Can't Stay Awake

[AntiGluten]

My biggest and worst symptom is that I get fatigued to the where I can't stay awake. It really interferes with work and school. I have trouble staying awake in class a lot of the time and I can't help it. I don't have a job because pretty much everyday I have to take a nap just to make it through. I was wondering if anyone else has had this same type of thing with them and what they do or have done to make it better (preferably go away completely). I first noticed my excessive sleepiness when I was in Japan for a two week exchange program with my school. I was dozing off on trains and in the classroom. My friends started to call me Grandpa Simpson. It's not only extremely annoying and frustrating, but embarassing at times too. This semester I'm taking a jogging class to help get me back into shape since I havent done any sort of physical activity since sophmore year of high school. Hopefully getting my body in shape will help with my fatigue. Thanks in advance for any input or advice.

Lee

[aldociao]

Lee,

There is a very interesting book, "The Promise of Sleep" by William Dement, MD, that you might want to look into. It deals with just about everything dealing with sleep and its vital importance to one's health--mostly overlooked, Dement thinks, by the health professions. There is a chapter on narcolepsy, which may or may not be involved in what you have been experiencing but it might shed some light on your condition. I found his treatment of "sleep debt" fascinating reading. I have tried, after reading about it, to cut down on mine. It might be just something as simple as this that could solve your problem. --Aldo

[angel-jd1]

Lee-

I am in college also. I find that it really helps to listen to your body. When you get those tired feelings don't ignore them Take a nap!! It will only get worse if you don't.

Eat good foods. Eat a good meal (not junk). Take a daily vitamin. Take some time out of your day to just chill and watch your favorite tv show or whatever. Give yourself a mental break too.

College is stressfull enough without a disease!! ha Give yourself a break once in a while. You can't do EVERYTHING!!

-Jessica

[Sylvia]

Dear Antigluten: I too usually have to take a nap to make it through the day. I also have developed a sleeping disorder, severe rapid leg movement, that prevents me from sleeping at night without medication. I do have days when I can get by without sleeping, but they are rare. In fact, I am currently on disability because it is impossible for me to work with this constant and chronic fatigue. I have talked to other celiacs that have the same problem, and there doesn't seem to be a definitive answer yet from the medical field. My GI feels it is related to the Celiac disease, and my endochronologist reminded me that Celiac disease has system wide effects. I have found that I really have to pace myself. I drove my grandson home ( at two hour trip) and then slept for 3 days. I have good luck with reducing my schedule, planning for a nap, and realizing that after a busy time (a trip, visitors, etc) I will need extra sleep. Hang in there. I believe there is a lot they don't know yet. Sylvia

[YankeeDB]

Lee, have you considered a sleep study to check for apnea or periodic leg movements? If you snore and periodically stop breathing while sleeping, apnea is a good hypothesis. Definitely read up on sleep disorders as you may have a condition besides celiac that is causing this symptom. Good luck!

[JoyS]

Hi Lee

I was glad (in a way) to see your inquiry, although I dont have any answers for you. My husband is newly diagnosed with CS and many of his symptoms differ. He is always tired, particularly in the mornings after he wakes up. When he wakes up he has chills and hot flashes which might be making him tired. He takes a nap in the afternoon, 2-3 hours, and he always feels better then. At night he has leg movements, but he is not snoring at the time, as one other respondant noted. It doesnt wake him up, but it does me.

Other symptoms he has is a generalized rash over the trunk of his body. Does anyone else have this? Does it go away?

I just want to commend you for using this site and reaching out the way you have. You're exploring all the avenues and go on with fulfilling your life. Congradulatons and keep up the good work!

Joy

[jeremy'smom]

Dear Lee-

i read an article on both poor absorption of minerals causing lack of sleep, as well as one on a celiac patient's inabilitly to digest magnesium, and instead secrete calcium. Has anyone heard of either theory? My four year old son has celiac and falls asleep during gymnastics class, my gluten-free husband has to take 3 hr naps as well.

According to my holistic chiropractor, the parts of the body are directly affected by the exact time of day. I suggest you keep a diary of your sleep patterns (when you have trouble sleeping, when you have trouble staying awake and see how they relate to the body. (For example, the intestines are supposedly linked to 1-3am and this is the exact time frame with which i battled sleep issues with my son from his birth on. He wasn't diagnosed until 6 months ago. Also, vitamins, water and exercise (during a non-drowsy time) seem to help Jeremy.

good luck!

brooke

[Tori]

I started regaining my strength when I started taking liquid multi-vitamins and "no-shot" sub-lingual vitamin B. Regular vitamins didn't absorb well for me or something. Maybe it would help? I'm new to this too.

[smack]

I had this problem, I used sleep about 16 hours a day, go to work and then go to bed. It was because my iron was low. I got my iron stores back up through suppliments, but I still tire quite easily sometimes.

Perhaps you should get your iron levels checked if you haven't in a while.

I've heard others say that fatigue is one thing that many celiacs are constantly dealing with. I try to get 8 hours sleep on a regular basis, helps keep the tiredness at bay.

Good luck!

[ham&ex]

I too used to be insomniac at night and narcoleptic in the day. I put a end to that by taking iron and vitamin C in the morning and calcium/magnesium at night.

Voil

[coveowner]

I found that I can sleep 8 or 9 hours at night (up a time or 2 for bathroom) but have a lot of energy during the day. However, I take a lot of vitamins to compensate. My husband, however, who is diabetic, can not stay awake when his blood suger is high. You might want to check your blood suger sometime. Those of us with autoimmune stuff such as whacco -thyroid and celiac disease sometime develop diabetes also. I haven't, but some do.

Rose

[tylormom]

This is my first time posting here, and I have to say, I am very glad to have found this place! I was diagnosed 2 years ago this month. I am once again battling anemia, which I believe is the cause for my constant tiredness. The problem is that I also have difficulty staying asleep at night. I wake up 3-4 times in a 5-6 hour period! That doesn't make for very restful sleep! I haven't found any answers yet. My doctor has tried a number of things... still working on it! I'm interested in hearing more about the vitamins. I am presently on an iron and multiple vitamin supplement.

Thanks for all the information!

Darlene

[bluestar]

I was diagnosed 5 years ago. My sleep is the only thing that has not improved. I sleep 4 hours a night and have done so for 30 years. Perhaps it is not related to celiac disease. When I get 7 hours of sleep (it does happen every few months) I awake with a new clarity and only then appreciate what it is to get a truly restful nights sleep. I too take calcium, magnesium................. It did help convert my osteoporosis to normal in 1 year, but it did nothing for my sleep pattern. I have resolved to simply accept my sleepless state.

Good Morning. Marc

[seeking-wholeness]

Marc, I have read that liver/gallbladder issues can seriously affect sleep quality. This might be something to look into, since anyone who has ever eaten the "standard American diet" can hardly avoid having at least some trouble in this area! I hope you can find some cause for your insomnia, so you can treat it and start getting some healthy, restorative sleep!

[bluestar]

Thank you Sarah for the reply. As you know celiac disease is primarily a gastroenterological disease with the entire body being affected. So, it would make sense that the liver/gallbladder could be affected in that they are part of the g.i. system. I have, however, been tested for liver/gallblader disease, as should all celiacs. It requires a simple blood test. My tests were normal. I wonder if my sleep pattern could have developed over years as a child with c.d. and that pattern remains. Again, it could be that it has no relation to being a celiac. We have a tendency to attribute all of our problems to c.d. Lastly, I don't eat the "standard American diet". I eat as healthfuly as possible. No junk food.... and I eat only kosher food as well. If people feel limited on a celiac diet imagine limiting it furhter with only kosher food.

Marc

[JoyS]

Hi Bluestar

It sounds like you are doing all the right things with CS...staying Kosher and with good foods. Not to sound like "got one better", but add on being a diabetic and counting carbohydrates too!

[ker]

This is so exciting to me!!! I have been recently been diagnosed with narcolepsy, (the symptoms of which are: excessive daytime sleepiness [which is a gross understatement - in some states they take away your driving liscence if you have narcolepsy, because the sleepiness is so debilitating], audio/visual hallucinations, entering REM sleep within 3 minutes of falling sleep, instead of the normal 45 minutes) I have heard a tiny bit online of a possible connection between that disorder and celiac, and it seems I am finding more evidence!

Do any more of you with Celiac Disease have the above symptoms?

The medical community is currently medicating narcoleptics with some pretty strong stuff (which I stopped, because of the bad side effects) If someone could prove a connection between the two, a gluten free diet could be LIFE-CHANGING for narcoleptics. The message boards for narcolepsy are filled with discouragement and despair, as people try to battle the disease that has no cure as of yet.

If I was a researcher, I would do a study.

Does anyone know how to get a study done on this topic? I know the medication companies wouldn't like it, as they would loose millions on Provigil, the drug they are currently toting as the best bet for narcolepsy. gluten-free is such a better solution!!!

-ker

[guppymom]

My daughters and I were all diagnosed last fall, and this is the one area that my eldest daughter and I still struggle. I get terribly tired, not sleepy so that it is debilitating, but tired. Before the diagnosis i'd get so sleepy that I absolutely could NOT stay awake. But I was hoping that the fatigue would ease a bit more.

I'm also finding it hard to kick a sugar habit that has crept up since then. It makes the fatigue worse, I know, and just generally makes one feel icky. So, that's my big battle now.

And the occasional "wahhhh" since eating is more complicated still. We're getting more used to the new menu, but I get tired of having to cook everything all the time! I miss opening a can or ordering take-out! Of course, it's all okay since I don't have to live in the bathrooms or groaning in the chair anymore!

[tweener]

I had a sleep study done at Hershey Medical Center, I was diagnoised with Excessive Daytime Sleepiness. They do an excellant study and it is one of the top study centers. I have been put on Adderall, and have been doing better. The doctor has linked mine to insulin resistance and I also just recently started taking Glucafage. He doesn't have enough Celiac background to tell me it that could be a contection. I was falling asleep while attending church, at work, and even driving. The driving part scared me totally and I made my family doctor look for the cause. I drive 1 hour each way to work and I would have to stop and take a nap on the way home, it was very scary because I didn't always know when I would dose while driving. I never had an accident and I wanted something done to solve my problem before this happened. It was also effecting my concentration level the fatigue is terrible and memory problem was horrible.

Good luck,

Tweener

[seeking-wholeness]

guppymom,

I keep some canned foods in the pantry for when I have only myself to feed and I don't feel like cooking. They're not exciting, but they get the job done. For a complete meal I will eat one (7.5 oz.) can of salmon with skin and bones and NO salt added (I salt it myself), one or two cans of plain vegetables (peas, green beans, or no-salt-added corn), and a small can of pineapple chunks in JUICE. It's especially nice because I don't mind eating the vegetables at room temperature, so I don't even have to heat anything up! Maybe there are some canned foods you could enjoy every now and then, too.

Come to think of it, it's lunchtime, and I am out of leftovers, so...it looks like there's a salmon and veggies meal in my near future!

Take care!

[fanfaire]

This is a very interesting topic....I had no idea celiac disease could contribute to sleep problems. I already have plenty of problems both with fatigue and with not getting good sleep due to fibromyalgia and Sjogren's. My doctors are stumped as to how to fight this horrible fatigue. I fall asleep at church and at work, even if I've had 10 hours of sleep the night before. I can't blame my problems on the typical American diet, either. I have both celiac and gastroparesis, so in addition to no gluten, I also have to avoid sugar, fatty food, fried food, chocolate, caffeine, carbonation and citrus juice. I think if I eat one more plain broiled chicken breast I will gag.

I'm afraid I have no solutions to offer on the fatigue other than to have a sleep study done to see if there is room for improvement in your nighttime sleep. I must rely on sleep aids, both over the counter and prescription...otherwise, I never reach stage 4 sleep and bounce from stage 3 to stage 1 approximately every 20 minutes, which is NOT conducive to feeling rested. Once your nighttime sleep is good, the daytime drowsiness might lessen some.

I agree a lot more research needs to be done on autoimmune fatigue....I think it is the most under-treated symptom, yet one of the most debilitating.

[YankeeDB]

I'm beginning to suspect that other food intolerances besides gluten can be a factor in fatigue. Perhaps poor disgestion allows other chemical to impact us in ways that make us tired. I.e., the body is working SO hard to try to metabolize all this stuff.

I've started keeping a detailed food diary with ratings of various things (energy level, sleep quality, bowel movements, and foot pain so far) to try to relate diet to all these factors. So far, I suspect that ANY dairy products are problematic so I've eliminated whey and cheese in addition to the milk that I already know was a problem. Now I'm wondering about certain soy products (fermented soy like soy sauce, and soy lecithin) but the results are not all in. Corn looks suspect too.

It DOES get tiring monitoring the diet so closely! No WONDER we're all fatigued!

[Guest laughs8]

Before being diagnosed, I was falling asleep in class on a daily basis, not to mention needing to lie donw after school and taking incredibly long to get up due to pain in the bottom of my feet/calves. In addition to the gluten-free diet, my doctor had me taking shakes made w/ a powder called Medipro (metabolic support system). It's made by a company called Thorne Research, and it seems to have largely done the trick. It's got a bunch of amino acids, lots of protein, and enough vitamins/minerals to substitute for a daily multivitamin. While I'm no longer taking 2 shakes a day, I do notice a difference on days when I'm too lazy to pour some juice and fruit in a blender.

As an aside, to YankeeDB--soy sauce contains wheat! You can get something called tamari though, which is wheat-free and similar tasting. Also, the really cheap soy sauce that comes in packets usually doesn't have wheat, although I can't vouch for the potential contamination of the other, chemical ingredients.

-Emily

[YankeeDB]

laughs8, interesting about the Medipro mix! I'll definitely look into that. I also have foot pain so our symptoms sound rather similar. Did you use the Medipro in addition to regular meals or in place of?

Even LaChoy soy sauce (claimed to be gluten free) seems to be bothering me but I'm not sure yet.....

[seeking-wholeness]

YankeeDB,

I don't think LaChoy soy sauce is fermented like most other soy sauces--at least it is certainly not "aged." I believe it is mostly water and salt with a bit of soy and caramel color to make it look right (and maybe some preservatives as well; I can't remember)! I wouldn't be surprised to hear that it is causing you problems, but they may not stem from the soy if there are preservatives added. I have always hated La Choy soy sauce, but I have discovered that San-J wheat-free tamari is really delicious. I hope you figure out which foods you are sensitive to in short order!