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 Leg Syndrome

Wolicki

Recommended Posts

Wolicki Enthusiast
Wolicki
Posted

I am in bed, trying to go to sleep but my legs won't let me! I nver had this problem booefore going gluten-free, but now I have it almost every night :( Did anyone else get this after starting the diet? Just curious...............

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

Yes. I developed fibromyalgia and restless leg *AFTER* being gluten free (for four years) and casein free (for three years). For me, at least part of the problem was low iron - just borderline low, but still low. I suspect the same stress that instigated the celiac was leading me to not absorb enough and need too much iron.

Until my pregnancy, I took a very low dose of Mirapex for the restless leg, and it was WONDERFUL. An extended period of time with poor quality sleep is just awful and messes with your whole life. Taking supplemental iron has definitely helped keep it at bay during my pregnancy, but it could be better.

Frances03 Enthusiast
Frances03
Posted

YES, and I just developed it after i went gluten free and that's only been almost a month. But I do have low iron, and the restless leg has improved since starting iron supplements. It's not GONE yet but it's not as bad. It starts ever night as soon as I go to sit down and relax. Have you had your iron levels checked? That might help!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Both the symptoms of restless leg syndrome and low iron may be linked with B12 deficiency (also called "pernicious anemia"). Celiacs are at increased risk of developing B12 deficiency due to malabsorption and we also have a very high rate of using acid blockers, which can cause B12 deficiency (you NEED acid to properly absorb B12).

According to the B12 sites, some formulations of B12 absorb far better than others. They seem to universally recommend methylcobalamin over cyanocobalamin (the kind in most multivitamins), and they all recommend the sublingual form rather than the tablet form. Folic acid is also important (consider that the lack of it has been pinpointed as the cause of spina bifida), and is in some sublinguals.

Most of the gluteny bread products and cereals we used to eat WERE "fortified" with B-vitamins and folic acid, and perhaps that really did make a difference?

Wolicki Enthusiast
Wolicki
Posted
  • Author

I have had my iron checked. Most indicators are in hte normal range, but my Ferritin is low and iron stores are low. I've been on ferrous sulfate for a month, and will be starting Ferrex in the next few days. Definitely have not seen an improvement with the OTC.

What iron supplements are y'all taking?

ang1e0251 Contributor
ang1e0251
Posted

I have the restless leg after going gluten-free. I keep mine under control with magnesium and Sublingual B12. The B12 is the key. If I forget it, I feel that squirmy feeling coming back so I get up and take it. Soon the feeling is gone. I never tried to change my iron intake.

tarnalberry Community Regular
tarnalberry
Posted
I have had my iron checked. Most indicators are in hte normal range, but my Ferritin is low and iron stores are low. I've been on ferrous sulfate for a month, and will be starting Ferrex in the next few days. Definitely have not seen an improvement with the OTC.

What iron supplements are y'all taking?

It was only my ferritin that was low. I take the same thing - ferrous sulfate. I had been taking SlowFe, but switched to a liquid during my first trimester when pills did not sit terribly well in my stomach. Prior to that, I tolerated it completely fine.

(It's worth noting, that I had previously been on regular B-supplementation (not just B-12, but definitely getting plenty of that as well), in addition to 1000mg Ca and about the same in magnesium per day - some from the cal/mag/D and some from the malic acid I was taking as well. For me, it was the iron specifically, but it's important to check out all the possibilities if that doesn't help.)

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

Celiac.com Sponsor (A8-M):


soulcurrent Explorer
soulcurrent
Posted

B12 supplements keep my RLS in check. If I forget the supplements for a couple of days I can feel it come back. Alcohol brings it back sometimes too but I hardly ever drink and couldn't say if B12 still keeps it at bay then.

Archived

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

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


  • Member Statistics

    • Total Members
      127,977
    • Most Online (within 30 mins)
      7,748
    P Jackman
    Newest Member
    P Jackman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      Permanent Floating & Undigested Stools for a Year

      By Dora77 · Posted

      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      Status Update...

      By TerryinCO · Posted

      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      Increasing symptoms after going gluten free

      By cristiana · Posted

      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
    • Jy11
      Conflicting results

      By Jy11 · Posted

      Well the conflicting results continue as the biopsy has come back negative. 😵‍💫 Waiting to discuss further but I really don’t know what to think now? Eight biopsy’s were taken from duodenum which surely should be sufficient if it was coeliac? 
×
×
  • Create New...