Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can't... Stop... Sleeping...

Strawberry-Jam

Recommended Posts

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I posted this a little while back... (in a different thread, got no reply). well, now I'm in the same boat again.

"Today I basically slept all day. I went to bed at eleven last night, slept ten hours, got up for breakfast, slept for an hour or so, watched some TV, ate a tiny lunch, slept a few more hours, and then ended up sleeping from one pm to six pm (which is now). I'm tired enough to go back to sleep right now prolly, but I'm going to eat something first at least, and feed the poor dog.

Basically since I got up this morning I've been asleep more than I've been awake. My head feels funny. I don't have a fever or anything like that. Is this from gluten? I'm a pretty lazy person but not this freakin' lazy."

This time I slept nine hours last night, got up to eat brunch and watch TV, then slept about 2+ hours. My head feels funny and I could totally fall asleep again. My body is screaming at me to but I'm going to wait as long as I can and try to sleep at night instead.

I've been really careful about CC and food etc... not too much processed food, just bread from a local totally gluten-free bakery for PBJ sandwiches, or maybe rice chex for breakfast. I've tried to get better about washing my hands before meals. Maybe now I need to clean the crumb-filled kitchen from top to bottom? Idk.

How do you handle sleep episodes like this where you feel headachy and sick and can't get anything worthwhile done? luckily I'm not employed atm, but I mean to be soon.

I've dealt with extreme sleepiness before but that was when I was actually out and about doing things, not just sitting around eating and watching TV and then sleeping. I can't handle this; I want it to stop TT_TT I feel like a failure at life

there was a time when I first moved here that I fell asleep then woke up naturally 8/9 hours later and had energy all day. what happened to that...?

for supplements I take (ALL gluten-free) a multi with iron, D3 every day (my levels were borderline low), B12 once a week or so (used to every day till levels got super high), iron every few days (levels borderline low again), folic acid, and a calcium/magnesium/zinc tablet. I've been gluten free what, 3 months (it's in my sig i guess)? my antibodies, last time they were checked, were 157 or smth like that.

help TT_TT

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jackay Enthusiast
jackay
Posted

Sorry you didn't get any responses to your last topic.

I wish you could give me some of your sleep as I'm the opposite. I have so many sleepless nights and absolutely cannot sleep during the day. I am always exhausted, even when I do sleep.

Try cutting out the bread, Chex, etc. and eat just whole foods to see if that helps.

Good luck!

love2travel Mentor
love2travel
Posted

Sorry you didn't get any responses to your last topic.

I wish you could give me some of your sleep as I'm the opposite. I have so many sleepless nights and absolutely cannot sleep during the day. I am always exhausted, even when I do sleep.

Try cutting out the bread, Chex, etc. and eat just whole foods to see if that helps.

Good luck!

I'm the opposite as well. I have gone three full nights without falling asleep so feel barely functional. I have far more sleepless nights than those that I do sleep. I sleep well about once every ten days (mostly due to chronic pain). It's a rough cycle!

Sorry to be of no help whatsoever. Just chimed in because we all have such varying problems with this!

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

I did just want to add that *part* of the problem was probably dehydration. I feel a little better from drinking a ton of water about an hour ago. Not 100%, but good enough to go get some yard work done.

Sorry about your sleepless nights. I used to struggle with insomnia a lot as a teen and I think a lot of my sleep problems were gluten-related. But I could always nap during the day for some reason. Eventually with sleep hygiene, rationing out my energy, and sleep medicine (in my case ambien for emergencies and low-dose elavil every night) I was able to control my sleep problems enough to graduate magna cum laude from university and stuff. And that was BEFORE my celiac diagnosis. After the diagnosis and start of the diet I did two sleep studies which found nothing because the diet really started helping right away in that regard...

anyway, just wanted to say that it took me years and years of my childhood to figure out, but I progressed to having the opposite problem somehow. :/ so there's... hope? haha, idk

  • 4 weeks later...
Neshema1 Newbie
Neshema1
Posted

I have the same problem. Can literally sleep 3 days straight. My sleep doc says I need 12 hrs (and even then I have fatigue). I have periodic leg movements. I did not even know. I sleep at most one hour then wake up but go back to sleep & don't know. It csm be relayed to restless legs or neurological disorders. He thought I had delayed sleep phase disorder & restless legs but then I had a test. The medicine for it is making me tired. So, not sure what tp tell u but I hope the sleep neuro will help.

dilettantesteph Collaborator
dilettantesteph
Posted

You said something about cleaning a crumb filled kitchen. Maybe you need to have a gluten free household or at least get your house mates to be more careful with their gluten. You might be accidentally ingesting some. I think that would be more of a problem than the cereal.

domesticactivist Collaborator
domesticactivist
Posted

I agree you need to get rid of the cross contamination. I have a post on my blo linked from my profile called going 100% gluten free that may help.

It's also possible something else is going on, especially if this is an ongoing thing. Have you talked to your dr or been tested for thyroid problems or iron deficiency?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

yes, all my bloodwork has come back normal consistently--for thyroid and iron. My iron was always on the low side of normal, but I started taking supplements and it got better.

I need to be more vigilant about washing my hands, I think, definitely. I can't have a gluten-free house, but we try really hard to eliminate CC when preparing food. I have my own cutting board and stirring spoons, we use mostly unscratched nonstick pans, we wash things in a dishwasher, I wipe up with paper towels, I have my own strainer, etc. etc. I dunno. Staying hydrated helped a lot at least. and I need to exercise more too I think. but still have tiredness.

  • 2 weeks later...
MelissaBe123 Newbie
MelissaBe123
Posted

I am tired throughout the day no matter how much I sleep. I just slept 12 hours and had some chex for lunch and I want to sleep more. If I drink coffee or soda, it doesn't really help me feel more awake. And when I take a nap, I'm ready to go back asleep as soon as I wake up. It's a vicious cycle. All my friends make fun of me that I'm always tired. It's not my fault!

  • 1 month later...
strevis Newbie
strevis
Posted

I try very hard to be gluten free (2 1/2 yrs) but also have to avoid dairy, so have trouble sometimes figuring out what has caused what symptom. I do know that if I have accidentally eaten gluten I get bad joint pain for about a day and for that day and at least one more day I am exhausted. Incredibly body tired (not always sleeping tho). There has to be some connection. I know when I am "clean" I feel better than I have ever felt in my entire adult life and have WAY more energy.

  • 3 weeks later...
celiac sucks Newbie
celiac sucks
Posted

I was diagnosed with celiac disease 10 years ago and I have been gluten free ever since. I also experience a lot of fatigue and sleepiness. About 6 years ago I began with deilbating fatigue. I would literally sleep for 18-20 hours a day. I had to be woken up to eat and drink it was horrible and the doctors did not know why. About Two years ago my fatigue/ sleepiness did begin to get better but I was still very sleepy all the time. I recently went to mayo clinic and I finally got a diagnosis. Idiopathic hypersonimia. basically it is excessive sleepiness during the day. Tests to find this are to wear an actiograph which is a watch that measures your sleep patterns, and night time sleep study, and a day time nap study. I hope you begin to feel better!

cougie23 Explorer
cougie23
Posted

OK....we all agree that celiacs will make you bone tired...but what I want to know is,

are you getting enough fresh air? That will knock you out right there! is there enough circulation of fresh air in your home...and I'm NOT refering to the air conditioning!

Are you getting enough sunlight to prosses your vitamin D? What is the weather like where you live? Hot? muggy? cold and overcast?These conditions will just make you more tired on top of the celiacs! :( Also you need to eat more than ceriel and PB&J....theres probably half your problem right there! :blink::rolleyes:

Wheres the fruit and veggies? you can't just substitute one grain for another only...and your food sounds to procesed still! this is just my opinion.Sounds like your burning out and theres nothing GOOD and HEALTHY to refeul you!!! :)

I'd go with less processed...more natural...more sunlight( even if your just opening all the curtains and windows)and beleive it or not...a nice shower! not to hot (that will knock you out and zap your strenth), but nice(semi cool)...it's invigorating and gets the circulation going .A little stretching afterward...nothing to vigurous allways helps too! When your skin is clean you breath better AND feel better..a cool (NOT COLD) shower and a little strech will wake you up.Then go get a nice refreshing snak of cool sliced peaches or apples with maybe alittle honey drizzled over them !Don't forget a nice cold glass of WATER. Honey is a great energy booster and antioxident as well!!Try these things and see how you feel...it helps me! :D:D:D

smeej Newbie
smeej
Posted

I recently went to mayo clinic and I finally got a diagnosis. Idiopathic hypersonimia. basically it is excessive sleepiness during the day. Tests to find this are to wear an actiograph which is a watch that measures your sleep patterns, and night time sleep study, and a day time nap study.

I can't stand it when doctors give a "diagnosis" like that. "Idiopathic" MEANS "with a cause we can't figure out" and "hypersomnia" MEANS "sleeping a lot". So basically you went to a doctor saying, "Hey, doc, I've been sleeping a lot and I don't know why," then paid the doctor quite a bit of money and went through a few tests to leave with a diagnosis that, in medicalese, very literally means "patient has been sleeping a lot and we don't know why either". They told you absolutely nothing new!

This is why it takes so much to convince me to go see a doctor. Several thousands of dollars of tests later and I leave with exactly the same information I had when I walked in.

AVR1962 Collaborator
AVR1962
Posted

I have the trouble of wanting to sleep 10+ hours a night especially as the days shorten. The only real thing that I have felt has made as didderence is to actually get outside and absorb the sunshine thru my skin. I think it has to do with a vit d deficency and the vit d from the su helping the body absorb nutrients to the rest of your body. Make a poiunt to get outside, even to sit each day and see if it makes difference for you.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

I get outside for a 20 minute walk every day, or sometimes even 60 minutes of walking. But I live in Ireland, so it is very cloudy all the time. I do supplement vitamin D though.

  • 2 months later...
Mago Newbie
Mago
Posted

How do you handle sleep episodes like this where you feel headachy and sick and can't get anything worthwhile done? luckily I'm not employed atm, but I mean to be soon.

I've dealt with extreme sleepiness before but that was when I was actually out and about doing things, not just sitting around eating and watching TV and then sleeping. I can't handle this; I want it to stop TT_TT I feel like a failure at life

there was a time when I first moved here that I fell asleep then woke up naturally 8/9 hours later and had energy all day. what happened to that...?

I've been less vigilant on my diet the past 2-3 months and I've definately been in the same boat. The amount of over-sleeping I do seems to relate to how much gluten I ingest. Right before my diagnosis, I ate a handfull of crackers, and I was so tired I couldn't get out of bed for 2 days! Now I'm in the same boat again for not checking ingredients. I usually drink lots of liquids, eat soups, fruits, and easy-to-digest foods (though I crave everything but when I get glutened), and just sleep it out. It sucks when no amount of anything will keep you awake... I hope you get better!

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted
  • Author

I think it's hilarious that this thread was updated the day after I fell asleep at six pm and woke up at six am... but! I'm now gluten, dairy, and soya free, and keeping hydrated, and I don't have this problem really anymore. I slept 12 hours last night because I cycled 40+ km over the weekend and went on a 2 hr hike to boot. but on normal days I get by without any naps and I have more energy than usual... I'm not at 100% all the time, but who is? My magic number is between 7 and 9 hours of sleep a night.

  • 1 month later...
jeanzdyn Apprentice
jeanzdyn
Posted

I posted this a little while back... (in a different thread, got no reply). well, now I'm in the same boat again.

This time I slept nine hours last night, got up to eat brunch and watch TV, then slept about 2+ hours. My head feels funny and I could totally fall asleep again. My body is screaming at me to but I'm going to wait as long as I can and try to sleep at night instead.

.....................

How do you handle sleep episodes like this where you feel headachy and sick and can't get anything worthwhile done? luckily I'm not employed atm, but I mean to be soon.

I've dealt with extreme sleepiness before but that was when I was actually out and about doing things, not just sitting around eating and watching TV and then sleeping. .................

What you are describing about sleep and getting up and then an hour or two later going back to sleep --that is exactly what I have been experiencing! That is my weekend: sleep for 9 or more hours, get up eat, watch a little tv, and then back to sleep again for 2 to 4 hours. Then up for a few hours and back to sleep again. Sometimes I am only up for 2 hours at a time. Give me a place to lay down -anyplace, anytime and I can sleep. I have not gotten much done on the weekends in months, all I do on the weekend is take a lot of naps.

I do have to say that I was just diagnosed 2-1/2 months ago and have not stayed completely true to the gluten-free diet.

This sleep pattern on the weekends has been what I have experienced for most of the last year.

If I have a place to go, something to do, then I don't sleep as much, and it does not seem to affect me in a bad way at all. But, staying home on the weekend, then I take a lot of naps.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,563
    • Most Online (within 30 mins)
      7,748
    Bob Madden
    Newest Member
    Bob Madden
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.