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Restless Legs Syndrom (rls)

Smitten

By Smitten
in Related Issues & Disorders

Recommended Posts

Renae Newbie
Renae
Posted
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?

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  • Replies 88
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BARLEY MISSING Newbie
BARLEY MISSING
Posted

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
Karen B.
Posted
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
debmidge
Posted

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
janjal
Posted

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
natalie
Posted
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
itsmerob
Posted

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?

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ACK514 Rookie
ACK514
Posted
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
Ooni
Posted
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
Ooni
Posted

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
ariesmama
Posted
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
The Lovebug
Posted

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
320 days
Posted
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
dopaminegirl
Posted

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.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
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      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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