Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Really - Wth?

Joni63

By Joni63
in Related Issues & Disorders

Recommended Posts

Joni63 Collaborator
Joni63
Posted

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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?

Joni63 Collaborator
Joni63
Posted
  • Author

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.

IrishHeart Veteran
IrishHeart
Posted

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)

Joni63 Collaborator
Joni63
Posted
  • Author

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?

IrishHeart Veteran
IrishHeart
Posted

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. :(

Joni63 Collaborator
Joni63
Posted
  • Author

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

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....

Joni63 Collaborator
Joni63
Posted
  • Author

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.

IrishHeart Veteran
IrishHeart
Posted

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 :)

Joni63 Collaborator
Joni63
Posted
  • Author

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!

maryanno Newbie
maryanno
Posted

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!

cap6 Enthusiast
cap6
Posted

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!

Joni63 Collaborator
Joni63
Posted
  • Author

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.

Judy3 Contributor
Judy3
Posted

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!!)

Joni63 Collaborator
Joni63
Posted
  • Author

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.