Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recommended Posts

Renae Newbie
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

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
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

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

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
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

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
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
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

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
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

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
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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,363
    • Most Online (within 30 mins)
      7,748

    NAC
    Newest Member
    NAC
    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

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...