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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.

Really - Wth?
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16 posts in this topic

Had a sleep study two weeks ago. Just got off the phone with the doctor's office and they said it was normal. Have been taking Ambien CR for 6 months. If I go without it I toss and turn and only sleep about 3 hours a night. So I asked what can we do now to see why I can't sleep? They said the only thing you can do is take sleeping meds!!!!!

Honestly - there has to be other things that cause sleep disturbances!

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Have you recently tried to stop taking this med cold turkey? If you were taking it for 6 months straight you would need to taper off of it as it is addictive. Has your doctor had you taper the dose?

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Have you recently tried to stop taking this med cold turkey? If you were taking it for 6 months straight you would need to taper off of it as it is addictive. Has your doctor had you taper the dose?

No they didn't offer to taper it, they just basically told me if I have trouble sleeping to keep taking it.

Yes I did have to stop taking it suddenly because of an insurance company screw up. They switched me to a generic which I found out later is not gluten free. Since I use a mail order pharmacy it took about 2 weeks to get the correct script. I also was not allowed to use it during the sleep study and I tossed and turned all night. Horrible.

Is there new information out on it that it is addictive? Two doctors in separate practices told me it wasn't. And I also read in the book "Fatigued to Fabulous" that is wasn't.

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I had the WORST withdrawal from AmbienCR. I used it a few years ago for only one week for serious insomnia and no one told me to taper off it either. Be careful!!

Doctors tell you what the drug companies tell them--which are lies. How else would they sell more drugs? (JUST MY HUMBLE OPINION)

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I had the WORST withdrawal from AmbienCR. I used it a few years ago for only one week for serious insomnia and no one told me to taper off it either. Be careful!!

Doctors tell you what the drug companies tell them--which are lies. How else would they sell more drugs? (JUST MY HUMBLE OPINION)

Your probably right IrishHeart. It's all about making a buck (or several)! I waited years to take something though and nothing 'natural' was working either. My iron is low right now so that could be part of the cause.

What symptoms did you have? How can you taper AmbienCR when it's time released and your not supposed to cut it?

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Your probably right IrishHeart. It's all about making a buck (or several)! I waited years to take something though and nothing 'natural' was working either. My iron is low right now so that could be part of the cause.

What symptoms did you have? How can you taper AmbienCR when it's time released and your not supposed to cut it?

I used all the natural stuff too...wide awake. :unsure:

Slowly, my natural sleep rhythm is coming back. I could barely get 1 or 2 hours....now, I get about 4 and I do wake up, but can often go back for 2 more. I also have severe pain issues, tho and that wakes me up.

As I recall, I felt nauseous, jittery, wired, anxious, felt like I was jumping out of my skin..(sort of like I feel on gluten). :o

To taper off, you skip every other night and then go 2 nights without, then 3... etc...and eventually, stop....

good luck I know how hard it is to be an insomniac. :(

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I'm glad your sleep is getting better. It is very rough not getting much needed rest. Do you take meds for pain? Can something be done to relieve your pain?

Oh, thanks. It didn't occur to me to taper like that. :rolleyes: I will definately try it that way when I'm ready!

Have you ever tried light therapy? I tried it and it did work for me. The light has been broken for a while now and I just ordered another. I notice I have a much harder time in the winter due to the dark, dreary atmosphere in the Northeast.

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I'm glad your sleep is getting better. It is very rough not getting much needed rest. Do you take meds for pain? Can something be done to relieve your pain?

Oh, thanks. It didn't occur to me to taper like that. :rolleyes: I will definately try it that way when I'm ready!

Have you ever tried light therapy? I tried it and it did work for me. The light has been broken for a while now and I just ordered another. I notice I have a much harder time in the winter due to the dark, dreary atmosphere in the Northeast.

Many, many drugs. No relief, just stomach pain. I gave up. I don't tolerate drugs well at all.

I live in the NEast, too--it is dreary. My cousin has one of those. Maybe I should investigate it. My Vit D levels are pretty good. I am just in pain. sigh....

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Many, many drugs. No relief, just stomach pain. I gave up. I don't tolerate drugs well at all.

I live in the NEast, too--it is dreary. My cousin has one of those. Maybe I should investigate it. My Vit D levels are pretty good. I am just in pain. sigh....

I ended up buying the hat this time. Seems better cause I can workout or fix breakfast while getting light therapy.

Have your had your stomach issues checked out by a doctor? Maybe you need some antibiotics? There must be something going on that needs attention? I wish you the best at finding a solution. Pain will definately add to the insomnia.

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Thanks. I'm done being scoped, prodded and tested. It's celiac. No need for antibiotics. (they're part of the reason I'm in this mess). I meant that drugs give me stomach pain. Since gluten-free, My stomach doesn't hurt :)

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Thanks. I'm done being scoped, prodded and tested. It's celiac. No need for antibiotics. (they're part of the reason I'm in this mess). I meant that drugs give me stomach pain. Since gluten-free, My stomach doesn't hurt :)

Oh, I'm glad your pain is gone.

Seems a lot of people get relief from the diet and feel better, but the tests don't always show the whole picture. If you know you feel better on it, then that tells you a lot! My mom is a classic case of that. But if you ask her she couldn't possibly have Celiac because the scope didn't show it. Ugh! Luckily she follows the diet pretty well, except for an occasional cheat. My sister and I both have talked until we are red in the face, and she's just going to do what she wants.

Yes, antibiotics can really take their toll...I have 2 more days and I can't wait to be done!

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Had a sleep study two weeks ago. Just got off the phone with the doctor's office and they said it was normal. Have been taking Ambien CR for 6 months. If I go without it I toss and turn and only sleep about 3 hours a night. So I asked what can we do now to see why I can't sleep? They said the only thing you can do is take sleeping meds!!!!!

Honestly - there has to be other things that cause sleep disturbances!

Ambien CR has gluten in the coating. I took it one night and it kept me awake all night and had bad D. I have switched to the generic for Ambien which is Zolpidem. I take a high dose, but it works great!

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I am SO glad I read this. I take zolpiderm & have for several years however have 2 full bottles of Ambien. Guess I'll be trashing those!

Ambien CR has gluten in the coating. I took it one night and it kept me awake all night and had bad D. I have switched to the generic for Ambien which is Zolpidem. I take a high dose, but it works great!

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I am SO glad I read this. I take zolpiderm & have for several years however have 2 full bottles of Ambien. Guess I'll be trashing those!

My prescription company called the manufacturer and they said the Ambien CR is gluten free (brand name). I called one ofthe pharmaceutical companies that makes the zolpidem and was told it is NOT gluten free. Ambien CR is also listed on the gluten free drug registry as gluten free as of feb/2011. Looks like I'm placing another phone call...I'll let you know what I find out.

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Sleep - 3 mg of Melatonin at night does the trick for me. I also have a CPAP machine as my tests weren't normal. I have Central Sleep Apnea. Don't snore, don't have an obstruction, just a brain that forgets to tell me to breath when it's sleeping. I think it feels like it's worked hard all day and it needs it's rest too... (just making light of me!!)

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Sleep - 3 mg of Melatonin at night does the trick for me. I also have a CPAP machine as my tests weren't normal. I have Central Sleep Apnea. Don't snore, don't have an obstruction, just a brain that forgets to tell me to breath when it's sleeping. I think it feels like it's worked hard all day and it needs it's rest too... (just making light of me!!)

I've tried melatonin 5mg time release version with no luck. My doctor is now telling me low iron can cause sleep issues.

Also just an update on the Ambien CR. Just got off the phone with Sonofi-Aventis and Ambien Cr is not made with any gluten ingredients. It is not certified or tested to be gluten free, but has no ingredients in it that contain gluten. The company that I called (Teva) that had the generic zolpidem tartrate told me they cannot gaurantee theirs is gluten free.

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    • 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.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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