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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Can Fall Asleep, But Can't Stay Asleep
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16 posts in this topic

I've always had difficulty falling and staying asleep. I'm falling asleep a bit easier since starting the diet (finally able to exercise during the day which is probably making me more tired), but I wake up throughout the night.

Does this happen to anybody else? Any suggestions for what I can do?

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That is a difficult problem. I have had chronic insomnia for years and years so totally empathize with you. Many nights I get less than 3 hours' sleep; sometimes I literally do not fall asleep at all so feel quite useless the next day. However, mine is often pain related - it is nearly impossible to get into a good position as I cannot lie on my stomach or back. I often must get up and walk around at night because it also hurts to lie on both sides (see my signature). So, I have found NO sleep aids to help except for Zopiclone that I take when desperate. I have been on it for about 12 years. I am also on muscle relaxants which do nothing for the pain but help my body to relax so my muscles get rest. They also help me to stay asleep a little.

As this has been happening for awhile perhaps it may be worth asking your doctor for a prescription sleep aid. I didn't like doing that but it is necessary for me to cope during the day. I'm sure you've heard the usual rules of sleeping like having a dark cool room, not exerecising after 6 PM and so on so I won't mention any more here.

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Ditto here. Chronic pain and gluten made me a raging insomniac since the 90's :blink: ...even had a sleep study done. No good REM sleep...geesh, I could have told them that! :lol:

I had a 3- year run(2008-2010)of maybe 2-4 hours tops every night...I was a wired-for-sound nutcase from lack of sleep and gluten head.Some nights, I just walked round and round my hours in frustrated tears. My body throbbing in pain...Meanwhile, dear hubby snoring away..AACK!

Gluten free? big improvement! :)

Some nights, maybe 5 or 6 now. ( The chronic pain is another issue. I am working on that in PT.)

What is keeping you awake? Do you have to get up to pee? Is your brain racing?

I found soothing tapes helped. I tried every drug available--once or twice--then gave up. They just made the GI situation worse or gave me horrible nightmares.

Give it some time--many people on here told me their sleep improved over time--as the gluten effect lessened.

Try a hot bath before bed? Chamomile tea?

Good luck, hon--I know how frustrating--and exhausting!-- it can be.

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I used to have that problem but I take 3 mg of melatonin (in a gluten free tablet) now and I fall asleep faster and stay asleep all night. Over the counter in the vitamin aisle. If you decide to try it,just make sure it's gluten free (will say on the bottle). Just one an hour before bedtime should do the trick.

A special center in the brain called the supra-chiasmatic nucleus (SCN) initiates signals to other parts of the brain that control hormones, body temperature and other functions that play a role in making us feel sleepy or wide awake.

Melatonin is a natural hormone made by your body's pineal (pih-knee-uhl) gland. This is a pea-sized gland located just above the middle of the brain. During the day the pineal is inactive. When the sun goes down and darkness occurs, the pineal is "turned on" by the SCN and begins to actively produce melatonin, which is released into the blood. Usually, this occurs around 9 pm. As a result, melatonin levels in the blood rise sharply and you begin to feel less alert. Sleep becomes more inviting. Melatonin levels in the blood stay elevated for about 12 hours - all through the night - before the light of a new day when they fall back to low daytime levels by about 9 am. Daytime levels of melatonin are barely detectable.

As we age and living in the lighted society that we live in, naturally occurring melatonin levels are dropping in people. So supplementation may be necessary to overcome this.

I tried it several years ago and was very skeptical but I take it every night still.

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I used to have that problem but I take 3 mg of melatonin (in a gluten free tablet) now and I fall asleep faster and stay asleep all night. Over the counter in the vitamin aisle. If you decide to try it,just make sure it's gluten free (will say on the bottle). Just one an hour before bedtime should do the trick.

A special center in the brain called the supra-chiasmatic nucleus (SCN) initiates signals to other parts of the brain that control hormones, body temperature and other functions that play a role in making us feel sleepy or wide awake.

Melatonin is a natural hormone made by your body's pineal (pih-knee-uhl) gland. This is a pea-sized gland located just above the middle of the brain. During the day the pineal is inactive. When the sun goes down and darkness occurs, the pineal is "turned on" by the SCN and begins to actively produce melatonin, which is released into the blood. Usually, this occurs around 9 pm. As a result, melatonin levels in the blood rise sharply and you begin to feel less alert. Sleep becomes more inviting. Melatonin levels in the blood stay elevated for about 12 hours - all through the night - before the light of a new day when they fall back to low daytime levels by about 9 am. Daytime levels of melatonin are barely detectable.

As we age and living in the lighted society that we live in, naturally occurring melatonin levels are dropping in people. So supplementation may be necessary to overcome this.

I tried it several years ago and was very skeptical but I take it every night still.

I've heard that melatonin works in many; not me, though. Not one bit of difference. But as our bodies are all so very different it makes sense that what works for one may not work for another. The only thing that works for me is prescriptions meds but am hopeful that will change in the future!

But of course it is far preferable that someone who has not yet tried melatonin should try it before other things. Hopefully it continues to work so well for you! :)

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I've heard that melatonin works in many; not me, though. Not one bit of difference. But as our bodies are all so very different it makes sense that what works for one may not work for another. The only thing that works for me is prescriptions meds but am hopeful that will change in the future!

But of course it is far preferable that someone who has not yet tried melatonin should try it before other things. Hopefully it continues to work so well for you! :)

me too! Melatonin, valerian, passionflower...none of that worked for me. Lunesta, ambien, sonata...xanax, flexeril, valium....zip. :blink: Then, I would be AWAKE and trembling from the medication...

I agree with love2travel--a body that's ill may be unable to absorb and use something that another person can.

A doctor told me to be careful of using melatonin for too long as you may not be able to adjust to your own natural sleep rhythm. Just passing that along. :)

I have found that every BODY is different and unfortunately, for me, the things that have helped others have often proven to be more harmful in my messed up system..bummer!

I wish I could get a good night's sleep just by taking something. I forget what a good night's restful sleep is......sigh.... and yet, I remain hopeful it will turn around in time! :)

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I've always had difficulty falling and staying asleep. I'm falling asleep a bit easier since starting the diet (finally able to exercise during the day which is probably making me more tired), but I wake up throughout the night.

Does this happen to anybody else? Any suggestions for what I can do?

This is what I do on most nights. I eat a couple cups of popcorn. I think ( and this is just me) that Celiacs blood sugar goes down in the night and while we are not hungry this limits our sleep. I don't do the popcorn every night, but often enough that I am rested and have pretty good energy the next day. Maybe this will work for you. P

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Have you considered other food intolerances? Sometimes they mimic the same problems you had before going gluten free.

Dairy, soy, corn and nightshades are the frequent offenders.

Wishing you a good night's sleep,

M

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This might seem weird, but how dark is the room you sleep in? I'm really sensitive to light. Since my partner made us black out curtains I sleep MUCH better.

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Magnesium is also involved in regulating sleep, and celiacs often have low or deficient levels. It's difficult to test for sufficiency via blood tests too.

Honestly, my PCP recommended trying it for a few weeks as I was a little on the low side and some muscle issues. My thrice weekly insomnia basically disappeared. Start on a low dose and increase gradually, as it can have a GI impact as well. Maybe 250, then 400. If you tolerate the 400, try 600. Give it two or three weeks before you give up on it.

Until I get lazy and forget to take it for a few days. And... I'm awake.

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My insomnia is also affected by soy and dairy as well as gluten. Soy probably actually makes that worse for me then gluten does.

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Magnesium is also involved in regulating sleep, and celiacs often have low or deficient levels. It's difficult to test for sufficiency via blood tests too.

Honestly, my PCP recommended trying it for a few weeks as I was a little on the low side and some muscle issues. My thrice weekly insomnia basically disappeared. Start on a low dose and increase gradually, as it can have a GI impact as well. Maybe 250, then 400. If you tolerate the 400, try 600. Give it two or three weeks before you give up on it.

Until I get lazy and forget to take it for a few days. And... I'm awake.

My chronic pain management doctor told me I must take at least 900 mg of Magnesium Glycinate (he said it is the only form that abosrbs 85% - others are around 30-40%) and work my way up to 1800 mg per day! But he said that is mostly for my severe chronic pain. I am currently on 600 mg per day and am gradually working up. Have been on it a couple of months and notice no difference in insomnia or pain. But I am hoping to very soon!! :)

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This might seem weird, but how dark is the room you sleep in? I'm really sensitive to light. Since my partner made us black out curtains I sleep MUCH better.

As I am sensitive to light we also have darkening shades. Alas - no help. When you think about it, much of my insomnia results from chronic pain and having to get up to walk around at night because it is so difficult to lie down (or sit). Hopefully the supplements I am now taking will soon help. Perhaps it is time to consider cutting out other things such as soy??!! My chiro told me I must cut out aspartame and MSG. Have done the aspartame but not the MSG yet. Very rarely have it, anyway, but that is the next step.

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Melatonin was a godsend for me until I developed an intolerance to it. Imagine waking up flat of your back and feeling like you're falling out of bed. :P Dizzy was not the word for it. It got so bad i couldn't even sit up without nearly falling out of my chair. As soon as I stopped the Melatonin that stopped, but, whoo, that was a scary couple of days til I figured it out.

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Hmm, this might be too far off your radar, but I've had some good results with accupuncture for other pain/inflammation problems. Some interesting studies show that it can help as significantly as mild opiods for pain.

In the thought that pain is the baseline issue, but lack of sleep surely doesn't help, so must fix pain to fix sleep, and fix sleep to fix pain...

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Hmm, this might be too far off your radar, but I've had some good results with accupuncture for other pain/inflammation problems. Some interesting studies show that it can help as significantly as mild opiods for pain.

In the thought that pain is the baseline issue, but lack of sleep surely doesn't help, so must fix pain to fix sleep, and fix sleep to fix pain...

I have acupuncture and massage treatments each week and they do provide temporary relief. And chiro when I need it. Oh, and physiotherapy. You're right - the key is restorative sleep. Narcotics, opioids, muscle relaxants, etc. have not helped me whatsoever with the pain. Morphine? Nil. Oxycontin? Zip. However, I have seen a chronic pain management doctor who is trying to get me on the right combination of medication so I can sleep and get pain relief. Hopefully sooner than later!

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      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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    • Confused
      I have not. I'll talk to my doctor about it
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