rls stopped, as so did mine but the only difference was I was diagnosed with Celiac as she wasn't , so is it the Celiac or Low Iron?

Low iron could be due to the Celiac. Anemia is one of the primary symptoms.

debmidge Rising Star
debmidge
Posted

RE: low iron

Does the iron level have to be below the norm? Anyone else have normal iron levels and RLS? (hubby's situation).

Also for him, anti depressants make RLS a lot worse - to point need to stop the anti depressants immediately.

janjal Newbie
janjal
Posted

Hi, I wake up with muscle cramps in my legs at night. It only happens maybe once every couple of weeks, but it might get me up pacing around the room three times during the night. I have taken calcium magnesium tablets for years. It seems worse when I don't drink enough milk.

I also have been anemic, and I have always loved chewing ice. That is really weird. I have had high liver enzymes over the last 12 years. That was one of my symptoms that the doctors could not figure out. My doctor retired and the new one figured out that I had celiac's. I had a biopsy done with a gastro doc.

natalie Apprentice
natalie
Posted
Crushed Ice was the BEST! I even craved cool air during my pregnancy WEIRD. I would get in the car and turn the air on high and just soak it in (obviously I was preg in the summer). I wasn't even hot.

Shelly

When I was pregnant with my first I took a picture of my husband at the breakfast table eating his cereal... he was wearing his parka, a winter hat and mittens ( in July) because I had the ac so cold. I used to be so hot!

itsmerob Newbie
itsmerob
Posted

My doctor suspects I may have Celiacs Disease, because of the symptoms I have been getting. Stomach pains, diahorrea, gas, tirdness. What I have had for a number of years is restless legs, mainly in my calf muscles, but for the past 12 months I have been getting it all over my body, chest, whole of my legs, arms, even my face and neck. It does seem like a coincidence that as my suspected celiac symptoms have got worse over the past 12, so have my restless limbs. As anyone else had any similar problems?

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

Celiac.com Sponsor (A8-M):


ACK514 Rookie
ACK514
Posted
Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

I have the same issue! I've only known that I have celiac for about 4mos now but i've had symptoms of RLS for years. I've been told that it can be tied to an iron deficiency which makes sense because due to celiac, I'm very low on iron. I've found that taking my multivitamin and my iron pills greatly decrease the symptoms. Also the days that I accidentally eat gluten I have jumpy legs at night. Hope that helps!

Ooni Newbie
Ooni
Posted
Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

Ooni Newbie
Ooni
Posted

I have restless leg syndrome & I find that walking helps. I also had Klonopin for anxiety, and my gynocologist told me that it is also used forRLS. I tried it and it works. You have to be careful with it since it is a narchotic.

ariesmama Newbie
ariesmama
Posted
Hi

Just was browsing the topics and this really took my interests as I too had and yes I said HAD restless leg syndrome and as you my husband just could'nt sleep or neither could I. I blamed it on the flannnel blankets, too much exercise, not enough exercise as I stopped thinking it was that. One day my sister looked at me and told me she had rls and the doctor told her that her Iron was down and she told me that when she got her Iron back up that her rls stopped, as so did mine but the only difference was I was diagnosed with Celiac as she wasn't , so is it the Celiac or Low Iron?

Hi,

Was also just browsing...My mom and I both have rls, we both have celiac disease(self diagnosed, both of us), and I am also low in iron. I take iron pills, calcium pills, and other vitamin pills, but what really works to stop the rls for me is magnesium pills. I take 500-100mg in magnesium supplement vitamins(jamieson, 250mg tabs, horse pills) when the rls gets really bad and it just stops...

The Lovebug Rookie
The Lovebug
Posted

I have celiac disease but not restless leg syndrome, while my husband has restless leg syndrome but not celiac disease. So I don't see any correlation. That said, my husband's RLS is so bad that I made him go to a sleep clinic. It was interfering with my sleep as well as his. Long story short, his sleep analysis indicated that he had leg movement 57 times an hour (or approximately one jerk every minute all night). No wonder he got up every morning feeling more tired than he had the night before. He yawned all day and took at least one two-hour nap every afternoon that he could. They gave him a prescription for Requip and it has been a miracle drug for him. We are both sleeping so much better! The secret is that is has to be taken 2 hours before bedtime. The couple of times that he has forgotten to take it with him on a trip, or his prescription ran out, he has a reaction which resembles epilepsy. So I guess that is a side effect of the drug withdrawal. But we're firm believers in Requip for RLS.

  • 2 months later...
320 days Newbie
320 days
Posted
Anyone else out there have RLS? If so, what do you do to try to relieve this? I can be up hours in the night with the constant erge to move my legs! Any suggestions would be appreciated!

Thanks!

RLS can make one want to die. Trying to keep on an even keel is important to me. Two hours sleep last night. Not too successful, but not just the leg thing.

Supposedly there are some of the antidepressants that can help if you happen to be on them. There is the new drug on the TV. I used to have it MUCH more and thank whatever that it is rare now.....

  • 8 years later...
dopaminegirl Apprentice
dopaminegirl
Posted

RLS is significantly more prevalent among the celiac population than the general population, so I think there's definitely a correlation. Unfortunately, it doesn't aways go away once you go gluten free. There's also a link between RLS and inflammation, and, for me at least, most of my post-glutening symptoms can be linked back to generalized inflammation. 

For me, RLS is one of the first indications for me that I've been glutened (right after arthritis/muscle aches and dry mouth), though it's more of a "restless body syndrome" since it doesn't confine itself to my legs. I'm fortunate that it goes away as long as I'm gluten-free, I know many people aren't so lucky. This last time (currently recovering from being glutened at Thanksgiving *sigh*) I ended up getting up and playing video games till 4 in the morning. In retrospect, I probably could have used that time to do dishes or something more productive...

Only thing that ever works for me is to get up and move around and stretch as much as possible, I've been known to do some 2 am yoga, I know my dad used to go for walks around the neighborhood. Don't resist it, don't lay in bed and try to stay still, I really think that's the worst thing you can do. Get up and use your muscles and tire them out and hopefully that will help. If you have flexibility in where you have to be and when the next day, you can always try to do productive things and then sleep in once things have calmed down. Otherwise, caffeinate the next day and hope the next night will be better.

Archived

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

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
    3. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      Scott. Thank you for your reply. I'm still having symptoms, but significantly better. I will go back to batch cooking and freezing vegetables. I have had success with Pict Sweet frozen, single item (not mixed) vegetables. My Kroger carries very little Pict Sweet variety. Regards, Yaya
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I am hesitant to post this as I have seen many people here recommending RO water. With that said, I want to share my experience and how RO water now impacts me. Three or four years ago a local store installed a RO water refill station. I had been buying gallons of distilled and spring water prior to that. I switched over to using the RO water refill station...
    5. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,443
    • Most Online (within 30 mins)
      7,748
    Squirrel75
    Newest Member
    Squirrel75
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.