[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]

Heather9500, on Mar 4 2007, 12:29 AM, said:

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.

[capshert]

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...

Capshert@yahoo.com

Catherine
Gluten Free since Feb 04!

[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]

cloesb, on Mar 22 2007, 01:20 AM, said:

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]

Heather9500, on Mar 4 2007, 01:29 AM, said:

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?