Major Sleep Disorders And Celiac

[Grrranny]

Two things which I have found incredibly helpful for sleep patterns, muscle/nerve issues (like RLS), mood, energy, and so many other things it would take a whole book to list them all, is magnesium and a sublingual methylcobalamin (vitamin B12). These two nutrients are common deficiencies among celiacs too, so it makes sense that so many on this board not only report similar issues, but similar benefits from taking these nutrients.

HTH

Hey, RiceGuy,

After doing some research, I found that Celiacs usually have a thiamin deficiency, and that that can actually kill you quite easily, if it goes on long enough. It can cause congestive heart failure, among many other things. I had Celiac for so long that, when I took thiamin for two days, my heart symptoms, which were pretty bad, simply disappeared, really. That totally surprised me, and I would bet good money that lots of things may be caused by this problem. I am taking 100mg of thiamin daily (it's water soluble) until my villi grow back. My doctor was surprised by all this, as well, and I have his blessing to take the thiamin. Look into it, yourself, it could help a lot.

Good Luck with everything,

Grrranny

[Grrranny]

Two things which I have found incredibly helpful for sleep patterns, muscle/nerve issues (like RLS), mood, energy, and so many other things it would take a whole book to list them all, is magnesium and a sublingual methylcobalamin (vitamin B12). These two nutrients are common deficiencies among celiacs too, so it makes sense that so many on this board not only report similar issues, but similar benefits from taking these nutrients.

HTH

Hey, RiceGuy, (Love the Twinkies quote at the bottom. Thanks.)

After doing some research, I found that Celiacs usually have a thiamin deficiency, and that that can actually kill you quite easily, if it goes on long enough. It can cause congestive heart failure, among many other things. I had Celiac for so long that, when I took thiamin for two days, my heart symptoms, which were pretty bad, simply disappeared, really. That totally surprised me, and I would bet good money that lots of things may be caused by this problem. I am taking 100mg of thiamin daily (it's water soluble) until my villi grow back. My doctor was surprised by all this, as well, and I have his blessing to take the thiamin. Look into it, yourself, it could help a lot.

Good Luck with everything,

Grrranny

[mftnchn]

My sleep issues were persistent for several years though they did respond to a small dose of Ambien, thankfully. I didn't have improvement in this with gluten-free. I agree with other posters that lots of various nutrient deficiencies can be a factor. I was surprised when I had alternative testing for my meds and supplements and was put on a neurotransmitter support called travcor. I immediately started sleeping much much better.

I also think SCD has helped me but I am not sure how much because I was already on the neurotransmitter support by the time I started SCD. SCD did bring much more dramatic improvement then I experienced on gluten-free.

Caty, I totally agree that SCD should have more prominence here on this site. There are so many that struggle with symptoms so long even after going gluten-free. And if the carb digestion is messed up, absorption of nutrients we need won't be there either. I celebrate with those who get well with gluten-free only, there are just a lot of us who don't.

[AliB]

Hey, RiceGuy, (Love the Twinkies quote at the bottom. Thanks.)

After doing some research, I found that Celiacs usually have a thiamin deficiency, and that that can actually kill you quite easily, if it goes on long enough. It can cause congestive heart failure, among many other things. I had Celiac for so long that, when I took thiamin for two days, my heart symptoms, which were pretty bad, simply disappeared, really. That totally surprised me, and I would bet good money that lots of things may be caused by this problem. I am taking 100mg of thiamin daily (it's water soluble) until my villi grow back. My doctor was surprised by all this, as well, and I have his blessing to take the thiamin. Look into it, yourself, it could help a lot.

Good Luck with everything,

Grrranny

That's interesting about the thiamin (B1). I looked it up and one of the things I picked up on was the 'burning feet syndrome' apparently linked with deficiency.

I had that for years. Along with the RLS it drove me mad and I would have to sleep with my feet hanging out of the bed all the time because they were so hot. They didn't particularly feel hot to the touch but kind of 'inside'. Although I did loads of research on that back then, nothing linked it to B1 or gluten or anything - it was always 'we don't know why'!

Since going gluten-free, dairy free and then SCD I have hardly had a problem since apart from an odd 'glutening' or if I have eaten something else my digestion can't cope with. It has been wonderful. I suspect that a lot of it is to do with the fact that my colon is no longer being aggravated by gluten and other foods I couldn't cope with, as it went away too fast to be down to malabsorption, but I am sure that didn't help.

[caek-is-a-lie]

Wow I wish I was still in touch with an old friend of mine. She had burning parasthesias in her feet and had cataplexy when she ate food. I found I can control my cataplexy if I eat gluten-free. She took a lot of heavy-duty meds to control it all. I bet she'd benefit immensely from a gluten-free diet and the other things you recommended. Oh well.

[ellora]

hi i need to chat to someone as doctors in the uk dont listen and havent got a clue. iv got coeliac and DH, my mums also has coeliac and just been diagnosed with MS. I never realised the neurological effects coeliac could have and i have been having problems with my thought patters and things and i was wondering if anyone knows anything. I know theres links with depression but my doctor says not. even though my mum sufffers from depression also. i was an A student at school and as i got older i started to struggle with concentration and its got worse i feel like my mind is slipping away from me. i forget things (i reask questions over again minuits after iv been given the answer and walk out of the house with my cups in hand ect.)and have always been so clumsy that all my teachers and family ect. usd to comment on it. my first word was celetape <(eg. iv just spent half an hour trying to remember how to spell it and cant). im wondering if i have a coordination problem as people also comment on the way i walk. some even say i have a slight limp or dragging of the leg. iv gotton so bad somedays i cant talk and i stop in the middle of things and dont know what im doing. iv heard of legions on the brain with coeliac but i dont know if its related. i have insomnia and really bad dreams when i do sleep. iv always been good at hard work but i was in my last job for seven weeks before i broke down as it was too much. just a shop job but on my last day before i decided to leave i made so many mistakes and i was shaking and felt like my head was exsploding. i dont feel my olds self. i know theres something wrong. i think to everyone else this sounds stupid but to me its scary and i think a doctor will think im mad. thing is though i started a degree four years ago getting top marks and took a years out when i went down hill thinking id get better with rest and didnt and in the end i ended up barely passing. im sorry for the essay i just need help.

[codyb87]

Wow to the above poster, that really sucks! Just when I think I'VE got issues, someone else's problems always trump it.

Still waiting to get tested and diagnosed with celiac, but my sleep is horrible on the nights that Im pretty sure Ive had gluten.

I never get nightmares or anything, I just can never sleep becuase it seems my heart pounds a little heavier than usual and kinda wants me to stay awake. weird feeling indeed.

And to relate to the above poster, I too am working hard at school and it's screwing things up!

[chatycady]

I used to have a horrible time falling to sleep and staying asleep. Also, leg twitches and at time horrible leg cramps that had me jumping out of bed to walk them off. NO MORE!

It takes time. I was very low (almost none) on vitamin D, plus all the other vitamins and minerals celiacs are deficient of. I also found the scdiet which finally solved the problem. Now I sleep like a baby. All night long. What a blessing! There is hope. You will get better.

[Live2BWell]

I went to a sleep therapy specialist MD who is very well known in the area here and very good. I went back in January. Just found out that I have Celiac as of a week ago. I think this may change the whole treatment plan. With my intestines being as damaged as they are, I am not properly absorbing medicine, along with the vitamin deficiencies. As they heal, I have a feeling my sleep problems may correct themselves. Which would be a miracle, because I have had these sleep disorders since I was 14. Also, I have had anorexia since I was 14. I bet there is some relation there too. I have tried every sleeping pill and restless leg syndrome pill that I know of, and they all help for maybe a night and then there is no more affect.

I feel like they are ready to give up on me since we did the whole 24 hour sleep/nap study in January and weren't getting anywhere. I haven't talked to the doctor there yet about Celiac, but I will on Monday. I have been doing other things related to health, like telling my other doctors, nutritionist, therapist... I never knew why I wasn't absorbing medications and had to be on superhigh doses to even get a small affect. I'm sure that Celiac is why. As I heal, possibly I might be able to change some of the dosages of my drugs.

Right now though I am reading this section and seeing that a lot of Celiacs have problems with sleep. I didn't know I was Celiac, so could not have known there was a connection. It makes sense though.

Anyone have really SEVERE sleep problems who has noticed a huge change in their ability to sleep? I would love to hear some view points. Thanks!

I too have very severe sleep problems and have since childhood. I struggled with Anorexia and Bulimia for 12 years (I have been recovered for 3 years) My sleep problems have continued to various degrees over the years. Today, I still have to take sleep medication most nights to sleep. I have major restless leg syndrome, TMJ, and a slew of other sleep disturbances. As an infant I had sleep apnea (I was premature) but I grew out of it.

The sleep medication I have been on is the only one that has worked and not stopped working. It enables me to sleep, and sometimes even wake up feeling rested (although most of the time I do not, so that gets frustrating.) Without the sleep medication, I do not sleep well at all (I can fall asleep, but I am a violent sleeper and very restless. Sometimes I have severe insomnia) I was DX with celiac late last year. I have been considering requesting a sleep study, but have not yet.

I do not know what the coorelation is (if any) but I have come across other people who have (or had) eating disorders that have been diagnosed with autoimmune conditions including Celiac. Coincidence or link, I do not know.

Best of luck!

[Gerri]

I have severe obstructed sleep apnea, and a few Central Apnea thrown in for good measure.

I have since been diagnosed with Celiac, and have followed the diet strictly. Before being diagnosed with Celiac, I was diagnosed with low vitamin B12, and I am Vitamin D Deficient.

Since following the gluten free diet, my Diabetes has become controlled. Doctors were to the point they were thinking of putting me on insulin. My sleep doctor confirmed that my severe sleep apnea, is also improving and put down the pressure from 15 to 11.

Even my GERDs is improving. I don't know if it will ever be cured, but the little provement is good. I am hoping my severe drug allergies, and next to no tollerance of different medications will improve, but I can only hope. Also being investigated for Rheumatoid Arthritis, and Lupus.

Celiac diet has helped, but liver enzymes still rising, and neurological problems are also getting worse.

Hugs

Gerri

[mimommy]

I read that celiac and gluten sensitivity can cause anti-bodies to attack the cerabelum (base of the brain) wihich can cause all the neuro symptoms and it can take time for them to recover and some times there is permanent damage.

Do you remember where you read this info? Could you please post a link or refer me to outside material? I need to know more--THNKS!

[njdevsfan09]

My sleep pattern is awful. I cannot fall asleep before 1130pm everynight no matter how tired I am. For example, I went out Wednesday and didnt come home until 230am. I woke up at 7 to go to work the next morning and that night I was exhausted but could not fall asleep. I think it was 12:30am the last time I looked at the clock. I often lay there feeling very uncomfortable. Especially my legs. They cannot stop moving and it often frustrates me and I freak out over it.

[mushroom]

This used to be common for me, and still is when I get accidentally glutened:

Pounding, rapid heartbeat; very wired, like my head is plugged into an electrical outlet; inability to relax despite conscious efforts--slow rhythmic breathing, etc.; restlessness; and of course inability to sleep. For years I have taken diazepam at bedtime as a sleep aid (to relax me enough to get to sleep). If and when I did sleep I had horrible, restless nightmares which would usually wake me up.

Since gluten free these have gradually gone away (not immediate) and return upon exposure to gluten. It sure is nice to have interesting dreams for a change.

To the initial poster, I do hope your sleep patterns improve soon. Sleep is such a blessing.

[Nadia2009]

I have mild sleep apnea at least it was mild the last time I had a sleep study and I am a potential celiac and gluten intolerant. I don't have many simptoms around the stomach. But I am have a foggy mind, I am always tired in the morning (forgot this could be from sleep apnea!) and I don't have a lot of coordination...my hands and fingers can feel very weak (more to do with panic attacks?). I too was an A student but now I sometimes have to think of the word before writing it! I am not too bad for balance and I always had an excellent balance. Carbs and gluten must attack my head and my respiratory system first. I have sinus inflammation, stuffy nose, sneezing and asthma symptoms.

Wow...I should save this message for me and read it over and over in case my blood results are negative. I don't need any test if I already know that gluten or some other thing in the wheat at least is clogging my respiratory organs. Headaches, foggy mind, weakness, lack of cordination, persistent caugh and asthma, forgetfulness, ADD and sleep apnea should be enough to give wheat or all gluten.

[GFinDC]

Not being able to sleep is one of the symptoms I have with both gluten and casein. I used to have trouble sleeping all the time before going gluten-free, which slowly resolved and I was able to sleep like a "normal" person for the first time in years. Recently I started having trouble sleeping again after a couple of accidental glutenings and what I think was a sustained month long minimal gluteneing from an unexpected source. I was eating nuts and seeds from the bulk food section at a health food store and think they were slightly cc'd. I figure maybe the people loading the bins used the same scoop for all the products they load in the bins when stocking. Whole wheat flour, pumpkin seeds, sunflower seeds cranberries etc. Anyhow, I got about 30 minutes sleep from Sunday morning to Monday morning, 3.5 hours from Monday morning thru Tuesday, and am now wide awake at 1:15 in morning Tuesday still. Went to bed once already and couldn't sleep so decided to try web surfing awhile. Then again I went to get my taxes done tonight after work and who can sleep after that? Wierd thing is I don't feel tired and that just seems wrong somehow. These sleep problems have been on-going like this for a month now. Today I decided not to do any 12 hour non-drowsy Sudafed in the morning and no sleeping pills tonight. I have been taking a Sudafed 12 hours in the am and a sleeping pill at night with a melatonin for last 3 days. I decided those weren't really working out so not doing them today. Hmmm, my ears are ringing more than usual too, which happens when I get the big G. I have a thyroid nodule or two and am wondering if they have decided to go into overdrive for a while. As it turns out I have an appointment with my endo this week so maybe that will reveal something. Tonight I decided to try the bottle of potato vodka that has been sitting around unopened since Lent started. It hasn't helped yet. Still not sleepy! I figure if my thyroid hasn't gone ker-wacky then maybe my brain has gone flooey somehow, maybe a pituitary (controls thyroid) problem. Well, at least I get to hear the nightengales singing, which is really quite a treat! I love that part of it! Even my cat likes to go out and listen to them sing.

[beanpot]

Yes I've always had terrible sleep - nightmares as a child, as an adult I've had RLS, night hot flashes, waking up with racing heart and anxious mind.

In my short few weeks going gluten-free better sleep is the major triumph. I can hardly believe it is real. Noises don't wake me up as easily, I sleep deeper, go back to sleep easier when awakened. And with the addition of a magnesium supplement my RLS has gotten 95% better. I had tried every RLS drug - they all made me nauseous and kept me awake worse than the RLS.

Hugs and best wishes to everyone struggling with sleep, I know how awful it is!

[GFinDC]

Durn vodka didn't help! Couple shots of that stuff made me feel a little silly but didn't make me sleepy. I got a another 3 hours sleep that night. Doing better as of last night night though, got close to 7 hours in a couple rounds of sleep, not straight through. I figured out my problem was some milk chocolate I ate Sunday night. A little too much casein for my system I guess. That's one of the things it (casein) does to me, keeps me from sleeping. I did a little reading on casein and sleep. Seems there is a chemical called tyrosine in it that stimulates the brain-works. Seems milk also contains tryptophan which leads to sleepiness.

This site has some tips on getting to sleep. If you are like me though don't take the tip about warm milk to heart.

Open Original Shared Link

Wiki link about tyrosine

Open Original Shared Link