Sleeping Disorders Linked To Celiac Disease?

[Waitingindreams]

Back in 2009, I started getting fatigued and exhausted very quickly despite my young age (only 22!) I would often fall asleep at the computer, fully dressed, and wake up a few hours later disoriented. Finally in August of 2012 I went and got a sleep study done. I was tested for narcolepsy and sleep apnea.

 

I was diagnosed with a disorder called "Idiopathic Central Nervous System Hypersomnia". It is, apparently, very similar to narcolepsy - except I don't have cataplexy and there was no REM sleep during my multiple naps. The sleep specialist prescribed me a drug called "Nuvigil" that is used to treat narcolepsy. I never took it, since it seemed like a very powerful drug, and it also was very expensive...even with insurance.

 

Nearly a year later, I was diagnosed with celiac disease. Since going gluten free, I would say that I am still exhausted a lot and tired all the time...but to a slightly lesser degree. I personally believe that the sleeping disorder is because of my celiac disease...but it's becoming more of a problem. I often drift off at work (I am an Administrative Assistant, so I do a lot of work at the computer) I asked my primary care physician about the connection between celiac disease and this sleeping disorder, and he brushed it off and told me there wasn't a connection. He said there is nothing he can do for me, apart from me taking the expensive, powerful Nuvigil. I really don't want to take it, but I also can't afford to be falling asleep at my job. I do my best to stay awake, but it's really difficult sometimes. I'm hoping that once my celiac disease is really under control, this sleeping disorder will be a thing of the past. 

 

Does anyone else have a similar experience with a sleeping disorder? What are your tips for staying awake? Will it get better? I really don't want to take this medicine if I can avoid it...

[Minstinguette]

Did you check your vitamins levels and your thyroid? Also make sure you identified any other intolerance you might have.

 

I looked up Idiopathic Central Nervous System Hypersomnia and it feels familiar. I used to think something was wrong with me because I could easily sleep 10 to 14 hours a night, sometimes even longer. I would have an extremely difficult time waking up, drifting in and out of consciousness and feeling "drunk". I would also feel very sleepy throughout the day.

 

Now after several years being gluten/corn/dairy free, it's so much better. I still need more sleep than most people and am not a morning person, but I feel "normal" again. I can wake up in the morning and I rarely feel sleepy during the day. When I feel like I need more energy I take blue-green algae, which helps me focus, or I do some yoga/breathing exercices.

 

I hope it gets better with time!

[Waitingindreams]

Thank you for your reply! Hmm, no I've never had my vitamin levels checked - I should look into that - but I did have my thyroid checked about a year or two before the sleeping disorder diagnosis. Apparently the thyroid is fine. I am lactose intolerant, but I still eat dairy (with lactaid pills, and far less dairy than I used to eat) - and I have seen that a lot of people are sensitive to corn but so far I don't think I have any issues with it. Thanks for the tips! I'm going to look into the blue-green algae. I'm assuming it's a supplement? I would definitely prefer natural methods (and/or dietary changes) over taking medicines. 

 

Thanks for the tips! I do feel more energy already, which is great...but now work is keeping an eye on me because I am so sleepy. How embarrassing. :\ It's also a concern about falling asleep at the wheel. I don't feel comfortable driving for extended periods of time because of this.

[Waitingindreams]

How do you know if you have a corn intolerance anyway? Would it be fairly obvious at this point? Most of the gluten-free products I eat (bread, bagels, etc) contain rice flour rather than corn...but I have eaten plenty of gluten-free corn chips and I eat corn with mixed vegetables and I haven't noticed any adverse reactions.

[cyclinglady]

Keep on top of the sleep apnea.  My FIL has it and never treated it.  He now has congestive heart failure.  So, do some research on this subject.  It really can affect your health (not just your employment!) 

 

Take care!

[Waitingindreams]

Oh no, I don't have sleep apnea. The sleep specialist thought I either had that or narcolepsy - so I was tested for both. Thankfully the sleep apnea test turned out negative. That is really scary when someone you know/care about goes through something like that. :\  My uncle apparently has it as well, actually, and he doesn't wear the mask either. The thought of needing that mask did scare me, but I would do it in order to make sure I stayed healthy. I can't get over how scary that is..it's not thought of as a serious condition but clearly it needs attention. : (

 

Idiopathic CNS Hypersomnia (what i do have) is not considered life threatening, and it's not -as- serious as narcolepsy, but it does have a lot of drawbacks. My main concern is really drifting off at the wheel. which thankfully hasn't happened yet *knock on wood*

[Minstinguette]

To respond to your question about corn, I didn't know I was intolerant until I took a food intolerance test. I know these are not always reliable, but in my case it was spot on. Corn is everywhere (think xanthan gum, citric acid, flavorings, preservatives etc.) so it's difficult to pin point a reaction to it. However, since I went corn free I have been feeling much better and I can now tell when I get "corned". I am not saying that you are necessarily corn intolerant, but it's good to keep in mind that other foods can also cause problems.

[Waitingindreams]

It's definitely good to keep in mind, but I don't think I have an issue with corn. I eat popcorn quite frequently, as well as steamed corn with other steamed vegetables. I don't think it's causing any issues, but I'll keep an eye out on it. It couldn't hurt to get some food intolerance tests done, does the allergist do this or can I ask my primary doctor? I've been seeing him a lot lately, I'm sure he's sick of me   Lol. I have so many issues...I can't wait until I feel like I have my health back on track again. It doesn't seem like I'm even close...

[StacyA]

"Idiopathic Hypersomnia" basically means 'excessive sleepiness without a known cause', with 'Central Nervous System' thrown in for good measure it sounds like (gotta love how giving something a long name distracts us from realizing we still don't have an answer) - so if you still have the problem once your celiac disease is under control keep looking for an answer.  It could also be initially caused by your celiac disease and then maintained by de-conditioning (ie are you so tired that you don't exercise? if so, lack of exercise will then make you tired, and on goes the cycle). 

[Waitingindreams]

I did know that idiopathic meant that there was no known cause for it. The CNS could be just thrown in...it was just very concerning that I could not stay awake no matter how I struggled and I was always tired. :\ The only option for treatment is a strong/expensive medicine? It was ridiculous.

 

I have found that I have more energy since giving up gluten, but I do still get tired a lot easier than I should. Yes, though - you are right. I did stop going to the gym for multiple reasons, and one of them was that I was too tired/didn't have enough energy. I just wanted to come home and unwind before waking up and starting the next work day. It's a process. I've only been off gluten for about four months, so I guess it makes sense that the problem isn't completely gone...but now I feel like I'm going to be overworked at my job to prevent me from falling asleep again. ugh. I told them i think it's because of the celiac disease because I truly do think that, but there's no real proof of that. It makes sense, though...

[w8in4dave]

I have sleep Apnea that is totally different. I do wear a mask at night. I fought it for years but finally decided to get tested because of being tired all the time and keeping hubbs awake. I have just figured out I am corn intolerant , I figured it out from a trip I took up north. I bought a bag of Frito Corn Chips and snacked on them on the way up north. That night I had such cramping , gas and the next morning was big "D" I didn't figure it out then, then there was another time same thing, I had some Frito's and I was in so much pain that night I almost called 911. It was mostly gas but OMG it was so painful , so I knew it was the corn chips. Then one day at a friends I had a coke. Yup it sent me to the rest room, I assume because of the Corn syrup in it. So I try to avoid Corn as much as possible. Crazy stuff!! 

[Chrisz1000]

Wow I can relate... 8 months in! This is me right here...

I did stop going to the gym for multiple reasons, and one of them was that I was too tired/didn't have enough energy. I just wanted to come home and unwind before waking up and starting the next work day. It's a process. I've only been off gluten for about four months...

[mickeymudge]

I did know that idiopathic meant that there was no known cause for it. The CNS could be just thrown in...it was just very concerning that I could not stay awake no matter how I struggled and I was always tired. :\ The only option for treatment is a strong/expensive medicine? It was ridiculous.

 

I have found that I have more energy since giving up gluten, but I do still get tired a lot easier than I should. Yes, though - you are right. I did stop going to the gym for multiple reasons, and one of them was that I was too tired/didn't have enough energy. I just wanted to come home and unwind before waking up and starting the next work day. It's a process. I've only been off gluten for about four months, so I guess it makes sense that the problem isn't completely gone...but now I feel like I'm going to be overworked at my job to prevent me from falling asleep again. ugh. I told them i think it's because of the celiac disease because I truly do think that, but there's no real proof of that. It makes sense, though...

 

 

 

The whole conversation struck me as very interesting, so I had to but in.  It's like I wish I had the know it all answer for your dilema, but I don't, which is frustrating.  I wasn't sure if you already got a blood test for food alergies, if not, do it.  You may also want to get checked for parasites, it just seems like something is taxing the hell out of your life.

Just to show you how off doctors can be, I wanted to share with you, what happened to me in March of this year.  I started to wake up in the middle of the night with anaphylaxis.  It seemd to upset me more than scare me because it was like once I was up, I could breath ok.  However if I just laid there, there was something wrong with my nasal passages that was chocking me out.  All I would have to do is cause myself to swallow, then I could breath again, go back to sleep for a couple hours.  I got my tonsils checked out, and they were fine. It was my only possible guess cause my girlfriends were so bac that she would sit up out of bed like a zombie and kick her arms and legs while sleeping, without knowing that she was doing it, and it turned out her tonsils were chocking her out, so they rushed her in for emergency removal.  Now she sleeps like a baby, even on her back.

 

I realized that I have always had a problem even just resting on my back, its as though I can't breath, so for about the last 20 years of my life I have always slept on my sides, and still do from habbit..  DR/s were all pushing me toward sleep apnea, and I refused to believe that because I didnt have a problem EVERY NIGHT.  I cut the culprits out of my diet that I was alergic to and went in for a sleep apnea test and the results revealed that I am more than 10x away from being burdened with sleep apnea.

 

This confirmed what I already knew, my throat was swelling up from food intollerances, and because your throat relaxes more when you sleep, it was only a problem when sleeping.  Now I can even lay on my back.  But doctors couldn't figure this out, and even after all the tests confirmed it, they still didn't want to believe it.  I'm alergic to Wheat, Dairy, and yeast.  So I can't have bread but I squeek by on getting wheat free bread.  Pizza just kills me. My girl friend will wake me up in the middle of the night to tell me I'm not breating. I can't have beer.  An odd one is Soy Sauce, I love to bury a medium serving of rice in Soy Sauce, and haven't had problems unless I eat it twice in a day.  Soy Sauce is apparently made from wheat, but has very little traces of wheat.

 

Every time I go to a gluten free store resteraunt, I ask them if a product has wheat in it, and they say no its gluten free, but I know for a fact the store I shop at sells wheat spagetti noodles that are gluten free.  I can't eat them, even though they are gluten free.  People always assume I have celiac disease, I have tell them nope, mine is much worse, I don't just get tummy trouble, or rashes or headaches, my throat closes up and I can't breath, so mine is life threatning

[mickeymudge]

I have sleep Apnea that is totally different. I do wear a mask at night. I fought it for years but finally decided to get tested because of being tired all the time and keeping hubbs awake. I have just figured out I am corn intolerant , I figured it out from a trip I took up north. I bought a bag of Frito Corn Chips and snacked on them on the way up north. That night I had such cramping , gas and the next morning was big "D" I didn't figure it out then, then there was another time same thing, I had some Frito's and I was in so much pain that night I almost called 911. It was mostly gas but OMG it was so painful , so I knew it was the corn chips. Then one day at a friends I had a coke. Yup it sent me to the rest room, I assume because of the Corn syrup in it. So I try to avoid Corn as much as possible. Crazy stuff!! 

 

You should get a blood test done to figure out exactly what your allergic to.  In my case I found out that I have a moderate intollerance to wheat, and a low intollerance to dairy and yeast.  However, its how my body decided to react to these that is important.  My throat swells up, which actually isn't a problem until I go to sleep.  Your throat relaxes even more when you are sleeping, and as a result my breating way is blocked.  I only suggest this to you because all of my doctors were strongly suggesting that I have sleep apnea, but after cutting the alergy foods out of my diet and taking a sleep apnea test they told me that I definatly don't have sleep apnea.  They are all just quick to push people into that catagory because of the connection with sleep.

 

Mine was so bad for a while that while I was walking around durring the day, I would feel a little chocked up here and there, but didn't alarm me cause I would just swallow and clear my throat and not think much about it.  I just never made the connection between what was sometimes happening to me durring the day, as also being the same thing that was heppening to me at night.

 

I have a MODERATE intollerance to wheat, yet its bad enough that if I eat a mcdonalds burger in the day, I will be waking up at night not able to breath.

I have a LOW intollerance to dairy and yeast.  Pizza kills me, the only thing on there I should be eating are the toppings, no crust and no cheese.

 

You might think that a moderate intollerance would allow someone to eat a little bit of it, but it would appear that my body has chosen to react to these in a very rare way.  Having anaphylaxis from food alergies is RARE, and its hard to me to explain to people that even though there gluten free food should be safe for me, what matters if wheather or not it has wheat, not gluten.  Mine is life threatning, so I have to take an epi pen with me and stab my leg in an emergency.

[w8in4dave]

You should get a blood test done to figure out exactly what your allergic to.  In my case I found out that I have a moderate intollerance to wheat, and a low intollerance to dairy and yeast.  However, its how my body decided to react to these that is important.  My throat swells up, which actually isn't a problem until I go to sleep.  Your throat relaxes even more when you are sleeping, and as a result my breating way is blocked.  I only suggest this to you because all of my doctors were strongly suggesting that I have sleep apnea, but after cutting the alergy foods out of my diet and taking a sleep apnea test they told me that I definatly don't have sleep apnea.  They are all just quick to push people into that catagory because of the connection with sleep.

 

Mine was so bad for a while that while I was walking around durring the day, I would feel a little chocked up here and there, but didn't alarm me cause I would just swallow and clear my throat and not think much about it.  I just never made the connection between what was sometimes happening to me durring the day, as also being the same thing that was heppening to me at night.

 

I have a MODERATE intollerance to wheat, yet its bad enough that if I eat a mcdonalds burger in the day, I will be waking up at night not able to breath.

I have a LOW intollerance to dairy and yeast.  Pizza kills me, the only thing on there I should be eating are the toppings, no crust and no cheese.

 

You might think that a moderate intollerance would allow someone to eat a little bit of it, but it would appear that my body has chosen to react to these in a very rare way.  Having anaphylaxis from food alergies is RARE, and its hard to me to explain to people that even though there gluten free food should be safe for me, what matters if wheather or not it has wheat, not gluten.  Mine is life threatning, so I have to take an epi pen with me and stab my leg in an emergency.

I have to go back to the Dr. Soon I will bring it up to him. Thanks for the advice  

[imahurtinunit]

I just signed on to this forum and it has made me think about my health history.  I can remember waking up during the middle of the night for hours since age of  5.  I have my whole life been extremely skinny.  Literally my whole life I have been a double zero.  I never thought anything of it.  I thought it was just the way I was.  I'd eat large pizza's in one sitting on my own.  I'd go to Burger King and get a Whopper and a large fry then on to taco bell and I'd get a beefy burrito and a taco salad with chips then on to McDonalds.  I never gained weight.  Within 3 weeks of me having both my children who were exactly two years apart and I breast fed, but I ate huge amounts of healthy foods and chips, and within 3 weeks I weighed 93lbs again.  I thought it was normal for me.  However I couldn't keep my breast milk in.  My whole life some mornings I would wake up feeling dizzy and drugged.  By the time I was 32 I also went to a sleep clinic exhausted.  I was diagnosed with anxiety.  I still after 13 years of trazadone and Paxil at times wake up with this deep fatigue. Over ten years ago my hair started falling out and it is down to maybe 1/3 the amount and I break out in weird rashes on the back of my head.  I have chronic folliculitis (which I have never felt it was folliculitis cuz it looks like acne and I treat it like acne and it goes down to minimal)  on top of weird acne.  I have been for years getting things treated individually.  I found out my sister who was always over weight is extremely skinny now.  She has never been skinny (I love her anyway) but I gained.  I think I may have some kind of thyroid or hormonal thing on top of hormonal woman stuff. .  My symptoms in all categories have gotten worse.  My point is you have made me think about all these years of me getting the wrong treatment because of lack of education. I went to the E.R. tonight and I have for weeks had a pain in my side like for inches long vertically.  I was out of there in 3 minutes.  Thank you for bringing something else to light.  I hope you fins your answers and feel better soon.

[daydreamer]

Back in 2009, I started getting fatigued and exhausted very quickly despite my young age (only 22!) I would often fall asleep at the computer, fully dressed, and wake up a few hours later disoriented. Finally in August of 2012 I went and got a sleep study done. I was tested for narcolepsy and sleep apnea.

 

I was diagnosed with a disorder called "Idiopathic Central Nervous System Hypersomnia". It is, apparently, very similar to narcolepsy - except I don't have cataplexy and there was no REM sleep during my multiple naps. The sleep specialist prescribed me a drug called "Nuvigil" that is used to treat narcolepsy. I never took it, since it seemed like a very powerful drug, and it also was very expensive...even with insurance.

 

Nearly a year later, I was diagnosed with celiac disease. Since going gluten free, I would say that I am still exhausted a lot and tired all the time...but to a slightly lesser degree. I personally believe that the sleeping disorder is because of my celiac disease...but it's becoming more of a problem. I often drift off at work (I am an Administrative Assistant, so I do a lot of work at the computer) I asked my primary care physician about the connection between celiac disease and this sleeping disorder, and he brushed it off and told me there wasn't a connection. He said there is nothing he can do for me, apart from me taking the expensive, powerful Nuvigil. I really don't want to take it, but I also can't afford to be falling asleep at my job. I do my best to stay awake, but it's really difficult sometimes. I'm hoping that once my celiac disease is really under control, this sleeping disorder will be a thing of the past. 

 

Does anyone else have a similar experience with a sleeping disorder? What are your tips for staying awake? Will it get better? I really don't want to take this medicine if I can avoid it...

 

I stumbled on this feed while trying to link many of the things I've been told I have. 

 

All through high school and college I fell asleep through classes despite the amount of sleep I got, caffeine consumption, or exercise. I always preferred naps to going out. I can fall asleep anytime. I started falling asleep while driving 5years ago. I could be completely awake and fine then startled awake. It's Extremely scary not to mention unsafe! It was only then that any doctor believed I was more tired than I should be. duh

 

Eventually (3 years ago) I was diagnosed with Idiopathic Hypersomnia. I've done all of the rx's despite the ridiculous cost. They haven't helped enough to outweigh the added side effects none lasting more than 4hours of wakefulness. I just feel like a zombie that's propelled forward, but not anymore awake. 

 

While trying to find out what was causing this extreme fatigue and many other symptoms I was experiencing I was diagnosed with Hashimoto's Thyroiditis (3 years ago). This explains basically everything else I was feeling. My doctor said he didn't want to treat it until I had my sleep problem under control.

 

I did not want to be on medications that I could avoid, so I looked up all I could on both diagnosis  and tried to "fix" what I could. Going gluten free was one of the biggest suggestions I kept finding; however, with many family members having celiac. I was NOT about to do that. I love breads and pastas. I did literally everything else, but with no success. 

 

I was at this time training for triathlons (unsuccessfully I might add) I do them every year. I was having a lot of problems due to my thyroid problem, and sleep disorder.  Then of course I started gaining weight rapidly and a few more symptoms I hadn't encountered before. Yay. As an athlete I kept a food journal and I easily noticed that I consumed a lot of carbs. (this had never been a problem before, but perhaps my age is catching up with me I thought) I cut back on my breads and pastas, and felt much better a few week later. I had gained so much weight, and felt so crappy that I did not realize I was extremely bloated as well. I kept up a low carb diet for a few months before I realized other things like sauces and dressings etc. bothered me as well. I went completely gluten free and have been for 2 1/2 years. I've not been diagnosed with Celiac. I know without a doubt I have it. (Many 1st degree and 2nd degree family members have it, the doctor did the biopsy after I had been COMPLETELY gluten free for 9mo. I detected it early on because of my food journals, and knowledge I had already had of Celiac disease. )

 

Like you, I feel slightly less fatigued since going gluten free, but in no way normal.

 

As I look back, I realize that I had a lot of these symptoms long before I realized there was a problem with my health. With medications I only feel comfortable driving for 1hour or so. Sometimes a LOT less. 

 

All of these are linked, I'm sure of it. I haven't found it yet,I was so relieved to see someone who thought the same way. If I really have this much wrong with me then fine, but I am not convinced. 

 

I find that iron helps some. Keep us updated on what your lab results are, I am interested to see what helps you. Good luck!

[Waitingindreams]

MickeyMudge - It seems as though you are no longer active on the forum, but in case you do come back to see this - I appreciate all of your input! That's really scary to have a dairy, wheat, AND yeast allergy. I would suggest trying a paleo diet - it is no grain, and no dairy. They sell paleo breads that are made from coconut/almond flours, though you'll have to check if they contain yeast. As for the soy sauce, they do have gluten free soy sauce out there. If you have a PF Changs near you, they have gluten free food with gluten free soy sauce...and apparently some brands make a gluten free version that you can buy in stores. (I know you said it isn't much of an issue as of yet, just wanted to throw that out there!) I think the paleo diet would be great for you. It's no grain, no dairy, and I don't think yeast is allowed either but I am not positive. 

 

As for being tested for allergies, I was tested right before I was diagnosed with celiac disease (so June 2013) and my arm swelled up from the prick test with the pollens/trees/grasses as I knew it would. I've always had severe seasonal allergies, but since going gluten free they have eased up a lot. He also told me I was allergic to peanuts (what? I just ate peanut butter before finding out my results, no kidding!) and I now carry an epi pen to be on the safe side. I plan on getting re-tested for the peanut allergy very soon, as I don't think I'm truly allergic. As for not breathing during the night, maybe I would suggest an air filter? Is there something else causing your allergies during the night - dust, pet dander, anything? I would look into that.

 

As for me, I don't think I have a parasite or anything close (though I was wondering if I had demodex mites that were causing my rosacea - so i asked my dermatologist to check  - no mites) I have actually found my energy levels have improved more after getting some blood work done and finding out I was deficient in folate and iron. I've also found that avoiding dairy (lactose) has been a huge help, as I am lactose intolerant. I think that was hindering my improvement tremendously, but I still fall asleep very quickly and often don't have a  lot of energy. I plan on getting re-tested for the sleeping disorder years down the line when I feel better/more energetic just to try to prove that I didn't need that medicine. Hope you are doing well!

[Waitingindreams]

imahurtinunit: Wow, that is really scary. Have you been tested for celiac disease? I would recommend getting tested, and I would get bloodwork done as well to see if you are deficient in any vitamins/minerals or if you have another issue, like an overactive thyroid, possibly. I hope you start researching and looking into other causes for your ailments, don't give up! Hopefully you can come back and let us know your progress. I would definitely look into everything, something is going on unfortunately I hope you're feeling better.

[Waitingindreams]

daydreamer: It really is a relief to find someone else that has been through a similar situation. And your comment has just confirmed for me that I made the right choice in not taking the medicine (though I was very close) 

 

With all of my skin issues and fatigue issues, I asked my doctor to do some bloodwork and it was found that I had an iron and folate deficiency. I started taking an otc iron supplement (Slow-FE) and a prescription strength folic acid. My skin improved slightly from the folic acid supplement, and my energy levels improved slightly as well from the iron...but having been put on iron pills years ago and developing a nasty fissure as a result - I am very cautious about using iron pills and I've decided that I only want to take them during my period. I think a huge cause of my issues comes from dairy, as I am lactose intolerant. I think it is preventing my weight loss, causing some of my skin issues, and making me feel fatigued. I am currently doing a dairy challenge in a blog on here (just started) so I am hoping to see great results from that. I also have an appointment with a naturopathic doctor later today, which is exciting. 

 

Could you potentially have issues with other food? Some people with celiac disease have corn intolerances, a lot are lactose intolerant or allergic to dairy, etc. Maybe there is something else you are missing. I'm glad going gluten-free has made you feel better!