[roxnhead]

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.

[Green Eyes]

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

[one more mile]

roxnhead, on Nov 3 2008, 11:35 PM, said:

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

[April in KC]

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.

[I hate gluten!]

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.

[RiceGuy]

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.

[Youdah]

I hate gluten!, on Feb 21 2009, 05:33 PM, said:

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.

[Mtndog]

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

[Angels~Exist]

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

[JohnDory]

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.

[mushroom]

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.

[flourgirl]

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.

[captaincrab55]

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....

[babysteps]

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!

[roxnhead]

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