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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sleep and Celiac Disease
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18 posts in this topic

I wanted to add to the topic of sleep and celiac disease.

I was diagnosed with celiac disease in 1982 after being extremely thin for 38 years. To be diagnosed I ended up in the hospital for 40 days and finally they did exploratory surgery, found the intestine was covered in ulcers, and put me on a gluten free diet.

As for the problem with the legs and sleepiness, I have both. I tested for sleep apnea because I would find myself holding my breath and would have to tell myself to breathe. The doctor said that I did not have apnea because I stopped breathing 6 times an hour and not the 10 required. He has prescribed ritilin for the daytime sleepiness. It has helped but when it stops working I have to go off the ritilin for 2 weeks and can then go back on the ritilin. He told me that he never diagnoses narcolepsy which is what I think that I have. Maybe because of the problems encountered with the diagnosis.

I sleep at least 8 hours a night because I have fibromyalgia and restless leg. I have been taking amitriptyline for over 20 years and that helps the fibromyalgia. Then I was diagnosed with the restless leg. I take clonopin at night for rls. I tried to cut the amount of amitriptyline in half but found I was waking up at night so I had to go back to the full dose again.

If I sleep during the day my legs, arms or trunk of my body have twitched (?) at one time or another.

I have many other medical problems also. Does someone know of a study being done on all of the health issues of celiacs? I would love to find out more about why I have all of the health issues that I have.

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Hi! I see this was your first post. Welcome! :)

I don't know of any studies currently going on for Celiac disease, but that does not mean that there aren't any. You may want to Google the idea and see what comes up. Also, you may be able to ask your gastro. if s/he knows of anything.

I understand your frustration with wanting to know if all of your health problems are inter-related. Wanting answers and to be healthy is very reasonable. I'm in a similar place with my health too.

Good luck to you! -Julie B)

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Have you had your iron levels tested? RLS is commonly associated with iron deficiency - which also affects a lot of people with celiac disease. Be sure to have this checked if you haven't done so already.

Another suggestion I have is to consider magnesium supplementation. Magnesium prevents muscle spasms and it also helpful/necessary to get adequate sleep. It has a fabulous calming effect. If you need help sleeping at night - you might try soaking a hot bath with epsom salts before you get into bed. The epsom salts will increase your magnesium levels and the hot bath will help to prepare your body for sleep.

Here is a good article on Restless Leg Syndrome:

http://www.Lame Advertisement/p/articles/mi_...201247#continue

Working in a health food store for years, I talked to a lot of people with problems sleeping. Magnesium was helpful for many of them. If you aren't getting 600 mg/day - you might think about trying to get that amount.*

Good luck!

- Michelle :wub:

*These statements have not been evaluated by the Food and Drug Administration :P

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I have the FMS as well. I know that there are currently some studies with that but not directly related to the celiac disease. Be sure to check your version of klonopin if it is generic. Not all are gluten-free. If the klonopin starts failing you, see if your doc will consider gabitril. It has helped a lot with the spasticity. I also take mag sulfate shots at night before bed and they help a lot with the RLS. An oral calcium magnesium supplement may help, but not if you are having a problem with malabsorption through the digestive tract.

If you are struggling to breathe at night, try sleeping on your side. Use a tennis ball sewn into the back of a shirt or a fluffy pillow to keep you from turning over once asleep. These suggestions were given to us for my spouse who has sleep apnea and tries hard not to use that blasted CPAP machine. I lay awake at night nudging him when he stops breathing. I don't have to if he uses the machine or sleeps on his side.

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To check for any studies being done go to clinicaltrials.gov. If it's being done, they'll list it. But last time I checked they weren't doing any celiac related studies.

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I wanted to add to the topic of sleep and celiac disease. 

I was diagnosed with celiac disease in 1982 after being extremely thin for 38 years.  To be diagnosed I ended up in the hospital for 40 days and finally they did exploratory surgery, found the intestine was covered in ulcers, and put me on a gluten free diet.

As for the problem with the legs and sleepiness, I have both.  I tested for sleep apnea because I would find myself holding my breath and would have to tell myself to breathe.  The doctor said that I did not have apnea because I stopped breathing 6 times an hour and not the 10 required.  He has prescribed ritilin for the daytime sleepiness.  It has helped but when it stops working I have to go off the ritilin for 2 weeks and can then go back on the ritilin.  He told me that he never diagnoses narcolepsy which is what I think that I have.  Maybe because of the problems encountered with the diagnosis.

I sleep at least 8 hours a night because I have fibromyalgia and restless leg.  I have been taking amitriptyline for over 20 years and that helps the fibromyalgia.  Then I was diagnosed with the restless leg.  I take clonopin at night for rls.  I tried to cut the amount of amitriptyline in half but found I was waking up at night so I had to go back to the full dose again. 

If I sleep during the day my legs, arms or trunk of my body have twitched (?) at one time or another. 

I have many other medical problems also.  Does someone know of a study being done on all of the health issues of celiacs?  I would love to find out more about why I have all of the health issues that I have.

<{POST_SNAPBACK}>

I was diagnosed with a "mild" case of narcolepsy in 1981. I spent the night at a sleep disorders center because I was always falling asleep at work, and my PCP had an EEG(?) done which indicated further testing was needed. I was on Ritalin for a short time after that but I did not like the way it made me feel, so I discontinued it.

Over the years I too suffered from a lot of pain that no doctor could explain. They kept telling my what it wasn't but they would never tell me what it was. My back, neck, wrists, hips, etc.... I was going to the massage therapist 3 times a week. I walked with a limp, sometimes I couldn't even turn my head. I finally found a good chiropractor that has reduced a great deal of that pain and I no longer limp. And they have had me try numerous antacids over the years for my stomach. Recently (within the past few years I was told I may have IBS). I also suffer from migraines, depression/anxiety, and restless leg syndrome. Did I mention I have asthma? :rolleyes:

I know how you feel! It all has to be related somehow.

Shortly after going gluten-free in May I was surprised when my hip and shoulder pain that had been bothering me disappeared! I'm hoping that eventually there will be a positive effect on my migraines (no more please!) and I would love to get off of the antidepressants! :)

Maureen

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Shortly after going gluten-free in May I was surprised when my hip and shoulder pain that had been bothering me disappeared!  I'm hoping that eventually there will be a positive effect on my migraines (no more please!) and I would love to get off of the antidepressants! :)

Maureen

<{POST_SNAPBACK}>

I had severe depression since the age of 13, and the gluten-free diet and treating my hypothyroidism took it away completely. So, there is hope that yours will end as well.

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I had severe depression since the age of 13, and the gluten-free diet and treating my hypothyroidism took it away completely.  So, there is hope that yours will end as well.

<{POST_SNAPBACK}>

That would be wonderful! I would love to be depression-free, although it's kind of a scary thought, I've had it for so long, I'm not sure I'd know what to do without it.! :D

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Does anyone know if celiac disease may lead to a higher incidence of foot cramps at night?

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I think I heard something about restless leg syndrome being related to Celiac. I've been having a problem staying asleep lately. I'll wake up at the slightest noise. I wonder if there's a vitamin that could help with this?

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I take Valerian before bed to stop my RLS, but I when I was exercizing and taking my calcium/magnesium supplement I did not need it as often. I have to get back to that...

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I've had a similar experience with sleep and doctors, etc. Last year I was tested for sleep apnea - the results were positive (held my breath for over a minute a couple of times), but they were more concerned because I was waking up something like 240 times in the night (not fully conscious- they were arousals, ie. coming out of deep sleep). I was so excited to finally know what was wrong with me. I'd been seeing doctors for fatigue since I was 15 and they never found anything. I moved soon after that, and had to have another sleep test so that could fit the breathing aparatus, or set the levels. The next sleep test said I didn't have sleep apnea (didn't reach the 10 episodes a night thing). The doctor decided to test me for narcolepsy, so I had another 24 hour sleep test and those came out negative too. So they sent me to a psychiatrist, who wanted to put me on a ton of medication. I said no way - went to see a nutritionist and she helped my figure out that I have celiac disease. Since being gluten-free I've slept better, and feel better during the day, but still wake up knowing that I haven't been breathing. I lost all my faith in doctors after that. Anyway, that's my story with sleep disorders. I wouldn't be surprised if there's a tie between celiac disease and narcoleptic/sleep apneaic symptoms.

Hope you're feeling better!

Mariah

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I feel it's obvious that there is absolutley a relationship between sleep distrubances and Celiacs. We know without a doubt that having celiac disease can and will affect the brain and central nervous system. Having Periferal Neuropothy, fibromyalgia, and restless leg syndrom are all connected to the central nervous system. It's all about nerve damage really. And that, in the celiacs case, comes from malnutrition. Lack of folic acid, B-vitamins, calcium, magnesium and potassium. Depression can also cause sleep disturbances and depression can be linked to malnutrition, as well as bi-polar disorder, ADHD, ADD, brain fog, confusion and even schitsophrenia, (SP).

I suffered terribly from sleeplessness, getting as little as 1 or 2 hours of sleep a night. I would toss and turn with excrutiating leg, back and bone pain. I would wake up constantly from cramps, muscle twitching, and charlie horses. When I was diagnosed a celiac and went gluten-free, my stomache problems went away immediatley, but the rest has taken a while. It took about a year or so but the Periferal neuropothy is basically gone. I only feel it again if I have been accidentally glutened, but it's much less. The RLS is pretty well gone too. No more charlie horses and twitching. The fibro is better. I take sublingual B-and folic acid vitamins, eat as much organic as possible, (pesticides can cause sweling of the tissues making you feel more painful) and excersise 3 or 4 times a week.

Hypothyroid is connected to celiacs, and depression also. I was slightly Hypo but my levels went up quite a bit when I went gluten-free.

Something noone has mentioned is to try takeing Omega 3 fallty acids. (fish oil) They help with every system in the body, joint pain, (some studies show it to actually reverse Reumatoid arthritis, and regular arthrits,) heart, cholesterol levels, and definatley help with depression. (even make your skin nicer and your hair shinier) Good Stuff.

Wendy

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I wanted to add to the topic of sleep and celiac disease. 

I was diagnosed with celiac disease in 1982 after being extremely thin for 38 years.  To be diagnosed I ended up in the hospital for 40 days and finally they did exploratory surgery, found the intestine was covered in ulcers, and put me on a gluten free diet.

As for the problem with the legs and sleepiness, I have both.  I tested for sleep apnea because I would find myself holding my breath and would have to tell myself to breathe.  The doctor said that I did not have apnea because I stopped breathing 6 times an hour and not the 10 required.  He has prescribed ritilin for the daytime sleepiness.  It has helped but when it stops working I have to go off the ritilin for 2 weeks and can then go back on the ritilin.  He told me that he never diagnoses narcolepsy which is what I think that I have.  Maybe because of the problems encountered with the diagnosis.

I sleep at least 8 hours a night because I have fibromyalgia and restless leg.  I have been taking amitriptyline for over 20 years and that helps the fibromyalgia.  Then I was diagnosed with the restless leg.  I take clonopin at night for rls.  I tried to cut the amount of amitriptyline in half but found I was waking up at night so I had to go back to the full dose again. 

If I sleep during the day my legs, arms or trunk of my body have twitched (?) at one time or another. 

I have many other medical problems also.  Does someone know of a study being done on all of the health issues of celiacs?  I would love to find out more about why I have all of the health issues that I have.

<{POST_SNAPBACK}>

what do you mean by rest less leg?

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I would like to add that the muscle and joint pains can come from reaction to the deadly nightshade family of plants which include potatoes, tomatos, peppers and eggplants. I had terrible pains in the night which awakened me at 3:00 am so so and when I eliminated these items from my diet I began to be free from those pains and able to sleep more normally. This is documented and may be researched on the web by looking up arthritis information via google or other search engines. The potato flour is often used as a substitute in many glutein free foods so you have to work reallly hard to get this out of the diet. This is a real kick in the head for me as these are some of my favorite foods and I really wasn't ready to give them up.

But I was plenty ready to give up that pain. I was so sleep deprived I was ready to go nuts. It was affecting my health.

Secondly, I was taking specially compounded hormones which were applied as a cream and consulted the pharmacist and she said to be sure to apply them above the waist as they would be much more effective and would work more correctly, not make me sleeply during the day, help me sleep at night if I applied them in the evening and above the waist.

She also advised me to have a very light snack before bedtime to make sure I was not getting hungry which would make me wake up. Bead lady

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I always was woken up in the middle of the night with leg cramps and having to go to the bathroom minimum every half hour. Now since I have been gluten-free for two weeks, I have not had leg cramps and I have maybe got up twice at the very most during the night to go to the bathroom.

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I have always slept lightly waking up once a night, but this year, my sleep has become worse and worse. this coincides with my other symptoms increasing and I've just had positive blood results for celiac disease. I'm looking forward to after the biopsy, so I can go gluten-free - really hoping to have the sleep transformation that so many others here are experiencing. Will keep you posted!

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Does anyone know if celiac disease may lead to a higher incidence of foot cramps at night?

I've only been diagnosed with celiac disease since July '05; however, my nutritionist told me that the foot cramps, "charley horses", if you will, were a result of calcium deficiency, possibly a result of the whole digestive "mess" that is Celiac Disease. She put me on 1500 mg of calcium per day, and the cramps are much less frequent. Ask your doctor or nutritionist about calcium. Couldn't hurt!!! By the way, she also told me to take B6, B Complex, magnesium, zinc, and I get monthly B12 shots. Lots of luck. Sybyl

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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