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Restless Legs Syndrom (rls)


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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?

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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?

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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.

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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.

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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.

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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!

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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?

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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!

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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!

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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.

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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...

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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.

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  • 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.....

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  • 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.

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    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
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