Major Sleep Disorders And Celiac

[citykatmm]

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!

[kenlove]

You'll be amazed at how much better you feel going totally gluten free. I had many sleep problems too, especially the sweats and leg problems only they first treated me for parkinsons instead of RLS.

Good luck!

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!

[susieg-1]

You'll be amazed at how much better you feel going totally gluten free. I had many sleep problems too, especially the sweats and leg problems only they first treated me for parkinsons instead of RLS.

Good luck!

I have found that gluten-free diet is not enough to lessen my sleep problems and have found no sugar diet to help a great deal but then I was just diagnosed with Lyme also and the continued sleep problems after going gluten-free may be related to Lyme.

hth

[kenlove]

Could be dairy too but I think gluten-free is a good place to start. For me it was a major change.

I'll still get night sweats if I have cheese or ice cream after 4pm or so.

ken

I have found that gluten-free diet is not enough to lessen my sleep problems and have found no sugar diet to help a great deal but then I was just diagnosed with Lyme also and the continued sleep problems after going gluten-free may be related to Lyme.

hth

[curlyfries]

I had many sleep problems too, especially the sweats and leg problems only they first treated me for parkinsons instead of RLS.

My daughter has RLS and the medicine they put her on...(the name escapes me at the moment)....was originally intended for Parkinson's. It has since then also been approved for the treatment of RLS.

[citykatmm]

There are two main ones, Requip and Mirapex. I tried them both and at the time had not been diagnosed with celiac. I have always had problems absorbing medicine, I just didn't know why. Now that I have found out why, I might give them a try again to see if they are effective after my body heals. Thanks for the reply.

[RiceGuy]

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

[Caletara]

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

I am also a very light sleeper, anything will wake me up. But I also found that gluten free doesn't quite get rid of my sleeping problems. I think sugar aggravates everything-i get muscle twitches and shakiness and some nerve tingling when I eat it too late at night, when I sleep. It's profoundly annoying. I'm still trying to figure out what's making me clench/grind my teeth. My doctor wants me to do a neuro-adrenal test, to find out if any of my hormones are low and causing my sleeping problems. A word of wisdom with sugar--even fruit teas seem to do it for me. I use the natural loose teas, so theirs no actually sugar in it, but the fructose from the fruit itself gives me sleeping problems. Good luck!

[MELINE]

nigthmares definately went away and they come back when I am glutened. One of the first symptoms.

hope you feel better soon.

[Jim K. Hale]

nigthmares definately went away and they come back when I am glutened. One of the first symptoms.

hope you feel better soon.

For me, sleep disorders were some of the first issues I started to have. Then again, most of my symptoms were neurologic rather than g/i. I have excessive daytime sleepiness and a REM sleep disorder, and the treatment that has worked best for me involves higher doses of stimulant medications during the day. If I take them, I tend to sleep a little better at night. If I don't, I don't sleep - and I'm exhausted during the day. I have theories medically as to why, but ... given that I also had short-term memory and concentration issues, this worked well for me.

If a sleep doc isn't amenable to working with you, find another. Being sleepy all the time is lousy.

[Adelle]

I have ALWAYS had sleep issues. I always either slept too much, or too little (it comes and goes in cycles). And I've had sleep paralysis my entire life (first episode I remember at 6 years old). I finally had a sleep study done in 2006 (just months before I went gluten-free). They said my sleep cycles were... "weird". Frankly I was too tired to pay much attention, but I had only a few min of "stage 2" sleep, 0 REM, and a SUPER LONG (like triple the accepted norm) stage 3. They said there was nothing they could do buy make me use a CPAP. I still have no idea why and I chucked it after 3 months of no sleep. I was literally going insane from lack of sleep when I was trying to use that thing. DH was trying to find a mental hospital to check me into because of my crazy behavior when the power went out 1 night and I got a FULL NIGHT'S SLEEP without it. After that it was GONE! I had symptoms of narcolepsy, but my insurance wouldn't cover a daytime study, so my doc just gave me provigil which made me even crazier, but still didn't help me feel awake. So I chucked that too. After I went gluten-free (almost 2 years ago), I've been feeling MUCH better. I still wake up naturally for about 15-20 min every 2 hours (which makes me the perfect infant overnight babysitter my friends have discovered! ), but I only need about 8 hours to feel pretty rested with the occasional nap in the winter (when I tend to have a lot of joint issues and resting really helps). My vit levels have been tested a million times and I'm back to normal range now (have been for about 1 year).

The sleep paralysis remains though. In fact, before we got our dog Ninja, I had rare episodes lasting for hours (I could see the clock, THAT SUCKED), and I had shorter episodes EVERY NIGHT. Amazingly enough, once we got Ninja, he started waking me up at night (which I found irritating at the time) until one day I could feel myself sinking into it when out of nowhere he tackled me, barking and jumping on my chest (he's a 45 lb dog, ugh!). When we went on vacation (and couldn't take him) the episodes came back and suddenly I realized I hadn't had one in MONTHS!!! He still pushes me awake once or twice a night, but I haven't had any problems since!

I also didn't have many digestive issues, but I had TONS of neuro stuff happening. Not one of the 12 doctors I saw during that time saw anything, but it took 10 min of me "googling" my symptoms to find you guys! Thank goodness!!

Sorry if that was rambling and pointless!

[tarnalberry]

I have RLS (I take plenty of mag and b-12, not to mention a number of other supplements), and it developed a number of years after going gluten free, as part of my development of fibromyalgia. I am on Mirapex (it is a drug that was originally designed for Parkinson's that has dual use for RLS), and that's what helps me the most, by far. Nothing else really touches the issue. So, for me, the diet does not appear to be connected (and yes, I've looked into other sensitivities and I'm also off dairy), but people here have found that going gluten free does help some of these things for them.

[mtTazzie]

I was just flat out exhausted all the time and was diagnosed with mild sleep apnea, I started using a cpap only to discover that most of the time my sinuses were so stuffed I couldn't breath even with the cpap, I tried rinsing I tried decongestants...on and on, finally I was reading a book with information on inflammation that talked about the symptoms that gluten intolerance could cause hmmmmm so for the past couple of weeks I have been doing my best to eliminate at least all wheat products (as I am reading this site I now realize I might have to go further) but...my sinuses are improving, my tummy feels better...much less gas and I realized after a week that I was starting to sleep better, a few times even through the night (without cpap so far) I am hoping as I get better at this my sinuses will heal and I can use the cpap again, I really feel much better when I can sleep through the night with it on....

hope this helps

Tazzie

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!

[darlindeb25]

After 8 yrs of gluten free, I have been diagnosed with sleep apnea. To be honest, I never thought about sleep apnea. It didn't occur to me that my restless nights, headaches, extreme tireness during the day, etc could be caused by sleep apnea, I kept thinking it was a vitamin problem.

I had a neurologist for a year, who was telling me my headaches were being caused by pain in my neck, he said I was not getting the proper sleep because my neck was preventing it, and he put me on Topamax, starting at 50 mg, building up to 125 mgs. At times, I did seem to sleep better, or was just very sleepy. My headaches did not change much, then they became worse again. HE NEVER ONCE SUGGESTED SLEEP APNEA.

I finally did get an appt with the neurologist that I intially wanted, and as he was asking me these questions, I kept thinking, what does this have to do with neuropathy. He asked about my headaches, when do I not have one, which I told him, I ALWAYS have a headache, sometimes worse than others, but ALWAYS. He asked about my memory, to which I said, "My what?" He laughed and said, "Yup, just what I thought!" Then I told him memory wise, there are so many times my thoughts can not connect, I can't spell simple words, I can't write a word correctly while someone spells it to me, etc. Then of course, he ask me to open my mouth wide, to which he said, "Yeah, your mouth is too small, your air passages too small too, you have sleep apnea, you need a sleep study done!" Of course, me being the smarta@#, I asked for that in writing!!!

He prescribed a sleep study, and some physical therapy on my neck. He told me to try 10 sessions and see if my headaches have improved. Well, after 10 sessions, the difference is, my neck pain is worse and has increased two-fold...at 5 seesions, my left side was worse than my right, and the left side had not been hurting (my neck pain radiates down into my shoulder on the right side, now the left is worse), plus, my headaches have not changed. But, I did give PT a try, and that's what counts.

My appt will be soon to do my night with a CPAP machine, so they can see how well I do with it. I too, take B12, a sublingual methycobalamin 3000mcg. I have been taking B12 for over 3 yrs now.

Last week, in another forum, the administrator bumped an old thread up for another person. I was reading the thread, and the initial question was: How do you think things have improved for you since going gluten-free. I posted twice in that thread, in 2004, four yrs ago, and four yrs into my gluten free life. I posted that many things had improved, but not my sleep. That I was still having issues with sleep--I do not remember ever thinking I had sleep issues. Someone told me that my memory has just erased those thoughts and memories. They say sleep apnea does that to a person. WOW huh?

[caek-is-a-lie]

Provigil has gluten so it's no wonder you chucked it. When I tell doctors it didn't help me they say that's not normal and infer I don't have Narcolepsy. silly. I never even knew until a couple of weeks ago that it has gluten and now I think "well no wonder!" But it's not like they'd listen to me anyway even if I did try to explain it.

Glad to hear about your dog. I had a dog like that years ago. If anything was wrong with me she'd lie on top of me to "protect" me. It was sweet.

[chatycady]

Poor carbohydrate digestion causes me to have night mares, night sweats, leg spasms/cramps, tingling and racing heart. I will wake up from an adrenaline rush.

I'm following the Specific carbohydrate diet, which is gluten free. I now sleep fine, but it took time and 2 years of searching for the right diet. Good luck, I hope you find an answer.

chaty

[AliB]

I agree with Chaty - for anyone who still has sleep issues, check out the SCD - it does work.

I realised shortly before my digestion collapsed that my years of restless sleep and restless legs were down to my digestion although I didn't know why.

When I dropped the gluten and dairy, it went away. I still get it occasionally if I have eaten something that my digestion can't cope with but generally I sleep much better and rarely get any problems with RLS - I now know that it is not my legs I need to move, but my lower back to get the 'transit' moving!

I haven't had one, but I do wonder if having a colonic would help too. The colon gets clogged from all those years of food 'abuse'. As the meridian nerves run down the spine to the legs, when the stool hits certain spots it triggers nerve reactions in the feet and legs. Maybe the colon is bulging in certain areas due to the clogging.

Sorry this is such a gross subject but it is relative to the subject!

As so many drugs often do more harm than good I would be very reluctant to consider that avenue, and anyway, if my health issues can be solved by something as simple as changing my diet - what's the point of clogging my body up with even more toxic rubbish??

We spend years chucking garbage down our throats without a second thought then can't figure out why our body has gone wrong - most of the stuff out there that passes for food is like sewage to the body. If you put inferior fuel in your gas tank, eventually the vehicle will break down. Our high-carb, high-sugar Western diet is poison to the body. Prescription drugs don't cure the illness, at best they just mask the symptoms and into the mix just end up putting an even higher toxic burden on the body when it is already struggling to cope.

[chatycady]

Here! Here! Alib.

I've been gluten free for two years, but couldn't figure out why I wasn't getting any better. I believe the SCDiet needs to be advertised more on this website. I read alot of things here, but missed the SCDiet. I eliminated all sorts of things, but still wasn't feeling that good. I knew I had a problem with carbs as I had hypoglycemia, but until I bought the book and read it did I discover that it wasn't totally a Pancreas problem, but more of a intestinal problem.

All celiac's should be aware that they may have trouble digesting carbs, which creates a host of problems. Sleep, muscle, brain, eyesight, digestive, and on and on. The book explains it all, and although celiac's can not be "cured" they can be healed and live healthy lives!

Spread the news!

[WW340]

I have been having terrible insomnia for a while. I just had my regular 6 month blood work done and they added a vit. D level, which came very back low. I am now on super high doses of vitamin D and have been sleeping much better. In fact, from my very first dose, sleep has improved. I get very sleepy the day I take the vit. D and am still sleepy the next day, but I am sleeping much better every night. My energy is finally starting to improve now that I am getting a good nights rest. I have been on B-12 shots for a while, now the nascobal spray.

I may have to check out the SCD diet. I already know I cannot eat very much of even the gluten free flours without getting gluten-like symptoms.

[AliB]

There is an SCD thread on the 'Other Food Intolerance' section in this forum, and the two main websites are 'breaking the vicious cycle' and 'Pecanbread'. As the interest, and good response is growing, new sites and recipe blogs, etc., are springing up all the time which is also very helpful.

I have also started an SCD recipe thread on the 'Recipes' section on here, to which we add good SCD compliant recipes as we come across them.

I too sleep much better than I used to and rarely now suffer with things like restless legs which was obviously connected to my digestion (unless I 'cheat' on the diet and eat things that my digestion can't really cope with).

If you want to know more, please feel free to ask questions on the SCD thread - we are all there to support each other and it is a fantastic resource.

[Amber M]

I have ALWAYS had sleep issues. I always either slept too much, or too little (it comes and goes in cycles). And I've had sleep paralysis my entire life (first episode I remember at 6 years old). I finally had a sleep study done in 2006 (just months before I went gluten-free). They said my sleep cycles were... "weird". Frankly I was too tired to pay much attention, but I had only a few min of "stage 2" sleep, 0 REM, and a SUPER LONG (like triple the accepted norm) stage 3. They said there was nothing they could do buy make me use a CPAP. I still have no idea why and I chucked it after 3 months of no sleep. I was literally going insane from lack of sleep when I was trying to use that thing. DH was trying to find a mental hospital to check me into because of my crazy behavior when the power went out 1 night and I got a FULL NIGHT'S SLEEP without it. After that it was GONE! I had symptoms of narcolepsy, but my insurance wouldn't cover a daytime study, so my doc just gave me provigil which made me even crazier, but still didn't help me feel awake. So I chucked that too. After I went gluten-free (almost 2 years ago), I've been feeling MUCH better. I still wake up naturally for about 15-20 min every 2 hours (which makes me the perfect infant overnight babysitter my friends have discovered! ), but I only need about 8 hours to feel pretty rested with the occasional nap in the winter (when I tend to have a lot of joint issues and resting really helps). My vit levels have been tested a million times and I'm back to normal range now (have been for about 1 year).

The sleep paralysis remains though. In fact, before we got our dog Ninja, I had rare episodes lasting for hours (I could see the clock, THAT SUCKED), and I had shorter episodes EVERY NIGHT. Amazingly enough, once we got Ninja, he started waking me up at night (which I found irritating at the time) until one day I could feel myself sinking into it when out of nowhere he tackled me, barking and jumping on my chest (he's a 45 lb dog, ugh!). When we went on vacation (and couldn't take him) the episodes came back and suddenly I realized I hadn't had one in MONTHS!!! He still pushes me awake once or twice a night, but I haven't had any problems since!

I also didn't have many digestive issues, but I had TONS of neuro stuff happening. Not one of the 12 doctors I saw during that time saw anything, but it took 10 min of me "googling" my symptoms to find you guys! Thank goodness!!

Sorry if that was rambling and pointless!

I've had sleepers paralysis for over 30 years, I totally understand!! I have gluten ataxia. 5 months gluten free, I haven't had a migraine but only once. (been on meds for 30 years too). I have cut down on the meds a little so far with good luck.

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. My symptoms are getting better and I am in hopes to completly recover. I couldn't even walk straight 5 months ago, so I am improving greatly. I am sure that the gluten is what caused all of it. (maybe other grains too)

I have had digestive issues too, but nothing like the neurological stuff.

Dogs are so intuitive, the best thing you could have done, getting your dog. God bless him.

Wish I had had one when I was at my worst. To be concious and not be able to move is the scariest thing ever! I thought I had epilepsy in my 20's. Finally got diagnosed by a neuro. in my 30's.

[caek-is-a-lie]

To be concious and not be able to move is the scariest thing ever!

This happens to me, too, but it's Cataplexy from Narcolepsy. I think the gluten actually caused my Narcolepsy. When I eat it, I fall down spontaneously for 3 days. (I also become paralyzed form laughing at jokes, but it has nothing to do with food.) What paralyzes you?

[chatycady]

very interesting about your dog. I would spook my horse just by walking up to her. She must have sensed my racing heart. It raced all the time. (Enlarge heart) Now since I'm getting better, she's much more mellow and calm. But then again so am I!

I used to trip over my own feet, couldn't walk a straight line, and would get very dizzy and have motion sickness. That stopped shortly after I went gluten free.

I accidently glutened myself just last week on chicken soup. (Homemade from a gluten injected chicken!!!) I got so sleepy. I was able to finish work, but when I got home I slept in my recliner off and on, and then went to bed and slept another 8 hours! I am on the SCDiet and have no trouble sleeping now. But it wasn't until I found the SCDiet did I get a good nights rest.

[caek-is-a-lie]

Sleep docs know NOTHING about celiac & sleep. But I can tell you I have Narcolepsy and I can be med-free when I'm gluten free. They're totally related. You WILL feel better as you heal.

So, don't expect a lot from your sleep doc, but keep going with the gluten-free diet. It will help you a lot. I have a blog about food & sleep that you can access from my profile page.

Good luck and keep us posted!

[AliB]

I accidentally glutened myself just last week on chicken soup. (Homemade from a gluten injected chicken!!!) I got so sleepy. I was able to finish work, but when I got home I slept in my recliner off and on, and then went to bed and slept another 8 hours! I am on the SCDiet and have no trouble sleeping now. But it wasn't until I found the SCDiet did I get a good nights rest.

That is interesting Cady about the chicken. I often get a lot of mucous after chicken soup - I'm bunged up for a good 2 hours or so after - it could be gluten, although I don't react to it much any more, but I suppose it could be something else in the chicken - anti-biotics??? I dread to think what they inject them, or feed them with these days.

I seem to be ok with the flesh but not the boiled chicken carcase stock. When next I can afford an organic chicken I will have to try soup with that and see if I get the same effect.

On the subject of sleep I have just started an oil-pulling experiment. It is my second day and this morning I couldn't wake up - it was 11.30 when I finally got out of bed! I am usually awake by 8.30. Bit more than a co-incidence I wonder?