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

Zelnorm (ibs Drug) Pulled Off The Market For Deaths

Fiddle-Faddle

Recommended Posts

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Zelnorm, made by Novartis, was pulled off the market on March 30, 2007: Open Original Shared Link

It was prescribed to people diagnosed with IBS.

I can't help wondering how many of those people to whom it was prescribed actually have celiac, and their doctors never bothered to look for it but just handed them a prescription.

I noticed in my local paper today ads about this from some of the law firms who specialize in medical malpractice. I was thinking this might be another way we can get celiac awareness "out there." We can contact these law firms and give them info about celiac, which should totally win their cases for them, both against Novartis and against the doctors who wrote a band-aid prescription without ever looking for a dietary cause of symptoms.

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

Celiac.com Sponsor (A8-M):


phakephur Apprentice
phakephur
Posted

I thought this part was interesting. I'm sure these patients don't try gluten-free diet before their doctors pronounce their condition unresponsive to any other treatment.

Though the drug will no longer be widely available, patients who have no other treatment options could still get access to the drug. The FDA said it is likely to allow Novartis to continue selling Zelnorm to patients if their doctors say they have disease that does not respond to any other treatment and if the benefits of treatment with Zelnorm outweigh the risks of serious side effects.
MrsM Newbie
MrsM
Posted

I noticed that the Zelnorm story on WebMd has a link to a WebMd message board: Open Original Shared Link

One person posted a message saying that if she/he can't take Zelmorn anymore, she/he will go back to the Atkins Diet "which seemed to help". If someone here has a username/password at WebMd, it may be worth posting a reply letting that person know that gluten intolerance could be the problem.

Lisa Mentor
Lisa
Posted

I was put on Zelnorm prior to my diagnosis.

Nantzie Collaborator
Nantzie
Posted

Ugh. This is why I consider the first few years of a prescription being out on the market to just be another phase of their clinical trials. Soooo many drugs get pulled that I wouldn't trust anything until it's been out on the market for a few years.

Nancy

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
  • Author
I was put on Zelnorm prior to my diagnosis.

Did it help you?

Anonymousgurl Contributor
Anonymousgurl
Posted

I was put on zelnorm by a doctor who refused to test me for anything. He said that all I had was IBS. I took zelnorm for a year, and it made me even sicker. It was horrible. Finally I switched to a private M.D. who practices alternative medicine and he took me off of zelnorm immediately and started testing me.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Did it help you?

Did it help me? I never thought that I could regulate it, or rather regulate me. I do recall that it kept me in the house in the morning for several hours. I don't remember any side effect other than that. Soon after that Celiac kicked in, and found way no need for it.

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. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

      If you haven't noticed a difference yet, bump up your Thiamax. Add in another Thiamax with breakfast and lunch. Increase the NeuroMag as well. You can add in another Benfotiamine, too. Thiamine is safe and nontoxic even in high doses. Taking more is fine. I had to bump mine up several times when first starting. It's a matter of finding what...
    2. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance nor a dairy allergy. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy....
    3. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    4. Scott Adams
      0

      Can Your Gut Microbiome Predict Celiac Disease Years in Advance?

    5. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hi @knitty kitty Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially w...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,100
    • Most Online (within 30 mins)
      7,748
    Pat Relyea
    Newest Member
    Pat Relyea
    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

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      Insomnia help

      By trents · Posted

      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I have taken the vitamins for a week. Haven't noticed any major changes but I will give it more time to see.
×
×
  • 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.