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roxnhead

Just Not Sleepy/tired!

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I have only been gluten-casein free about a week now. (I've started yawning again.) My problem has been that I'm just not tired-in fact I'm wide awake sometimes I only sleep 3 hours a night. The next day of course I'm washed out! Very fatigued! RLS stocking feet-hot legs-it seems as soon as I start to fall asleep I get a hot-flash/nightsweat then I get up to use bathroom, get a drink of water and try again. I can tell if I'm glutened because my feet turn cold-also casein seems to make RLS worse. It is very hard for me to understand how eating something (gluten-casein)can in turn make your body unable to function properly! Almost all of my symptoms are nuero--I'm hoping to get back to work soon, I've been on disability since April with "Profound Fatigue". For those of you with primarily nuero symptoms how long does it take to feel strong again.

I also take Vitamin B-12 injections--and then I get tired---I swear I feel as though I have not been sleepy/tired/drowsy for the longest time. In my efforts to self-diagnose I found the term "wired fatigue" does anyone else feel this? Besides me, and if you have does it go away with the Gluten-free Casein-free diet.

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I have been experiencing the fatigue and nerve pain. Being celiac and having very little GI symptoms, I have now realized I'm dealing with other issues. I am waiting on results to see what my vitamin levels are. My ferrin and iron were fine, but now I believe my B12, B1, and/or Vitamin D are a little off. To stop the RLS I am currently taking a Advil PM for the pain and to get some sleep (that is the only pain reliever I take). With a good 8 hours rest I am able to get helps me get thru the next day. I believe my issues are the lack of absorption in the small intestine - now I'm seeking help to prove/disprove that.

Jennifer

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It is very hard for me to understand how eating something (gluten-casein)can in turn make your body unable to function properly!

I spent the last three years of my life totally tired. I was unable to work a normal job also. When I realized it was the gluten that made me have to take naps I did not really care how it worked, I just wanted to join the world of the living again.

Everything you put in to your body has an effect on it. I am sure that you would have a strong reaction to eating drain cleaner whether you understood how it worked or not. You probably have a strong reaction to poison ivy, some people do some people do not. For me I know that my life sucks and is barely livable when I choose to eat gluten.

When you are off the stuff for a few weeks ( and the brain fog starts to lift) just read as much as you can find on the web and you will be able to understand some of how it works. It is complicated but interesting to see how all the chemicals react in us and not in many other people.

For now just stay away from gluten the same way you would stay away from a poison ivy salad with drain cleaner dressing.

Keep it simple!

One more mile

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I had a lot of fatigue and insomnia issues prior to going gluten-free, and things got better but also really weird for about a year after going gluten free. I'm about 2 years in now - still have some issues, but overall things are better and better. I don't pull as many late-nighters now, don't take as many naps. RLS seems gone unless I'm glutened. I also have DH, the skin condition, so it's easy for me to put all my symptoms together and figure out when I've been glutened.

I had sleep attacks for about a year when glutened, but now I don't have them as frequently or as severely. I have some other posts about it.

When I get glutened, my sleep gets dysregulated for a few days. Initially there may be a narc attack, but then later I find myself staying up late at night "buzzing" - but tired.

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I went throught the same thing as you. Once I went gluten free, I was more awake, yet still exhausted. My B12 injection helped ( I was so low they said that I should have been neuro and do not know how I was walking- Nurse said that to me on the phone) But still felt off. It was not until I started my vit D (perscription) That I felt awake when I was supose to and tired when I was suppose to. I still have about one night a week that I am more or less wide awake for 24 hours but the next day I make sure no matter how tired i do not nap. Then I am back to a regular sleep pattern. It is hard. First I just wanted to wake up then I just wanted to sleep. good luck You may want to check your meds that you are taking also if any.

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I also found B12 very helpful, along with magnesium. A B-complex and vitamin D are also good recommendations. Proper neurological function depends on these and other vital nutrients.

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I went throught the same thing as you. Once I went gluten free, I was more awake, yet still exhausted. My B12 injection helped ( I was so low they said that I should have been neuro and do not know how I was walking- Nurse said that to me on the phone) But still felt off. It was not until I started my vit D (perscription) That I felt awake when I was supose to and tired when I was suppose to. I still have about one night a week that I am more or less wide awake for 24 hours but the next day I make sure no matter how tired i do not nap. Then I am back to a regular sleep pattern. It is hard. First I just wanted to wake up then I just wanted to sleep. good luck You may want to check your meds that you are taking also if any.

I am so glad I found this website (with a google search). I'm reading the story of my LIFE! I'm on day 6 de-glutened. The last 48 hours, I've definitely had some of the wired-tiredness. It isn't exactly fatigue, like I've experienced while eating gluten...but certainly feeling tired and unable to slow down enough to sleep or difficulty sitting still to even watch TV. I'll definitely talk to my doctor about it and possible deficiencies, and pump up the vitamins in the meantime.

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I have it too and I can say it's HORRID.....nothing worse than being really tired and unable to sleep :( I have the hot flashes as soon as I can get into bed and then finally fall asleep but wake up at 5 am on the dot and am exhausted and have to go back to sleep almost exactly 2 hours later. Ugh!

The B-12 should help. It takes awhile though. I have other health issues (Lyme) and that obviously contributes BUT I cannot tell you how much going gluten-free helped! It took awhile for all my gluten-related symptoms to resolve but they did. Now, if only I didn't have that pesky other stuff to deal with.

It is incredible how much of an impact the gluten-free diet can make :D

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I used to be like that too. I've been on the gluten-free diet, B-12, and folic acid for over 2 months now and I don't even notice when it's eleven or twelve at night! I've actually had people tell me to go to bed because it was late and I didn't believe them :lol:

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I relate to the buzzing/wired fatigue after being glutened. I slept for 1.5 hours the other night after eating a regular pizza (am meant to be still eating gluten until my biopsy but am going on and off it depending on what work i have on) then was a zombi the next day. The next night i got some sleep, but woke up in a cold sweat twice. Its a if its stimulating/irritating my CNS.

From past experiences this buzzed/wired fatigue will turn into around 3 days where i sleep 12+ hours a night and still feel tired during the day. This is what normally happens.

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My description of this wiredness used to be that it felt like my head was plugged directly into an electrical outlet. Made absolutely no difference how tired I was. Thank goodness I don't get that anymore, unless unintentionally glutened.

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Glad to see this here this am. Helps explain some things to me, that I wasn't sure was linked to celiac disease. Sometimes it's so hard to know what is celiac disease and what may be something else. Sure wish the medical community was further ahead in sorting this out.

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For 20 plus years I've told my Doctors that I was tired, but not sleepy... During that time I had many different blood tests including yearly Lyme test to identify the problem... Test were always negative... Over the last 20 years or so I could only sleep about 6 hours @ night, but could easily dose off for a short nap... Every 2 or 3 months I could sleep 8 or more hours and became ill (sinus infection)... As soon as I started sleeping more then 6 hours, I started seeing my Doc ASAP for antibiotics to fight off the usual sinus infection. When my GP was out of town, I even had one Doctor tell me that I wasn't sick because I was sleeping 8 hours or so... He gave me a lecture that Doctors were over prescribing antibiotics & I could be very sorry someday.. 4 or 5 days latter I required antibiotics for another sinus infection... Long story short, I take an antibiotic daily (dapsone) for DH and now have no problem sleeping 8 hours or more. It's great to function during the day without that constant dose-off feeling that a nap seldom relieved... Life is Great without Gluten....

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I sometimes get this way, but usually milder (say, once in a while a 3 or 4 hr night - can't fall asleep, then wake up after 2 hrs for a while with night sweats, then fall back asleep for a while around 6 or 7 am). But rarely.

In my case it usually seems to come from caffeine or theobromine (found in chocolate, also in carob which is otherwise considered caffeine free), especially if combined with sugar (that seems to be part of the RLS puzzle for me), and sometimes from just plain spicy food (usually chili pepper related). Also anything with MSG or "natural flavors" can have a similar impact.

Not sure if any of that helps, just thought I'd share. In my case, as long as I am gluten-free and caffeine/theobromine free and low sugar (fruit okay, corn/rice/etc okay, just not dessert amounts of processed sugar) and no MSG, I generally can avoid the buzzed-even-if-tired RLS night.

Good luck!

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Thank you all for your replies! I am sleeping much better these days. I do not have the wired / exhaustion problem either. Being gluten-free, dairy-free, mold-free, sugar-free has helped tremendously. My problem with sleep is as soon as I lay down I get night sweat then every 2 hrs or so I awaken same thing. The good news is that I am able to go right back to sleep. My best time block for sleep is 4 a.m.-8 a.m. I believe gluten and dairy/casein were the biggest culprits for me.

Donna

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Hi to all who have posted here. Until Id found this site Id thought its was just me or something that I just done. The tired/buzzed feeling is so common for me that I never really thought anything of it. When I have been glutenised its usually the 2nd week after that the symptons are worst i.e. chronic exhaustion and unable to sleep. I've found that lemon tea helps with this if only as a mental thing than a physical.

I was never really into reading but when the Dan Brown novels came out I got hooked on reading! I also noticed that I couldnt stop reading even when I was tired. Seems like my body and mind get confused as to whether to sleep or stay awake. I've never had a problem staying awake for 36-48hrs str8 even though my body is dying for sleep I can be just too buzzed to go to sleep. Even after a long bout of staying awake I rarely sleep more than 8 hours and take upto 6hrs to fully wake up. This has made me quite moody at times.

And OMG to I hate that cloudly brain feeling. It problem takes me longer to recover from that than anything.

Whilst reading this and typing a reply I've rang my GP and I am going to get a check up as Ive not had on for maybe 3-4 years. I've noticed people saying they take iron supplements AND are dairy free, where do you guys get your calcium? I take calcium supplements as calcium is necessary to break down the iron but correct me if Im wrong about this.

Coincidentally I logged my sleep since last Monday week and I average 5hrs a night :(. This average has to go up soon cos my body just isnt functioning correctly at the moment

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Hi Everybody,

I just wanted to reply to my original post. I am sleeping much better these days. It appears carbs are my enemy. If I am carb free I am able to sleep. If I eat gluten, grain, mold foods, casein, carbs I will not be able to sleep. I experience restless legs also, but not if I remain on this restricted diet. One thing I continue to experience is night sweats. They appear just as I am nodding off, then continue every 3 hours or so therefore I am up usually 2 or 3 times a night but am able to go right back to sleep. I am curious as to what is the cause hormones, low bp or heart-rate ? Any Ideas? I take a vitamin supplement to get my adequate calcium. I have found Many NOW vitamins are yeast,gluten,dairy free. I encourage your Dr's visit make sure to have your B-12 checked! Donna

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Hi Dermotron,

I have been lactose intolerant for, oh say 14 years now. I started taking calcium pills a few years back. I take a cal-mag-zinc pill one day and a cal-mag-D pill the next day, in alteration. I do miss days here and there, but generally try to keep on them. I am in kind of a sweet spot right now as of the last week and a half, been sleeping much better, which is super nice. I am very familiar with the wired sleeplessness feeling though after having that for years. That and the ringing ears.

I found I felt better when I cut out coffee and tea and started taking thyroid supplements. I also cut out all my vitamins for a while and then added them back one at a time after a week or so. I added back one every few days.

Since you are a pure blood I suppose I should call you Mr. Dermatron, sir? :D:) I think Ireland makes the best vampires really.

Hi Ronxnhead,

Thanks for starting this thread. Nice to hear you are getting some Zzz's these days too!

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I'm the same way. I still cannot seem to false asleep until my body literally shuts down and tells me "You're going to fall asleep, find a bed." It has gotten slightly better, I recently just started eating a lot more gluten-free whole grains and I think that will help calm and relax me. I also just removed brown rice from my diet which for some strange reason really causes me physical pain.

I am taking vitamin and mineral supplements, eating pretty healthy, I'm active, I do not understand where this "wired fatigue" as someone so accurately put it as, is coming from. I am thinking maybe a melatonin, tryptophan, or serotonin deficiency?

I really do not want to take hormones (melatonin) to help me fall asleep, but I have heard these work pretty well. Has anyone tried these?

Does anyone else have any theories as to why our bodies are telling us to go to sleep but our minds just will not seem to listen? I am starting to get frustrated here.

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random thought - roxnhead you say carbs are your enemy, and this other thread (in the Post Diagnosis/Treatment category) about yeast overgrowth http://www.celiac.com/gluten-free/index.php?showtopic=62816 - the #2 of 20 symptoms listed by Eric_C as yeast but not gluten related is

"2. Insomnia...just never get tired."

and then

"3. VERY light sleep...I dream but its half way between being awake and asleep"

might be a connection?? for some of us, anyway...

lots of yeast threads on this board if we want to explore them & compare to what we experience...

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Hi to all who have posted here. Until Id found this site Id thought its was just me or something that I just done. The tired/buzzed feeling is so common for me that I never really thought anything of it. When I have been glutenised its usually the 2nd week after that the symptons are worst i.e. chronic exhaustion and unable to sleep. I've found that lemon tea helps with this if only as a mental thing than a physical.

I was never really into reading but when the Dan Brown novels came out I got hooked on reading! I also noticed that I couldnt stop reading even when I was tired. Seems like my body and mind get confused as to whether to sleep or stay awake. I've never had a problem staying awake for 36-48hrs str8 even though my body is dying for sleep I can be just too buzzed to go to sleep. Even after a long bout of staying awake I rarely sleep more than 8 hours and take upto 6hrs to fully wake up. This has made me quite moody at times.

And OMG to I hate that cloudly brain feeling. It problem takes me longer to recover from that than anything.

Whilst reading this and typing a reply I've rang my GP and I am going to get a check up as Ive not had on for maybe 3-4 years. I've noticed people saying they take iron supplements AND are dairy free, where do you guys get your calcium? I take calcium supplements as calcium is necessary to break down the iron but correct me if Im wrong about this.

Coincidentally I logged my sleep since last Monday week and I average 5hrs a night :(. This average has to go up soon cos my body just isnt functioning correctly at the moment

HI,

I have to be honest I hate to say it but we're in the same boat I only sleep Like 4 to 5 hours a nightit's 3:30 am now and my kids will be waking up in like five hours. I ain't even tired either. I remember on week I was up for 5 days straight. A doctor gave me sleeping pills but sometimes they don't even work. I have sma syndrome and I don't even know what to do.

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I have only been gluten-casein free about a week now. (I've started yawning again.) My problem has been that I'm just not tired-in fact I'm wide awake sometimes I only sleep 3 hours a night. The next day of course I'm washed out! Very fatigued! RLS stocking feet-hot legs-it seems as soon as I start to fall asleep I get a hot-flash/nightsweat then I get up to use bathroom, get a drink of water and try again. I can tell if I'm glutened because my feet turn cold-also casein seems to make RLS worse. It is very hard for me to understand how eating something (gluten-casein)can in turn make your body unable to function properly! Almost all of my symptoms are nuero--I'm hoping to get back to work soon, I've been on disability since April with "Profound Fatigue". For those of you with primarily nuero symptoms how long does it take to feel strong again.

I also take Vitamin B-12 injections--and then I get tired---I swear I feel as though I have not been sleepy/tired/drowsy for the longest time. In my efforts to self-diagnose I found the term "wired fatigue" does anyone else feel this? Besides me, and if you have does it go away with the Gluten-free Casein-free diet.

Roxnhead, I am having sleep attacks this week and it is hard to get up in the morning. Today, I slept in a waiting room and I was feeling tired and washed out even after exercising for about an hour. Maybe the exercise was too much? Maybe my sleep wasn't enough but I am not taking any more garlic! It makes me slow and tired.

Can someone tell me if this is how being glutened feels after you have been off gluten? Tired, stiff legs and back, heavy headed, in slow mode, sleepy and yawning.

I make all my food from scratch. Maybe I have to switch to gluten free shampooing, soap etc? How do you all make sure there is no gluten in them? There is usually like over 15 ingredients in shampooing and most have weird names.

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Hey, Babysteps, you put your finger on something here.........last night I had a bowl of chocolate pudding (sugar free/gluten-free) and sleep was impossible. I had already figured out the caffiene thing re: soda, but chocolate??? That's it. I am going to stay away from any chocolate things before bed and see if that helps. By the way....did you notice how many people took a look at this site, must be a lot of non-sleepers out there. Barbara

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I am wired all the time so even when I can't sleep at night, I can't nap during the day. I have been awake now for about 30 hours and feel miserable. I pray for at least a few hours of sleep tonight.

I stay away from caffeine so that isn't the problem. Headaches and back pain don't help but there have been some nights when I do get some sleep in spite of them.

My doctor keeps having me try different supplements (gluten, soy, dairy, egg free) and nothing is doing the trick. I am going to ask him to test me for foods again and also check my level of vitamins and minerals. I am staring into space as I write this since I am so wire/tired.

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    • If someone is doing an elimination diet and not having dairy for a while, would I still be able to eat some cheese since it is low in lactose? Or is best to give up any and all dairy during elimination trials?  Oh,and for cheese, I think it was the Cabot website for hard cheeses that mentions almost all theirs is gluten free. But sounds like most cheeses are.  Still, it can be nice when the company's website mentions it. 
    • Thanks, Ennis.  Do you know, is corn considered one of the top 8 allergens?  I am not sure yet if dairy bothers me, but if it does not, I still need to look for corn starch or corn syrup in ice cream.  Luckily, some Haagen Dazs seems to be corn-free.   Thanks for the links.  
    • As your vitamin d and iron levels are low it suggests celiac disease because if I am not wrong ,your iron levels is low without any reason.  To rule out confusion you should go for celiac gene test. Because if your gene test is positive then you should go for  biopsy of small intestines to confirm the diagnosis about celiac disease.   I also have heaviness,nausea and various other symptoms I am on gluten diet since one year and my gene test is positive for celiac disease and symptoms also suggest.  So, according to my knowledge your all symptoms will get better after you start gluten free diet if you have celiac disease or gluten sensitivity.   Best of luck! 
    • I would avoid those "noodles" starches = gas right now.
      I avoid most stuff like cabbage, broccoli in all but the smallest amounts (1 leaf or 2-4 sprigs) and cook til mush. I found higher density vitamin greens to be best to avoid wasting the room I had for food, stuff like spinach, kale, butter leaf, romaine all have much higher ratios of vitamin A and K then other greens with less sugar, starches, carbs. So you can cram more in there.

      Soups, during flares, I find using meat and herbs to flavor them best, I got a Pots de Herb blend that is nice from The Spice House, tested gluten free for me. But gentle herbs instead of spices...think of Italian and french cuisines. Bit of oregano, basil, rosemary, thyme, etc. Avoiding peppers, spices, and going very limited to no garlic and onions. Funny fact they make bonito flakes (dried fish) like Eden Foods, that makes a good fish flavoring if you boil them into water. Not now but later you can do this with coconut secret aminos,  wakame, or kambu for a asian fish stock for soups.

      I would seriously suggest trying eggs...they have been my savoir for flares, I just cook them soft with almond milk in them in a microwave so they are moist...and soft.

      I treat myself about once a month with either canned tuna, salmon, or millers crab meat (the real stuff), I found the crab easiest to digest and a super strong flavor in soups or with eggs.

      But again step back and say "I will try this for the first week" "Try this the second week" etc. Step by step on how you will try stuff, I know you want to jump to it and try to see what all you can eat but you have to space it and take it every few days for your testing of yourself to be accurate.

      Simple foods, the fewer ingredients the better, give yourself a low single digit number and stick to it so you do not get overwhelmed.
    • I think turkey would be great!  I am sort of thinking you might just want to do a sort of bland diet - as if you were getting over the stomach virus.  So a simple chicken soup with some cooked veggies like carrots and green beans or peas - you can then put it over rice or rice noodles if you want.  I like your idea of staying away from dairy, etc.  You can do that for a few weeks.   Grill the chicken on the grill or cook with a little olive oil in a pan - you can get a nice brown on the outside that adds a lot of flavor.  then put  little water in the pan and boil it and scrape the bottom and dump that in with the rice or veggies that are cooking.  You can throw that chicken in your soup/ rice.  If you cook fresh spinach in things - it can add a lot of spinach flavor.   I think cooked fruits or veggies are usually the easiest to digest.  But really keep it to a few things for a couple of weeks then add then when you are feeling a bit better.
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