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

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

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

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

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

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

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

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

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

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

: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

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

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

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
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

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

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
: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

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.