Hi,
I am new to the site and was wondeing if any of you have suffred
from insomnia. I was dx 3 years ago after going from dr to dr . I think celica has always been with me . I just thought going through this was just the way my body body works.Thanks for taking the time out to read my post.
Willow

Hi,
I'm not a diagnosed celiac, but my son is. I just recently posted in the "Sleep" section about kids sleep habits. My son is 3 y/o and still wakes up several times a night. I don't know if that is because of his celiac, or just because he's a 3 y/o kid, but either way, some of the replies I got made me wonder about insomnia being a heriditary thing, with or with out the celiac. I have been an insomniac nearly all my life, and I have a hard time taking aids to help me sleep, so I just try and deal with it, but I also have symptoms of celiac disease, it's just that my first blood test was neg, and I haven't pressed the matter. My mother also suffers from insoomnia from time to time, and she also has celiac disease symptoms.

I don't know if this is just babble or if it actualy helps, but in any case I wish you luck!

Dear Willow, I am a celiac, have ov course been all my life. Was finally diagnosed March 2002. I experienced such deep sleep before I became completely disabled with celiac that I would stop breathing. Since that time, when it got severe, I have been a chronic insomniac. I don't know if this is part of the disease, but I have personal thoughts that it is. I guess it is like we have heard before, we need more research. Anyway, my opinion for what it is worth. Royann

Hi, I've had Insomnia for many years. I always attributed it to
Thyroid disease and/or menopause. However I think it may
also be another one of those symptoms that seem to vary from
person to persons with celiac disease and wheat allergy. I have been using Ambien
for several months, but I stopped a few weeks ago after tachycardia began
soon after ingesting it. I then looked it up in a reference book which
said it is not gluten-free and it contains wheat starch..

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i'm new to this group AND new to being diagnosed with celiac, though i have had it all my life. how do i know this? when i was two y/o, i had my first barium test because i always complained of tummy aches. i was born in '55, and i'm quite sure the medical world had no idea what celiac was, and the docs told my mother that it must be psychological because i had a new baby brother. (jealousy)
oh brother...my theory is: at two years old, i started eating more 'adult' food, like crackers, bread, cream o' wheat, cookies, etc. and my body freaked out.
the question at hand though was about insomnia. i have had insomnia all my life. i sleep often during the day to make up for the lack of sleep at night. oh, i know it just adds to the vicious circle, but those eye lids just keep falling...
for the most part it's okay for me to have a wacky sleeping pattern, because i'm disabled (not cuz of celiac) and only work part time. i have tried some sleeping aids like restoril which works, but i woke up with a giant headache (which would go away after about 20 min). i tried other sleeping pills which gave me horrible dreams...i hate most sleep pills, but have found something light like xanax, ativan or atirax (sp) makes me sleepy within 15 minutes for xanax, and longer for the others, and yes, i wake up a few times during the night, but without the initial aid, i wouldn't get to sleep at all... i don't know if this helps, i'm just trying to find my way around this place and this dialogue...
having just learned i have celiac, i sure am glad i love rice!

flaxy

I've had lifelong insomnia, but since it was from the first day my parents brought me home from the hospital, I don't see how it could be related to celiac disease since I'd not had any gluten then. (Before you feel too sorry for my parents, know that once I did get to sleep I slept through the night.)

Judy, Thanks for the info about Ambien. I had taken it before diagnosis and wondered why my diagnostician had pulled it. Still have trouble but at least I'm gluten free. I hope. Royann

Hi guys. I have been having problems with my sleep since I was a teenager (now I'm 50+). My severe celiac symptoms started 3 years ago, severe sleep problems - a year later, I was diagnosed with gluten intolerance 5 months ago. From bad experience, I don't trust doctors at all, at least I haven't found any I can trust to. I been taking different pills for depression and I couldn't tolerate any of them. Last fall I went to phychiatrist who prescribed Melatonin, a hormone responsible for sleep. She suggested my body didn't produce enough to help me sleep normally. I found one at Duane Reade Pharmacy, by Natrol, no yeast, wheat, corn, milk, egg, soy, glutens, artificial colors or flavors, added sugar, strach or preservatives, and it works for me. Recently, I bought Sleep Tight Factors by Country Life, Hypoallergenic Vegetarian from a Whole Foods Market, no yeast, corn, wheat, soy, gluten, milk, salt, sugar, starch, preservatives, artificial colors. It's not that good. At least on Melatonin I fall asleep sooner, I wake up only once or twice a night instead of 5 to 6 times, sleep is much deeper, nightmeres rare. Each body reacts for different meds in its own way. Maybe, maybe any of them will work for you. It's just a piece of info.

I'm sure this is obvious but I'll mention these things anyway just for completeness: my insomnia improved when I limited my caffeine intact to 2 drinks before 1 pm and got at least 10 minutes of exercise that day. Also, I limit alcohol consumption to about 1 or 2 glasses of wine per week and never on consecutive nights. Even so, I can usually count on worse sleep when I have the wine (ah, but I like it so much!)

Alexa, thank you, so very much for responding and telling us about Melatonin. My fiance has severe Celiac disease and is in dire need of sleep. I will go to the health food store, today, so, he can try it.

I had learned about Melatonin, some years ago, but, forgot all about it. I'm so excited, I can hardly stand it. Thanks again, Alexa.

Faith

Just a note to say melatonin helped my fiance be able to sleep deeper on the very first night. He still woke up often, but, was able to go back to sleep quickly, whereas, before, he was up a long time.

Of course, he has only taken it for 2 nights, so, I hope he will even do better as time goes on.

Hi!

I had been having problems with my digestive system since last 9 years and have lost almost 10 kilos. My health has also extremely deteriorated. No sleep, no appetite and chronic fatigue.

Although I knew that some foods like Wheat didn't go with my system, I had no idea about Celiac until now! I tried all sorts of medications but in vain. Though I have not conducted any tests now, I'm sure that I have Celiac and I thank god for pointing me in the right direction.

Regarding sleep, since Celiacs are seriously deficient in vital nutrients, many of us might also be deficient of Mganesium. I have read that Magnesium deficiency can hamper lot of vital functions including sleep. Those who have sleep problems can try taking Magnesium suplement or foods rich in Magnesium (instead hormones) and see if sleep improves.

Here's are articles on Magnesium deficiency:
http://www.digitalnaturopath.com/cond/C78033.html
http://www.immunesupport.com/library/showarticle.cfm/id/2892

Best wishes,

Vishal

On the magnesium, I take a good ionic liquid magnesium (Trace Minerals Mega Mag, tastes yukky, but works GREAT) right before bed and it works like a charm, I get sleepy in about 10 minutes and sleep great. The only problem I still have is that with my menstral cycle I still have trouble for about a week even with the mag. but it is sooooo much better even with that.

I tried Melatonin and would only sleep 4 hours and then wake and it made me CRANKY. For some people Ornithine alone, taken at bedtime will help as well. You start with one capsule (I use NOW brand) on an empty tummy right when you lay down for sleep, if that doesn't work keep adding a capsule at a time until it does. I used to have to take about 8 or so but it worked well, but the magnesium works far better for me, and it is helping straighten out my hormones in general. I have a long way to go, but getting sleep sure helps!

I'm off to take my magnesium and hit the hay...good night all!

Me too! I was just diagnosed about a month ago, but for the past year and a half while I have been very sick I have not been able to sleep!! I take tylenol pm every night and wake up so many times!! Hopefully someone can help....

Try Imovane(sleeping pill). I just take 1/3 of a pill. It gets me sleeping. I tried Melatonin and it only works sometimes. A glass of wine and melatonin worked though. I would think Tylennol is a bad choice for longer because could it not damage your organs?

I am VERY new at this message board stuff ... in answer to the question about not being able to sleep ... I too have had that problem for years. I have been in the testing process to determine if I have celiac disease. The blood work came back as very high, but the biopsies are not confirming that diagnosis. This last "episode" started in the Summer of 2004 and we are still looking to put a name to it. I have been gluten free for 3 weeks. At Thanksgiving (2004 when I had the biopsies) the doctor told me to go gluten-free and I tried, just had to educate myself in all that stuff is in! I think I could almost put up with all the stomach and diarrhea problems if I could just get enough sleep and not be so fatigued. Over the years I have tried the over the counter sleep aids, to Aroma Therapeutix, to prescriptions!
It is nice to have a sounding board to get more ideas. Thanks for any help, suggestions.
Laura

judy04 - Thanx for the info about AMBIEN. My thyroid doc game me a Rx for it and I was unable to get it filled at $130.00 for 30 pill. The sticker shock got to me (Ooch! I have no health insurance). I went back and she game me somethng else the other day (I wish I wrote it down so I could share it with the group) it had dairy in it. I returned it and never took it either.

I have been taking LORAZEPAM, when I get stressed, my heart races, can't sleep or when I have one of my seizures. It does help take the edge off. But my face, eyes, and gands get puffy when I take them for a day or so following. I'm a real life DIVA and I am super VAIN. One of my girlfriends mentioned the other day how I had puffy eyes and circles. I had been taking the LORAZEPAN the days prior to her comment. I don't know what's in them that is causing it, I'll look it up. Does anyone else here take it and have any reaction to it?

Regarding taking magnesium and the thyorid medication I just started taking... the doc told me not to take magnesium. I have a feeling she is misleading me. How should I take it?

I have insomia too. I was also diagnosed 3 years ago. I use Valarian to help get to sleep

Melatonin! It is not for Celiacs! we tried it and it made me sick! Also I my doctor informed me that it was not supposed to be taken by celiacs.

Did the melatonin you were taking have gluten in it? I have taken melatonin and have had no problems with it.

arg I have insomnia almost every night when I eat wheat
flour! Which is weird because I have been diagosed at birth and I used to just get cramps when I was little but now it doesn't hurt when I eat wheat flour I just can't sleep. :/ But has any one else heard any thing about that new pill doctors said the developing to make it so you can eat gluten stuff for a while after taking it?

I have celiac disease and so do both of my children. My daughter, who is 21 now, has had problems sleeping for years. I suggested melatonin and it seems to work well for her although it hasn't alleviated the problem altogether.

Yes, Namnammo, I've heard of that. Oddly enough, my step mother-in-law has celiac disease. She is acquainted with the researcher who really brought celiac disease to light in this country. He said they are working on such a pill and making headway. It won't be ready soon, but should be out within 10 years. I'm hoping it'll be sooner.

Hey, guess what? I have insomnia too. It got worse when I started my gluten-free diet, but I'm just going through gluten withdrawal... Right now its like 2 am, and i'll probably be up for a few more hours... Nice to know that I'm not the only one here with it.

hello
my father was suffering from a similar problem of sleeping disorder
he was afraid to take any medicines for inducing sleep
however the doctor told him to take Serenite
as it was herbal he didnt have any side effects as such

I've had insomnia since kindergarten. When I was a child, I would go to bed with 12 hours in which to sleep, then I would try all kinds of weird techniques to sleep, such as getting in uncomfortable positions, flipping my pillow onto the other side because it was cooler that way, or lying on the opposite end of the bed. For some reason, they would sometimes work, but the most sleep I could ever expect to get in a night was six hours. If I ever had to spend the night anywhere but my own bed, I wouldn't sleep the entire time (including on week-long family vacations and at slumber parties and summer camps).

When I had untreated hypothyroidism, I would fall asleep at any moment. Every time I would watch a movie or try to study for a test, I would fall directly asleep. But of course, untreated hypothyroid sleep isn't restful. I could sleep for 14 hours and still wake up feeling like I had never slept. When I got on just a little thyroid medication (not enough because I still had most of the symptoms), I was back to my normal insomnia. It didn't really matter because I had only four hours or less every night to sleep anyway (or, none at all) when I was in university because I couldn't concentrate to study and had to write down every word the teachers said to learn (after the lecture to retain the information). Studying for a test meant typing all of the info for two days straight without sleep. For awhile, I was taking Trazodone and had the best sleep of my life. Eventually, it stopped working, but it did give me improved sleep for a few years.

Now, I handle it by pulling all-nighters until I am exhausted enough to sleep. Sometimes that means staying up for a week without sleep. I am on the diet, but I still have severe insomnia. It could be caused by anxiety because if I can get my husband to stroke my arm for a bit, I will calm down and will go to sleep immediately. I hope this will be resolved one day.

I take Ambien for insomnia. Because it is habit forming, I vary the amount and the days I take it. On the days I don't take it, I use Sleep Tight Factors which are gluten-free. Someone on this thread said Ambien is not gluten free. I just checked a medical list I keep under favorites and it is listed as being gluten-free. I do not take any generic as they many times have gluten in them. Maybe she is taking a generic for Ambien. I certainly hope that my gluten-free prescription list is accurate. Armetta

I have had problems sleeping for a long time. I've been taking ambien for awhile and it seems to help. However, the wierd thing is that since I've been gluten-free...even with ambien I can seem to fall asleep, like right now. I took it at 10:30 pm and it is now 1:42am...not sleepy and I have to be up in 4 hours... Is this something that happens when you are gluten-free? Also, I just started taking a "under the tongue" B-Complex in the mornings....can this be causing me to not sleep? I need my "beauty sleep"

Hi Kathleen,

I take a sub-lingual B complex with B-12 every morning. It has not affected my evening sleep. With the Ambien, I noticed that I have to take it just before I climb under the covers. I also take a Excedrin PM with the Ambien, otherwise my mind does not shut down and I can lay there until the wee hours of morning. And it does not matter how tired I get - I will just keep the old mind going (Not that there is much a mind left since I got so ill with this LOL). So, I take both pills and sometimes two Ambien's immediately before I go to bed. My husband and granddaughter have learned to not disturb me after I take the pills. If anyone does before I have fallen asleep then I am awake until morning. If I get woken up several hours after I have been asleep, I can still go back to sleep. It is real weird. Before I went gluten-free, I would have some episodes every month with insomnia, but nothing like the insomnia that I have now. Hope you find the right combo of whatever that helps you get the rest that you need.

Armetta

I take Sonata, which is not habit forming. I only started having insomnia when my celiac disease symtoms started back when I was diagnosed with "stress". Halfway through my first week on gluten-free diet I started sleeping on my own.
This weekend I had to take one because my insomnia was back ( I got glutened friday and felt crappy all weekend.) Sofar I've been on this three weeks and got accidentally glutened once every week. Here's hoping it gets better. I like sleeping on my own.
Elonwy

Thanks Armetta and Elonwy...I am hoping that find the right combo also. This no sleep business is no good, especially when I have to go to work the next day and try to be alert!!! Armetta, do you think the B-Complex is helping with you energy level? I kind of feel it is...but then sometime I think it is just the simple power of suggestion.

I wish the power of suggestion would help my energy level. A friend is taking the shots and noticed a big improvement. I took them for many months and noticed nothing. Am now on the liquid sub-lingual and still don't notice any improvement. I take one High Energy Ensure in the morning and sometimes two Frappachinos - just to be able to get the minimum done each day. The low energy is the hardest for me to accept. I do not take any caffeine after 1:00 pm because of the insomnia. My husband had to go to the doctor today (we have the same doctor) and he wrote an order for me to have my vitamins and minerals checked. He said to my husband, "where does she find this stuff" and my husband told him "you told her to use the internet". He laughed and said "yes, she is my researcher on this disease" LOL. As a matter of fact, I print everything out that I think he, his PA and his head nurse need to know. He, personally does not have time to study on all this as he really should have a closed practice as he has way too many patients. So, his PA is reading up on everything I give them. He now has more then 50 celiac disease patients since he diagnosed me. So, we will see what this round of tests show. If nothing, then I have to accept that after a year and a half after my diagnosis, then this might just be where I end up at. I do not find that idea a good thing to deal with.

Armetta

I have never slept well. My infant inability to fall asleep is a family legend. But before DX, I would be sick as a dog and unable to sleep. A friend suggested I might have a Circadian rhythm disorder (Circadian Ryhthm is your body's sleep/ wake cycle) These are very much genetic and as we have a family hx of weird sleep patterns, I tried the cure... a sun lamp from Appollo Health. It helped quite a bit.

But, I discovered that hard way that gluten gives me BAD insomnia. (Actually, it was the insomnia and crazy autism symptoms after a day of High gluten that helped me figure out my gluten intolerance.) Now, if I get even a little bit of gluten I have 8-12 hours of insomnia after I eat. Sometimes I can go to sleep right after dinner, but I will wake up buzzing. It seems that higher doses create longer periods of insomnia. You might want to check for hidden gluten in your diet. I am also starting to suspect that too much MSG mighht be an insomnia trigger for me.
BTW, I still use the light box some, but I need it far less now that I am off gluten.

I had been taking Magnesium before diagnosis, that helps with the sleep and with pulling toxins out of the body. I have also tried Calcium. But when I get glutened, I pretty much have to take a sleep aid, My doc has me on Sonata. Sonata is good for this because it only lasts 3-4 hours so I can take it in the middle of the night.

Hello from a newbie!
Hi out there. I wanted to introduce myself to everyone. I’ve been searching the web for info about insomnia and found this board. I’ve never thought about joining a board before, but after reading through some posts, I’m happy I did. I just want to say thanks to everyone for the support you offer here.

I've been taking melatonin 1 mg every night because I read that it helps with sleep problems and I just read here that it's not recommended for celiacs. I searched and Wikipedia said the same thing! Cripe. I was getting benefits from it! I also use the Go Light from Apollo for SAD and that helps also.

Hi Willow,

I am new to the whole forum thing so I hope I am doing this right.

I too have recently been diagnosed with insomnia which is r/t celiac disease and Hashimoto's autoimmune disease and I have both.
All my doc told me was the norm-
1. no caffeine after 2-3PM
2. Do nothing an hour before sleep
3. Exercise
4. ...

I have tried and it isn't working. I asked for an RX and he refused. Well, he have me 10 days worth. So I am only using them when absolutely necessary.

My mum told me that I would drive her mad as a child because I wouldn't sleep. I still have problems now but its not as bad as I have been diagnosed for the past 3 years.

I used to sleep great but since I've passed 45, I've been waking more and more often during the
night. I don't feel rested and I'm tired all the time. I went to a web site www.innertalk.com and I ordered a subliminal tape Sleep Soundly. The first night I listened to the muisc for 30 mins before bed time and I fell asleep fast and woke only twice, compared to once an hour all night long! I feel much more rested and I sleep much better now.

I think this works better than the melatonin because I would feel groggy all day long from the melatonin (a side effect), and of course it's not recommended for people with auto immune disease. Subliminal tapes have no side effects!

Of course you need to be hypnotically suggestable... Thought it might help.

[font="Impact"][/font][size="2"][/size][color="#000080"][/color]Hi, I'm new to the celiac forum, but old to being a celiac,(as opposed to being a brainiac as my husband jokes,0. I've had insomnia for the last 20yrs!!! Is there a cure? It is just a way of life now days for me...it is so good to be able to talk to others with the same symptoms. I just get eye rolls and changed subject when I mention anything around my family and friends...thanks for being there. Subhangi

Hi I have been diagnosed with coeliac disease about a year ago , and my symptoms were comepletely the opposite i couldnt stay awake.. as soon as i sat i fell asleep....
Very dibilatating but as soon as i went on the gluten free diet my sleepiness went away.. so not sure about the insomnia part of it being in relation to coeliac ..

I'm recently diagnosed. I have always had trouble with sleep, ever since I was a little kid. I started sleeping more and more earlier this year, and I had a number of other problems. I never had the core symptoms (diarrhea, etc.) in any specific concentration, but i had many of the peripheral symptoms (fatigue, malaise, endometriosis, depression, weight fluctuations). I took the blood test, but tested negative, but I decided to try out the diet anyway to see if I could maybe be sensitive and see if it helped my endometriosis symptoms, and it worked. Although, the fatigue that kept me in bed earlier this year is gone, and I'm an insomniac once again. I started forcing myself out of bed at 5:30am to go to the gym and work out for an hour... but I still can't get myself to fall asleep before midnight! Anyone else find that they have so much new energy on the diet that they can't get enough sleep?

I had this problem earlier this year after diagnosis. I still have trouble going to sleep earlier, it seems I just can't relax (as evidenced by this post at 11:48pm). I still get fatigued during the day, though. It is getting better over time, I think.

I HIGHLY recommend D3 supplementation for insomnia. D deficiency is a common result of gluten intolerance, and supplemental D has done wonders for my sleep problems. I went from sleeping 1 or 2 hours a night to sleeping for 3 or 4 hours by adding 5-HTP. But after I got serious about the gluten issues, I added 2000 IU of D3 (Carlson's gel capsule, not a dry tablet--that's important) to my day and now I sleep a full 6.5-7 hours straight. Every night, night after night!! I am sooooo happy!!

The only time I have problems sleeping is during the work week....I am not worried about anything but I could stay up all hours, the bad thing is I get frustrated and worked up about it and that doesn't help.