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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    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

    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
×
×
  • 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.