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JenniferRH

Restless Leg Syndrome And Celiac Disease

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I've recently been diagnosed with Celiac disease. I suspect that I've had it for at least 10 years. During the past couple of years I've experienced increased problems with digestion, and during the past couple of years I started having problems with Restless Leg Syndrome, and the problem has gotten worse as the digestive problems increased. I'm on medication for the restless leg problem, but the medication does not keep me symptom free. My doctor doubled my dose, but it still doesn't keep me symptom free. Has anyone else had this problem. If so, did the restless leg problem improve with a gluten-free diet? I've been gluten-free for a week, and I know the other symptoms are going to take some time to get better. I'm just hoping the restless leg problem will get better, too.

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JenniferRH - I am a female in my mid 30s. I was diagnosed through bloodwork about a year ago. Prior to that, I had really bad RLS. When I went gluten-free, my RLS cleared up. There were so many other symptoms clearing up, I hardly noticed it, but one day I just realized that I didn't have it any more. I think my legs have twitched or jerked maybe two times in the past year - before that, it was several nights per week.

I was starting to get a lot of other neuro type symptoms - they crept in over several years so I really didn't notice how much I was bumping my feet into doorways, stubbing my toes, seeming clumsy. Especially in middle of the night, when I would practically ping-pong down the hall if I had to walk. That is all much better now, too.

And I used to get very sore muscles in my back, shoulder blades, neck and even head. That all cleared up, too.

Plus about 20 other odd little things. Getting rid of them all at the same time was sure a trip. It feels good to feel good.

I hope you have really good luck with your RLS on the diet. If not, you might consider other intolerances. It's not that unusual among people who have Celiac.

I initially went dairy, soy and grain free (not just gluten free - long story). I added quite a bit of that back once I figured out what I could eat.

April

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I've recently been diagnosed with Celiac disease. I suspect that I've had it for at least 10 years. During the past couple of years I've experienced increased problems with digestion, and during the past couple of years I started having problems with Restless Leg Syndrome, and the problem has gotten worse as the digestive problems increased. I'm on medication for the restless leg problem, but the medication does not keep me symptom free. My doctor doubled my dose, but it still doesn't keep me symptom free. Has anyone else had this problem. If so, did the restless leg problem improve with a gluten-free diet? I've been gluten-free for a week, and I know the other symptoms are going to take some time to get better. I'm just hoping the restless leg problem will get better, too.

For my celiac husband, the restless leg developed after going gluten free and has progressively gotten worse. Takes Requipp every night. It's been 2.5 years since started Requipp and over 4 years now for gluten free diet. The Requipp dose has been doubled and here and there he still has some shaking.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Regardless of what the 'experts' theories are, Restless Leg Syndrome is connected with the digestion. I proved this to myself many times when I have been unable to sleep because of it, until I have managed to 'expel' the offending (and offensive!) irritation thereby being able to go back to bed and sleep like a baby!

It is something I too have suffered with for years. Going gluten-free/DF definitely has made a big difference, but going 'Specific Carbohydrate' has helped even more and it is getting better all the time. It is such a relief to not be thrashing around in bed all night, and to wake up in the same place I went to sleep! My husband and I have had to resort to separate beds - between his snoring and my thrashing we were keeping each other up all night! My thrashing is improving - if I can get him to go fully SC, maybe his snoring would too!

Our problems go further than just Gluten - it is to do with Carbs in general. Most are carb intolerant whether they know it or not, and whether they have any digestive problems or not. The huge over-consumption of both carbs and sugar is triggering an epidemic of vast amounts of different 'Western' diseases, diseases that are unheard of in low, or no-carb consuming communities.

The SC Diet really helps the gut to properly heal. There may be a few out there who cope ok just on gluten-free but from the posts I keep seeing from those who are saying that they either improved for a while and are going backwards, or those who have not improved at all on just gluten-free, it just further re-inforces in my mind that it is Carbohydrates that are the problem and not just Gluten alone.

As far back as the end of the 1800's some Doctors realised that Celiacs (and those with other bowel disorders) had a problem with Carbohydrates, but, as is the pattern with these things, that was ignored and they chose to run with the 'Gluten' pack - in the 21st century we are no further forwards.

If Gluten was really the problem, once that had been eliminated from the diet, in theory those with Celiac disease would all get better. End of Story. In practice of course, that doesn't happen. That fact alone should be enough for the Medical Profession to just stop and say, "hang on a minute here, perhaps this isn't the actual solution. Maybe there is more to this than just Gluten"! In practice that doesn't happen, hence nothing has changed and those with bowel disease are still getting sick.

On a slightly cynical note - there is a lot of commerce riding on all this. If Doctors were to start recommending a carb-free diet, every Carbohydrate food producer would be up in arms. There is lucrative business and profit to be made in Gluten-Free. In Carbohydrate-Free there is none!


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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yes, going gluten-free and walking at least 2-5 miles per day helped me a lot. I hope taking this course will help you! I hated restless leg. Oddly enough, having my dog lie on my legs at night (especially at night) really helped calm me down. I think the pressure blocked some of the impulses. Hope this helps!

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long after I went gluten free and moderated my carbs significantly to keep from having troubles with hypoglycemia, I developed restless leg issues. mine is likely related to fibromyalgia, and a low dose of mirapex keeps it in check for me. but - as you can see, everyone's experience is different.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Has anyone had the experience of restless leg being made worse by antidepressants?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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RLS, anti-depressants and Iron ---

Has anyone had the experience of restless leg being made worse by antidepressants?

RE: Antidepessants -- Funny you ask this, this conversation just came up with a doctor -- Some people do have problems with RLS and certain antidepressants and often will get better with time, a few weeks or so. If not, maybe your doctor could offer some suggestions.

RE: Iron -- Also RLS can be connected to iron levels - and many celiacs are iron deficient, have low iron stores or have frank anemia. Something else to look into.

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If you have not had it tested already, please have your iron levels tested. I suffered from horrible restless legs in the car, at night, and sitting for any length of time. I went gluten free a year ago after blood testing and can't remember the last time I had restless legs. My iron levels were always low so I had to take Feosol 2-3 times a day. Now my iron levels are completely normal and since I am absorbing food so much better, I only take it once a day.

Anemia has alot to do with restless legs so please have your Ferritin levels checked.

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that is a good point - they ran a number of blood tests on me before concluding it was RLS, including iron and b12.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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RE: Iron -- Also RLS can be connected to iron levels - and many celiacs are iron deficient, have low iron stores or have frank anemia. Something else to look into.

I found this to be the case with me--I had persistant anemia for years despite iron suppliments. The anemia and the RLS cleared completely a few months into the gluten-free diet.

There was a doctor who used to post on this board who cited an article that linked RLS and anemia. I'll try to find it.

Here it is--

http://www.ncbi.nlm.nih.gov/pubmed/1693037...pt=AbstractPlus

Also, here is a link to a 6 page thread on the subject--

http://www.glutenfreeforum.com/index.php?showtopic=17026


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Thanks for all the responses. I was concerned about a possible problem with low iron. The doctor increased the dose of Requip when I called, but I really wanted a blood test. I made an appointment and went in insisting that I get checked for anemia, sugar, etc. The test came back that my iron was very low. I have been on iron now for four days. I'm still having some problems with my legs, but I'm thinking it's going to take a little while to get better. I'm also extremely tired. I suspect that I've been anemic for a long time in addition to being undiagnosed with Celiac disease for a long time. I'm optimistic that I will get better and feel much better as time goes by.

Thanks again for the posts.

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Hi All,

I just wanted to add this past year my calcium and vitamin D were very low and I had restless leg syndrome. I could not rest at night, my legs twitched and jumped. After getting those levels back up it has pretty much gone away. So you might want to make sure your Vitamin D and calcium are normal. Good luck.

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Thanks for all the responses. I was concerned about a possible problem with low iron. The doctor increased the dose of Requip when I called, but I really wanted a blood test. I made an appointment and went in insisting that I get checked for anemia, sugar, etc. The test came back that my iron was very low. I have been on iron now for four days. I'm still having some problems with my legs, but I'm thinking it's going to take a little while to get better. I'm also extremely tired. I suspect that I've been anemic for a long time in addition to being undiagnosed with Celiac disease for a long time. I'm optimistic that I will get better and feel much better as time goes by.

Thanks again for the posts.

Hi Jennifer,

Some folks need to go on IV iron, so if your iron levels don't improve, you should ask for that too.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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