• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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?
0

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites
Ads by Google:


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. :(

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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....

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!!)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,469
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
  • Upcoming Events