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 Leg Syndrome

mustluvcats

Recommended Posts

mustluvcats Rookie
mustluvcats
Posted

Hi Everyone:

I'm new here. I have been gluten free for 2 weeks tomorrow. I havn't been formally diagnosed with Celiac diease yet, but I already seem to be at least gluten sensitive. I was having trouble with restless leg syndrome along with a lot of other things, prior to my gluten free diet. My restless leg syndrome disapeared within two days of going on the diet. Has anyone else had this problem? I am amazed at how different I feel in just a short time. I'm also amazed at all the different items wheat is present in. Things you wouldn't even suspect, if you didn't read the label.

I was feeling like I was given a death sentence, trying to get a way from gluten, wheat. It makes going out to dinner such a chore. Thank heavens there a few Restaurants that have GIG menus.

Does anyone have any suggestions for good bread? The one I tried sucked big time.

Regards,

Jayne

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

Celiac.com Sponsor (A8-M):


elonwy Enthusiast
elonwy
Posted

I totally would get restless leg, and still get it when accidently glutened. Do not miss that at all.

On the bread... might I suggest not jumping head first into the substitutes? Give yourself a chance to forget what the "real" thing tastes like. I waited a while, because I couldn't find things, I find the farther I get from the memory of something, the more I like the subsitute. May sound wierd, but it works. I like Kinnikinnick myself, though its harder to find. The whole foods bakery is good too. I do not like any of the other pre-made loaf breads, and I cannot eat any of them without toasting them.

My best experience has been with baking bread using Bette Hagman's recipes and flour blends, though I usually don't go through that effort just because I have a tiny kitchen and baking is a big pain.

When I first went gluten-free, I was feeling really bad. I splurged on gluten free mac and cheese and pasta and things, and then had to slow down cause I was eating so much rice I blocked myself up. Once I balanced out and gave myself the breads and things as treats, it got much better. (for me and my pocket book)

Hopefully my ramblings are helpful.

jerseyangel Proficient
jerseyangel
Posted

Restless leg has also been linked to anemia--which is common with Celiac. I had restless legs for years, and it stopped after I went gluten-free--I was also severly anemic.

2plustwins Rookie
2plustwins
Posted

It is funny that you mention RLS. I have not had any symptoms since going gluten-free a few weeks ago. YEA! Just another thing I can add to the positives of being Gluten Free!

Cherry Tart Apprentice
Cherry Tart
Posted

I just realized after reading this post that I used to have RLS before going gluten-free. I never put 2 and 2 together. I always just assumed that I was an "active sleeper" :lol: Since going gluten-free, the RLS has disappeard, thank goodness!

  • 3 months later...
Ruth76 Newbie
Ruth76
Posted

Soooo glad that you wrote that Jayne!

Anemia is a point, but I don't think it's just Anemia. There must be something different which plays a role!

I have been gluten-free for 2 years now and last week my doctor put me on a gluten-containing diet for 6 days and 10 hours and 29 minutes to do a test.

I had it all back at once: RLS, depressions, problems with my concentration during work, skin-problems etc :(.

There's lots of work to do concerning research!!!

You asked for a good bread:

the rice-bread from Trader Joes. I like it, because it's very sweet.

Try perhaps whole foods gluten-free breads, if there is one in your area.

I have always the problem that everything has sugar in it, since I'm also Fructose-intolerant...so I can't recommend anything edible for non-FIs, sorry!

wowzer Community Regular
wowzer
Posted

I used to get that reaction before going gluten free. I don't miss it either.

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

Celiac.com Sponsor (A8-M):


  • 6 months later...
katebuggie28 Apprentice
katebuggie28
Posted

I have had RLS all of my life (as far as I can remember) I had it pretty bad. I had no idea that celiac disease caused it until today. I have been gluten-free for 6 days ( a few mishaps unknowingly) Loking back on the past few days my RLS has been nonexistant. I am self dx, and I haven't been eating much at all, so I don't know if i am anemiac or not. gluten-free has apparently helped with my RLS! That makes me happy. :P

  • 2 weeks later...
NYJanice Newbie
NYJanice
Posted

I thought I was the only one who found that RLS disappeared on a gluten free diet. That alone makes it worth being vigilent.

suzie/mamaw Newbie
suzie/mamaw
Posted

:huh: I became gluten free a couple of years ago, and I still have rls... Nobody can come up with an answer.. I take my vitamins, stay away from all gluten... but I wake up with it every morning and go to bed with it at night...

. Oh woah is me ..

  • 4 months later...
one more mile Contributor
one more mile
Posted

I had RLS also. I do get it from time but only when I am up way to late.

My doctor was telling me that it was from diabetes nerve damage, while I tested in and out of diabetes.

Never a big bread eater I like to use rice cakes to make sandwiches.

one more mile

henny Explorer
henny
Posted

wow....I am on my second week gluten-free and am just realizing I haven't had RLS since I started....

this is unreal! (In a good way!)

knitaddict Apprentice
knitaddict
Posted

I never realized that RLS and anemia were linked. THAT explains a LOT...the anemia was one of the first things that popped up for me. Ugh---I've had RLS for YEARS...then again...I've been anemic for year too! Ugh. :rolleyes:

chuckybaby Rookie
chuckybaby
Posted
I never realized that RLS and anemia were linked. THAT explains a LOT...the anemia was one of the first things that popped up for me. Ugh---I've had RLS for YEARS...then again...I've been anemic for year too! Ugh. :rolleyes:

I was diagnosed with severe anemia a month ago. It was so bad I was immediately sent to the ER and admitted. They had to give me 4 units of blood. I had restless leg before the transfusion but have not had it since. They gave me the Celiac panel and it came out negative...The CT scan shows a very large hiatal hernia...undergoing capsule and upper endoscopy to try and confirm if I have Celiac's or not.

Live2BWell Enthusiast
Live2BWell
Posted

I have RLS also; I have noticed that being gluten free helps tremendously with RLS; I have also found that when my Hashimotos flares up (autoimmune thyroid disorder) then my RLS gets much worse. Interesting topic!

  • 1 month later...
aliciatakescare Newbie
aliciatakescare
Posted

good evening all:

i had rls as well until going gluten free. also, i have been chronically anemic (since birth actually) and just take ferrus fumerate (gluten-free of course) 3 times a day with no more rls and my anemia is well-conrolled. I agree on the bread: Kinni Kwick is my favorite.

Hi Everyone:

I'm new here. I have been gluten free for 2 weeks tomorrow. I havn't been formally diagnosed with Celiac diease yet, but I already seem to be at least gluten sensitive. I was having trouble with restless leg syndrome along with a lot of other things, prior to my gluten free diet. My restless leg syndrome disapeared within two days of going on the diet. Has anyone else had this problem? I am amazed at how different I feel in just a short time. I'm also amazed at all the different items wheat is present in. Things you wouldn't even suspect, if you didn't read the label.

I was feeling like I was given a death sentence, trying to get a way from gluten, wheat. It makes going out to dinner such a chore. Thank heavens there a few Restaurants that have GIG menus.

Does anyone have any suggestions for good bread? The one I tried sucked big time.

Regards,

Jayne

  • 2 months later...
socwkr Newbie
socwkr
Posted
:huh: I became gluten free a couple of years ago, and I still have rls... Nobody can come up with an answer.. I take my vitamins, stay away from all gluten... but I wake up with it every morning and go to bed with it at night...

. Oh woah is me ..

I also have had RLS and have Celiac. What I found is that since I take digestive enzymes, my RLS has disappeared. I take them because I had my gallbladder removed because of gallstones and the next day I developed Celiac! Can you believe it. Must have had the gene and the surgery triggered the onset of the disease. This is what the GI doctor said. So it's harder for me to break down my food.

I remember watching a medical show where these doctors discussed RLS and talked about how, while blood plasma levels of iron may be normal, the iron levels in the brain are low. I believe this is because iron may not be digested and available to cross the blood-brain barrier. This is my opinion, of course. So, try digestive enzymes, available at any healthfood store. They are natural and I've not read any side effects. They help me tremendously!.

mamabear Explorer
mamabear
Posted

I have a kind of restless leg syndrome, but it is not classic. I don't just need to move my legs; they have muscle groups that twitch and contract. Occurs at rest or during the day. It may also lead to a full blown charley horse type of cramp. Usually happens in my calves but can be anywhere on my body. Since it's been going on for 7 1/2 years , I no longer fear ALS or similar diseases. I am getting the EMG/NCV this week so I may learn more . I had low iron and ferritin years ago, but it's been well corrected after the gluten-free diet and has had no improvement on my legs. Exercise seems to make it less likely.

Anybody else?

jerseyangel Proficient
jerseyangel
Posted

Hi mamabear :D

Yes, I continue to have muscle cramps in my feet and calves at night while in bed--never during the day. Stretching my legs often will cause it, and sometimes if my feet aren't in the "right" position in bed, I get a cramp in my arch.

No restlessness anymore, though.....and my iron continues to be excellent :)

mamabear Explorer
mamabear
Posted
Hi mamabear :D

Yes, I continue to have muscle cramps in my feet and calves at night while in bed--never during the day. Stretching my legs often will cause it, and sometimes if my feet aren't in the "right" position in bed, I get a cramp in my arch.

No restlessness anymore, though.....and my iron continues to be excellent :)

Hey Jersey Angel!

I have been curious about how much neuropathy is present, so I guess I'll find out soon. Plain muscle cramps shouldn't be neuropathic, so this is a scientific experiment!!! Medieval torture, I hear.......but I'm game. :D

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. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.