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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can't... Stop... Sleeping...
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18 posts in this topic

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

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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!

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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!

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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

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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.

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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.

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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?

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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.

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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!

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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.

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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!

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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

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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.

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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.

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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.

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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!

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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.

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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.

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      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
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