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Insomnia
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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.

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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 <_<

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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... :angry: 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" :lol:

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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 B)

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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

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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.

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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 B)

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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.

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Hello from a newbie!

Hi out there. I wanted to introduce myself to everyone. I

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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! :angry: I also use the Go Light from Apollo for SAD and that helps also.

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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.

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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.

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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.

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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 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.

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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.

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

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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 .. ;)

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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?

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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.

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B) 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!! :D
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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.

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I have now been awake for over 40 hours. I feel exhausted but not sleepy. I sure hope for sleep tonight!

I want to warn others about Ambien CR.

I took Ambien a few years ago and got four hours of sleep from it. Felt lousy but four hours were better than nothing. Recently, my doctor prescribed 12.5 mg. Ambien CR. I held off using it until I went through a spell like I am going through now. I wasn't getting much more than an hour of sleep a night. With the Ambient CR, I got four hours of sleep. The control release didn't kick in to help me sleep. What happened is that I got completely agitated and suicidal. I took it four nights in a row because four hours of sleep were more than I was getting without it. Every day, I got worse and worse and I finally wised up and quit taking it.

Not sleeping at all is better than what Ambien CR did to me. I am still seeking out ways to sleep. Natural sleep aids that I've tried either don't do anything or make me very anxious. My system is wearing out because years I could take most anything.

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After 40 hours of no sleep, I slept straight through for over seven hours last night. I took 6 mg. melatonin, 200 mg. L-Theanine and 15 mg. mirtazapine (prescription). The interesting thing is that I can take the same thing other nights and not sleep at all.

I checked the pharmacist about mirtazapine. It doesn't contain wheat.

I sure feel better after sleeping. Still have a headache but it isn't as bad as it has been for the past five days.

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Try Melatonin, I don't know if anyone else has suggested this, I don't feel like going through all of these answers. The doctor told me about Melatonin and it works.

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