Can't Stay Awake

[Guest aramgard]

I'm also a big fan of San-J tamari sauce and use it in everything. I like the flavor much better that La Choy. Shirley

[jaimek]

Where can you find that San-J Tamari sauce? I am not a big fan of La Choy either but I love soy sauce. Does the tamari taste like soy sauce?

[Guest ddempse2]

I AM CURED AND CAN HELP!. I am 20 and I have gone through exactly what you described and am now cured so hopefully this relates to you and I can help. I am assuming you are a celiac. Fatigue comes after prolonged damage to the intestines from all the gluten you have consumed over the years. They cannot properly digest the proper vitamins you need to feel healthy. The most important are Iron, Calcium, Magnesium and Vitamin B. These are the supplements I take. BUT THIS IS NOT ENOUGH. What should make you feel better is to take enzymes with every meal, this helps break down the food so it can be absorbed. The enzyme I take is by "UDO's Choice" called "Ultimate Digestive Enzyme Blend" it has ten essential enzymes to cover all the basis (and its gluten free). I also use a Lactase Enzyme if I eat a bowl of gluten free cereal or Ice Cream (like Breyers All Natural Ice Cream -all flavours). Lactase needs to be individual (I take 9000 units - says on bottle) because there is not enough in enzyme blends. The reason lactase is special is because the natural lactase enzymes in your body are located on the edge of the villi in you intestines and have by far sustained the most damage. Also eat foods that your body can easily break down such as plain rice. You wont have to do this forever, but probably for at least a few months, until your intestines heal. Try taking a Probiotic with L. acidophilus to speed up the process, it helps heal the intestines faster. Oh yeah, you can find all this stuff at the health store. I hope this helps you, at least it's worth a try. If there any questions let me know, ddempse2@uwo.ca.

[Meenucat]

I also am a walking zombie at times - it hits me out of nowhere and I am so tired that I can barely function - It is also very hard for me to get out of bed on most mornings...I know how you feel

By the way - I have a B12 Deficiency - Have you been tested for this yet?

[YankeeDB]

Ker, to get research done, your best bet is to find a pulmonologist (who deals with narcolepsy) and a gastroenterologist (who deals with celiac disease) who is well-established in getting research grants! This combination doesn't sound too likely, but you never know. Perhaps a large university research center would have two specialists willing to collaborate on a grant. It would most likely be an NIH grant.

I'd suggest doing some online research to see what studies have been done on narcolepsy and gastrointestinal illnesses. Another approach is to look for studies on the connection between celiac disease and neurological disorders. You might find researchers interested in this problem and you could contact their offices by writing a summary of what you have discovered in your survey of the literature and urge them to investigate.

It's kind of a long shot but this way you might just catch the interest of someone willing to do a pilot study (a smaller study, less costly, less rigorous than a full-scale study to determine if a big study might be worthwhile).

[darlindeb25]

Hey--this is amazing--I just decided to check into some different areas and found this on insomnia. I never thought about it being connected to celiacs. I too take a daily vitamin and have been gluten free now for almost 3 years. I wake everyday at 5 am for the day, but I do not sleep well most nights--I call them the clock watching nights . Truthfully, I thought maybe the sleeplessness was caused by stress. I read where one person said that xanex helped them sleep. I dont know about that. I was on xanex for years and was taking 40mg just before finding out about celiacs. I took it for panic attacks and the like. After becoming gluten free I took myself off of xanex and have been pretty much panic free since. I found it hard to travel 20 miles and now I have gone 800 miles to Long Island NY 4 times. Sometimes we all want to say, "Why me?" We just have to keep trying anything to help. Good luck to us all!!!!!!!!!!!!!

[AntiGluten]

I haven't checked this site in awhile but i'm glad, in a way, to see that I'm not the only person suffering from fatigue and excessive sleepiness. I hope this thread is helping people as much as it has me. I PMed a few of you with extra questions concerning your replies. I ordered the Medipro powder that Emily suggested yesterday. Hopefully it'll get here soon so I can start using that to see if it helps. I also cut soy out of my diet, mainly chocolate and vegetable oil, about 4 days ago and have actually noticed a little difference, I'm 90% sure I react to soy. My friend even told me yesterday that I've seemed more awake the past couple of days than usual. It always promising when someone else notices your improvement.

I'm going to be seeing my doctor within the next week and talk to him about trying adderal or provigil. Has anyone here used either of these and if so has it helped? I know adderal has worked for a few people but no one has mentioned provigil. Supposedly it helps with excessive sleepiness quite a bit. Thanks everyone for replying with suggestions and encouragment. I know it's helped me and others a whole lot.

[AntiGluten]

Well my mom and I got to go see the doctor today because there was a cancelation. So we go and he fills out a subscription for provigil. Then when we get home my mom looks it up and finds out that it's not gluten free. Why in the hell do these drug companies put gluten in there products?? If they were smart they'd know that there is a large group of the population with symptoms that their pill claims to solve that can't ingest gluten. Oh well, their loss. Went all the way there for nothing... so now I guess we'll try adderall.

[YankeeDB]

For what it's worth, I tried provigil and found it made me agitated and unable to sleep but no less fatigued than before.

[Guest momof3]

Dear Antigluten: I too  usually have to take a nap to make it through the day. I also have developed a sleeping disorder, severe rapid leg movement, that prevents me from sleeping at night without medication.  I do have days when I can get by without sleeping, but they are rare.  In fact, I am currently on disability because it is impossible for me to work with this constant and chronic fatigue.  I have talked to other celiacs that have the same problem, and there doesn't seem to be a definitive answer yet from the medical field.  My GI feels it is related to the Celiac disease, and my endochronologist reminded me that Celiac disease has system wide effects.  I have found that I really have to pace myself.  I drove my grandson home ( at two hour trip) and then slept for  3 days.  I have good luck with reducing my schedule, planning for a nap, and realizing that after a busy time (a trip,  visitors, etc) I will need extra sleep.  Hang in there.  I believe there is a lot they don't know yet.  Sylvia

I FOUND OUT I HAVE celiac disease IN JULY AFTER A SCOPE WAS PERFORMED. I THOUGHT O.K., STAY ON THE DIET, AND DAY TIME SLEEPINESS WILL BE NO MORE. "BOY" WAS I WRONG! I HAVE BEEN HAVING SYMTOMS OF FATIUGE SINCE FEB & MARCH.

I ALSO TAKE MEDS FOR RESTLESS LEG SYNDROME. THIS MEDS CAN CAUSE FATIUGE AS WELL , SO celiac disease WAS BEING COVERED UP. I'VE HAD RLS FOR THE PAST 7 YEARS. IT'S UNBEARABLE TO RIDE FOR A PERIOD AT A TIME IN A CAR, AT MEETINGS, OR ANY WHERE YOU CAN'T MOVE ABOUT. THIS BECOMES A PROBLEM AT NIGHT WHEN YOU TRY TO LYE DOWN. HAS SOON AS YOU GET COMFY, A URGE TO MOVE YOUR LEGS MAKES YOU GET UP. I WOULD BE IN TEARS JUST WISHING I COULD SLEEP. THE MEDS THAT ARE PRESCRIBED IS PARKINSONS MEDS. (MIRAPEX, REQUIP, ETC) THEY FOUND ANEMIA CAN PLAY A FACTOR IN RLS. THAT TAKES ME BACK TO THE FATIUGE ISSUE. THE DOCTOR TRYED ME ON IV IRON THERAPY (INFED.) I HAD A REACTION TO THIS MED SO MONDAY I WILL HAVE SOMETHING ELSE IN ITS PLACE. I WANT TO GET BACK TO WORK. I'VE BEEN OFF SINCE MARCH. I STARTED HAVING SEIZURE LIKE SPELLS(NON EPI). I NOW BATTLE EXTREME WEAKNESS TO WHERE I FEEL MYSELF GOING INTO A DAZZY LIKE FEELING, AND I HAVE HAD TO SIT ON THE FLOOR AT THE SUPERMARKET AND CALL MY SIS TO COME A GET ME BECAUSE I COULD NOT MAKE IT OUT OF THE STORE. SORRY TO GO ON AND ON!! LET ME KNOW IF ANY ONE ELSE HAS HAD ANYTHING SIMULAR.

MOMOF3

[maryseas]

Say, I'm new here and not sure I have celiac disease, but am going to try a gluten-free diet for a while to see if my symptoms ease until I can get into my doc to be tested. They think I have Ataxia, but I've read this can be caused by gluten with some cases. Since no one knows for sure yet exactly why I stagger around the way I do, I've been on my own to try and sort out other possibilities (docs seem to be too busy for much research).

one of the biggest complaints I had all last year was that I needed 1-2 naps a day just to keep going. It's absolutely horrible. Just by chance I discovered that this was not part of whater the disease is that I have. I've always needed a lot of sleep--all my life, but 12 hours a day with 2 naps is ridiculous. In exploring dental reasons for my ataxia (mercury poisoning) I ended up seeing 3 different dentists who each took full mouth x-rays. Only the last dentist spotted a "reabsorbsion" in one tooth needing a root canal! I had gone in to dentist #1 to complain about it and she gave me sensodine toothpaste and sent me home. Told me she couldn't see anything on the x-ray that would explain the sensitivity in my tooth. 24hours after the infection was cleaned out, voila--no more naps during the day. I have my energy back, but still sleep 9-10 hrs at night. I had so much blood work prior to this that I can hardly believe that this infection did not show up somewhere. Anyway, may not be any one else's solution, but wanted to suggest that looking elsewhere besides the disease may be worth while.

[red345]

"I first noticed my excessive sleepiness when I was in Japan for a two week exchange program with my school. I was dozing off on trains and in the classroom."

Interesting, though I'm sure the sleepiness you had in Japan was related to the different time schedule you were on. If these come and go over the course of an hour or two, if they begin and end suddenly, you may want to consider a Cortisol test (Insist on at least four draws, if possible-the AM reading is not enough with today's lifestyle).

I am now under the belief that a Mastocytosis-like reaction is taking place among celiacs, if some of this villi damage isn't Mastocytosis itself. There is a virus that is commonly associated with Masto called the HTLV-1 virus. It's a big problem within the Asian population. I believe that it functions quite like HIV. It is an STD, but I just can't seem to remember whether or not it was also a live virus, or not. I believe it was just an STD, come to think of it, so you wouldn't have anything to worry about there.

The advise those have offered here in reference to glucose and thyroid (TSH) testing is good, too. If not already done, try to obtain Immunoglobulin (Antibody) testing, and/or a blood culture. An ANA wouldn't hurt, either. I don't believe in Chronic Fatigue. It is only a title assigned to people by doctors that are unwilling to outrule everything else, in my opinion.

[Deby]

I found this thread quite interesting. I feel like a walking zombie most of the time and have even had times where I had to fight to stay awake while driving. I thought it was just me. I had celiac for 15 years before going gluten-free. I've been gluten-free for four years now and I'm doubting that my symptoms will ever completely resolve. Actually it's a little depressing as I read posts to discover how much undiagnosed celiac disease has taken from my health.

I have that restless leg (another thing I thought was just me) I notice it myself that my legs get 'twitchy' but I asked my husband if I wake him up with leg movements, and he said, yes, all the time. It's not just my legs either, my upper arms feel this way sometimes too.

With all this said, I have to add that I have found that the more sleep I take, the more I seem to need. I actually feel better on about 7 hours of sleep and a quick 20 minute nap. If I let myself sleep 9 or more hours, I just seem to feel dead and want to have a two hour nap in the middle of the day, sometimes two two hour naps!

No matter what I do, though, I'm always tired. I've tried multi vitamins, but they didn't do anything. After reading this thread, I'm going to try a liquid form. As for Amino acids, I never thought of adding those, but it makes sense. My question is, would the aminos do good if my villi are still damaged (I'm sure they are after 15 years) Is there any way a person can know the condition of her villi? I never had a biopsy since my antibody came up negative. Though I am 100% positive I have celiac disease.

Does anyone know of a good liquid vitamin that doesn't cost a fortune?

[phakephur]

As maryseas points out, it could be an infection or some systemic problem unrelated to celiac disease.

At the last office job I had I could barely keep my eyes open. I had to slump down in my high backed chair with my hand on the mouse to catch a nap and hope nobody noticed. I thought it was the adjustment to the new job which was more demanding than my previous one. But the fatigue never went away. In fact it got worse. After 2 years they started a renovation in the building and the fatigue worsened and I became extremely sensitive to chemical odors. I finally had to leave that job because I couldn't tolerate the air in the building.

Now several years later after a regimen of liver cleanses and adopting the gluten-free diet, my sensitivity to chemicals is greatly reduced. However, when I go to a shopping mall or some other place where the air is not good, I become *profoundly* sleepy as I did at the office. It's like going under water. If you notice that you come out of a shoe store way more tired than when you went in, think about poor air quality as a contributor to fatigue.

Cheers.

Sarah

[Celestine Insights]

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HI, I am a newbie to the forumn, but 1 of 3 family members dealing with celiac disease for 6 years now. Before findning out any of us had celiac disease, I was diagnosed With Narclepsy and Insomnia. Try explaing to anyone how tired you are... it is worse than not getting to eat normal spaghetti. However, things did get a little better on the diet, and the sleepiness now is caused by total stress, or getting dehydrated. I feel a lot more awake if I sip water all day long.

But I wanted to also add that the DH rash, amongst the dozens of other skin and candida yeast things... I FINALLY would the cure! Neem oil. Found it online, then at my local health food store. It has healed chicken pox-looking sores that I have had since I was 17 - I am now 36. I also use some stuff called Scars no More, and Yeast no more. Litlle expensive bottles, but highly concentraited, and my , and my daughter's acne is now gone, in only 2 weeks. using these three items. I have never had skin look this good. any redness, swelling, itching, thickening, etc, all gone. Good luck!

Christie

[cmarie32]

It was mentioned earlier haw odd it was that not many people are mentioning Provigil. I will.

I had been on Provigil (aka Modafinil, Alertec) but a study version which has removed a part of the drug, now Modafinil-R, minimizing the nausea, headache and restlessness side effects.

Appearing to aid me immediately, only so slightly but which is better than none, I was pleased and continued for over a year.

Passing the one year mark my poor memory became poor and confused, my fatigue became fatigue and clumsiness, my over excessive sleep became interrupted and nightmares became terrors. My irritability turned into anger and my depression turned into a complete lapse into sadness for no known (to me) reason. I function best withdrawn from society and the longer I am away, the harder it seems it'll be to return.

Be aware that although Ritalin had a better effect on my focus and attention (for obvious reasons) but caused alot of other mind noises (being effected opposite to one on Ritalin for ADHD) but Ritalin is VERY difficult to come off of. The first couple weeks are tough... pack alot of bandaids and use plastic, not glass drinking cups.

I am seriously researching vitamin intake and ability to absorb it. I thank you all for sharing your stories, experiences and information becuase you have given me more terms to research and ideas to present to my totally-at-a-loss doctor.

Sincerely,

Christa, desperate to be drug free and energetic.

[musikate]

I want you to know you're not alone. I also have narcolepsy and celiac disease. When my pain and diarrhea are bad, I will sleep through the entire day. Sometimes I have to drive in the morning, and I am terrified I will fall asleep. I take Provigil, but it hasn't helped me much. Coffee makes it worse because it exacerbates the diarrhea. I just hope that after a longer period of time gluten-free, these symptoms will abate. Maybe that will be the case for you, too.

[kcny]

I too have sleep problems, but never thought it related to the gluten intollerance. I have mild sleep apnea, caused by weight gain, caused by not getting enough sleep. Can anyone say "viscous circle"?? I don't have the leg movement disorder, but I do have a form of PLMS - Periodic Leg Movement Syndrome. The difference for me is that it is my arms that move and twitch. I've had to sleep studies done and I take Mirapex before bed. Mirapex is Dopamine. Dopamine is something that the brain produces that slows down communication between the brain and the nervous system. I take a VERY low dose, but it is enough to stop the twitching. Now I'm waiting to see if my insurance company will cover an oral device to help stop the sleep apnea.

Is there a "big sigh" smiley icon??

[Ringo454447]

This question is for AntiGluten:

Dear antiGluten,

What book do you use that tells you which drugs are gluten free? I'm also a celiac, and I'm very highly reactive to many drugs & foods.

Thank you!

[Mandy]

Help.  I can't seem to stay awake between the hours of 8:00 am and 10:00 am every single day. I have tried to adjust my sleep patterns and still same outcome, which is struggling to keep my eyes open during those hours.  Here is a list of vitamins and prescriptions I take on a daily basis:  woman's vitamins, ginkgo biloba, Korean ginseng, B Complex, Ashwangandha, Fiber pills, green tea coffee extract, blood pressure pill, zoloft for depression and adderall for adhd.  The last 2 prescriptions I listed were prescribed by doctor to improve my excessive drowsiness yet still no difference.  I am in the accounting department in my career and it is really hard for me to manage my 8-5 work schedule.  Once I get through the severe tiredness I seem to be ok.  My question is why does it affect my every day and at the same time everyday.  I don't snore and can't afford to get the sleep study done so I am trying to find a cure naturally.  I also have been trying essential oils at night to get better sleep but no matter how many hours I sleep I still have the problems.   Any and all suggestions, ideas, diet changes will be greatly appreciated.  I seen in a previous message someone commented about holistic chiropractor and certain hours , could you please give more info.