Help! Oversleep & Fatigued

[Heather9500]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

[cyberprof]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

Hi Heather,

I'm really new at this (diagnosed 2/9/07) so I hope others will chime in. You don't say when you were diagnosed and whether or not you've been able to follow a gluten-free diet (or if you've had accidental glutening events). If it is recent, you may just need to give it time. Or if you are still getting some gluten, that could be the problem.

But with that much fatigue, you should be asking your doctor for more help: You may be malnourished, have a vitamin/mineral deficiency, have some other food allergy or intolerance (soy, milk, casein, corn are possibilities) or you may have another medical problem like Multiple Sclerosis, diabetes, thyroid problems, Lyme disease or even leukemia. Not to scare you but there might be something else going on.

Just keep asking until you get some answers. And I'm sure everyone here can help with support that you aren't getting IRL (In Real Life). Best of luck.

Laura

[RiceGuy]

I used to be much more fatigued than I am now. The things which have helped me most with this are a sublingual methylcobalamin (vitamin B12) supplement, and a magnesium supplement. They are things which Celiacs are often deficient in too, and tests don't always indicate it.

As has already been noted however, you haven't stated whether you have been gluten-free. That alone may be all your body needs, though it may just take time.

[ianm]

I used to be extremely fatiguied and could easily sleep 24 hours straight. Once I went gluten free the fatigue went away and the energy levels increased. When I do get glutened the fatigue does come back but at a level that is manageable.

[akceliac]

Heather9500,

If it is possible to see a doctor -- preferrably one that is not offended with an assertively proactive patient -- ask to be tested for B12 and Vit D deficiencies. Get the testing done PRIOR to taking additional B12 and D3 (the preferred form of D). Also, request a CBC to test for anemia.

Though there are little if any side effects to taking too much B12, there is the potential for vitamin D to reach toxicity and your levels should be monitored when taking it in excessively high doses (i.e. 20,000 IU daily)

If you haven't had a DEXA scan, request it so that you can know the condition of your bones. If necessary, begin to add calcium and magensium as you can tolerate it. Not all supplements are created equal -- what works for one may not work for another. It is essential that you have adequate levels of vitamin D in order for the calcium and magnesium to be properly assimilated into your system.

There are several scientific articles on the web for B12 and Vitamin D which may help you in your research.

The biggest obstacle for celiac patients is finding a doctor that actually works with celiac and is willing to partner with you in managing the disease. A doctor's practice is limited by his/her experience -- sadly, there are not many who have experience treating celiacs.

[brendygirl]

If I haven't taken my morning vitamins, by late morning I can totally feel the fatigue. It is common for celiacs to be anemic and I need iron supplements.

I don't believe in addictive substances, such as caffeine, but I do eat fruit and sometimes M&M's when I'm desperate for energy.

A good tip is to keep snacks on hand everywhere to keep your energy up. I keep packets of instant grits and trail mix in my desk. I keep fruit leather and apples in my car and laptop case. I keep Tootsie Rolls and M&Ms around the house and in my purse.

You need to keep a steady blood sugar to avoid dips and lows.

Did you know that pulling over to exercise is recommended for drivers who get sleepy?

When I get my 3 workouts a week in, I feel better and more energetic all week long.

Don't give up, keep trying things! Good luck!

[Nancym]

Have you been evaluated for narcolepsy?

[StrongerToday]

And talked to your dr. about depression? Even if you don't seem depressed... there's obviously something else going on.

[c2737487]

HEATHER! MY DEAR!! Listen to me....I just went through this EXACT thing. The funniest part was that I knew something wasn't right and that I had to see a doctor - but I was too tired to make the phone call! It took me 6 months to even remember to make the appointment! HA! I swear that if I did not work for my father, I would have been FIRED. This darn near ruined my life - and I had a feeling that most people thought I was just lazy or over doing my social life! Little did they know - I HAD no life!

Anyway, I went to a Lung Specialist that my Primary MD sent me to - I was puzzled by that at first but now I get that they specialize in sleep disorders. I did a sleep study (overnight) and then another study the next day: They woke me up at 6am and then made me take a 20 min nap every 2 hours until 4pm.

I was then diagnosed with Idiopathic Hypersomnia. I now take Provigil every day and I have gotten my life back! It's a 100% turn around! I am BACK!!!

Good luck and stay in the fight! You are NOT supposed to be this tired and don't let anyone convince you otherwise!

Contact me any time if you want to talk...

[WakeupNurse]

I have to agree with capshert. I too was plagued by constant fatigue & sleepiness for years. I kept going to doctor after doctor saying "I'm so tired I can't get through the day, I have to take naps all day, then I sleep 8-12 hours a night and wake up feeling like I ran a marathon!" They kept saying I was depressed, most never tried to find any apparent cause. I had a sleep study that showed I had narcolepsy, after learning more about it I realized I had all of the classic symptoms. I now take stimulants that help make my day a little more bearable and sedatives at night to make my nighttime sleep more restorative.

Not saying you have narcolepsy or idiopathic hypersomnia, but there are a several sleep disorders out there that can cause you to be excessively sleepy (restless leg, apnea). It is definately something to look into because most people with sleep disorders don't know that they have them since they are so under-diagnosed. You sound very much like me prior to my diagnosis. Sleeping that much is NOT normal, and don't let doctors tell you it is, or that it's all in your head! Overwelming sleepiness is not the same as fatigue that you may have from celiac so if it's not improving with your gluten-free diet and is affecting your daily life you def. should have it checked out. Hope you find some answers that you were looking for!

[cloesb]

I feel like you....I went on this forum to see what others had to say about fatigue. I consistently get 8 hours a night but I literally can't keep my eyes open during the day. I've lost all my energy and my poor daughter is beginning to think I'm lazy. You all have motivated me to call my doctor - I'm going to do it today....plus my md told me to take freeda's prenatal vitamins & calcium supplements (not trying to get pregnant) and I haven't taken them in a while. I'm sending my husband to the store to get them and taking them immediately.

[gerberer]

I feel like you....I went on this forum to see what others had to say about fatigue. I consistently get 8 hours a night but I literally can't keep my eyes open during the day. I've lost all my energy and my poor daughter is beginning to think I'm lazy. You all have motivated me to call my doctor - I'm going to do it today....plus my md told me to take freeda's prenatal vitamins & calcium supplements (not trying to get pregnant) and I haven't taken them in a while. I'm sending my husband to the store to get them and taking them immediately.

These are thoroughly sensible responses.

I work as a Sleep technologist, I have sleep apnoea, and use CPAP (without it I am hopeless), and a sleep study is a must if you are sleeping more than 8-9 hours per day.

Good luck !!

[Nancym]

Well, I really hope this person followed up with a doctor (or doctors... if the first N were lame).

[Walter S]

I am newly diagnosed, so I am sorry that I can't really offer you any advice, but i am glad you posted this topic. I am right there with you. I also need so much sleep and I have lost all of my energy and drive. I really hope you get this figured out and feel better and I hope there is a good way to handle this.

[sleepy1]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

[sleepy1]

I am also new to this (2-22-07) and you sound just like me,but reading all of your replies I will be calling my doctor when I am done here. I already take Ambien CR to sleep at night and still wake up feeling like I have been awake for days but without it I wouldn't sleep at night at all (I have tried)but for some reason I could sleep all day with no drugs this also affects my work drasticaly and my home life does any one have any idea why this is? The doctors have been making me feel crazy for so long never finding anything wrong with me till now, could celiac's be my problem with sleep too or do you think there is something else wrong with me, and what about migranes does any one else get them I get 3-4 a week

[mm&j]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

Heather, Thanks for writing this. I feel exactly the same. My life since the fall has been getting up feeling exhausted after any amount (even 12 hours) of sleep. I'd get one kid off to school...go back to sleep, get the other to Kindergarten...SLEEP, get them off the school bus...SLEEP, get some kind of dinner...SLEEP or try to get them to do homework and to bed as soon as possible so I could get back to SLEEP. Obviously, my life goal has been to sleep for the past 8 or 9 months and probably I have been this way for at least 5 years. I am so cranky with my family when I am tired and fatiqued that I feel terrible about it. You are right that people don't seem to understand. My family is very understanding about it, but other people who might see me at a school activity, church, etc. can't figure it out because I am functioning at the moment that they see me...noone realizes that there is a pile of laundry to the ceiling, dishes and a dirty house and a rare occasion when my kids will get an actual meal out of me. I was diagnosed on good Friday, last week 4-5-07 and am wondering how long it might take before beginning to feel better after cutting out the gluten. I read all your replies and they have been helpful. Do you plan on having your children tested? Good luck to you.

MM&J (Susie)

[DestinyLeah]

Funny thing- I used to have the same issues with staying awake. After my hospital stint, during which I was on Iv fluids and iv vitamins, I have been able to say awake all day, so long as I take a multi in the morning, and take a combo of potassium, magnesium, chromium, and b12 twice a day after that.

The only time I have issues now is if I let myself over sleep. If I sleep more than 6 hours, I will not be able to get out of bed, and will get a migrane the second I step into a well lit room. (In order for me to sleep, my room has blackout drapes) I will also be unable to sit in a chair or car for more than 30 minutes without stabbing pain in my lower back, will have pain in my neck, and be unable to get back to sleep the next night.

Getting less than three hours of sleep in a night simply makes me feel a little groggy the next day- and eating usually clears that right up.

~Destiny

(Quit the job as a Baker, was losing adrenal function)

[KarenDianne]

I'm surely no expert and celiac disease is new to me too - however, while reading these posts, I had to add my two cents worth. Seven years ago I was diagnosed with fibromyalgia. At that time, I had it very severely...couldn't get across a room without being exhausted and aching severely all over. I could sleep and sleep and never get enough. Over time, I discovered through my rheumatologist, that when I slept it wasn't a rem sleep - I wasn't in a deep sleep and my body couldn't heal or recover. She put me on elavil which took a couple weeks to work (this allows you to get into a deeper rem sleep), and slowly I began to feel more rested, less muscle pain, and less like a zombie. Eventually, I was able to sleep less and felt more rested. I do still have all the other muscle-related problems but I've learned to live with them. I also had the wierd pains in my back and upper shoulder...very painful...and the terrible headache when I slept so much...so I understand what I think you're going through in that regard. Even now, if I sleep too much I end up aching all over and often have that bad headache (I find that an ice pack on my head helps - I used to think heat helped but it really didn't). My neck muscles also really hurt and contribute to the awful headache when I oversleep. I think your body, although you're "sleeping", isn't really in the rem mode and so your body reacts adversely to the lack of real sleep. I hope this may help - it's only my experience but perhaps it's something to think about. It helped me tremendously. Feel better...KarenDianne

I am also new to this (2-22-07) and you sound just like me,but reading all of your replies I will be calling my doctor when I am done here. I already take Ambien CR to sleep at night and still wake up feeling like I have been awake for days but without it I wouldn't sleep at night at all (I have tried)but for some reason I could sleep all day with no drugs this also affects my work drasticaly and my home life does any one have any idea why this is? The doctors have been making me feel crazy for so long never finding anything wrong with me till now, could celiac's be my problem with sleep too or do you think there is something else wrong with me, and what about migranes does any one else get them I get 3-4 a week

[barbara123]

Did you ever get over this? I have not been diagnosed with celiac disease, but i have been gluten free for 9 days now i have been doing better, (not vomiting all the time) but I am sooooooooooo tired, all the time. I can't even keep up with my house, and i cant work anymore. HELP Please

[lob6796]

My doctor told me that once I began the gluten free diet, I could expect to slowly regain my energy. In the meantime, he placed me on a low dose (25mg) of amitriptyline. It has the side effect at that dose of helping you to achieve a deep sleep state. He also put me on pain meds to take at night so that my muscle/joint pain wouldn't keep me awake, or have me tossing and turning. It has helped quite a bit. THe normal Ambien, etc did not work for me, but on nights I have a very hard time, I take an Ambien on top of the other meds, and the combination works wonders. Only problem is that I have a very hard time waking up in the morning. I hope that once I begin the diet that will become easier and I will be less dependent on the meds to sleep.

[barbara123]

My doctor told me that once I began the gluten free diet, I could expect to slowly regain my energy. In the meantime, he placed me on a low dose (25mg) of amitriptyline. It has the side effect at that dose of helping you to achieve a deep sleep state. He also put me on pain meds to take at night so that my muscle/joint pain wouldn't keep me awake, or have me tossing and turning. It has helped quite a bit. THe normal Ambien, etc did not work for me, but on nights I have a very hard time, I take an Ambien on top of the other meds, and the combination works wonders. Only problem is that I have a very hard time waking up in the morning. I hope that once I begin the diet that will become easier and I will be less dependent on the meds to sleep.

I have alot of problems sleeping, the pain med keeps me awake so i can either sleep (in pain so not sleeping well) or take my pain med and feel better and not sleep. i have tried to take ambien cr for sleep but doesn't work for me either. I am hoping the same after awhile on gluten-free diet, my sleep will start to get better.

[natalie]

I am newly diagnosed as well. I have felt extreme fatigue for so long. Not noticing much of a change yet.

[f-starmach]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

Hi,

I have been diagnosed with celiac in 1997. Being fatiguw all the time was my problem over 6 years. I have tried everything but nothing worked. My doctor tried every test but she couldn't find the reason. Then last week I was reading in one of the Celiacs forum on the internet then I found out B-Complex vitamin helps to Celiacs patients to get rid of many symptoms like fatigueness all the time. I started to take B-Complex vitamin everyday and in two days it made a huge difference. I can't believe the difference. I feel super energetic now. Due to our diet we have mal nutrition problem.

You should try it and see if it helps.

Thanks,

[cwj-tlj]

I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

Check out new drug called Provigil....Helps alot with daytime sleepiness. I couldn't function without it when I'm glutened. Thanks