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

Who Else Takes...


num1habsfan

Recommended Posts

num1habsfan Rising Star

I know I mentioned this in my last post but nobody's replied since so I'm gonna put this in a separate area so everyone sees it...

Like I had said, I have now been prescribed Zelnorm which WILL drive me completely broke!! ($150/month, no drug plan covers it)...

My pharmacist said it'll probably take a month before my mody accepts the meds...

The side affects listed are:

  • headache
  • diarrhea
  • abdominal pain
  • nausea
  • flatulence
  • dizziness
  • back pain
  • flu-like symptoms (fever, muscle ache, fatigue, headache and/or cough)

Since I started these yesterday I've definitely had more diarrhea than normal, and gas, and back pain, and a fever...

Has anyone else had side affects from Zelnorm? and how long did they last for you???

~ lisa ~


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



Celiac.com Sponsor (A8-M):



linds Apprentice

I took it!! for IBS before going gluten free. It gave me diarrhea the first week or so and then everything worked itself out as I had had constipation before. I also felt dizzy and was really sleepy all the time but that went away after a week or two also. I stopped taking it because we wanted to know that going gluten free was what was helping me feel better not the pills. But i really liked it. Its a bummer that your insurance doesn't cover it. I never realized how much it was since my insurance did cover it. Hope that helps you some.

debmidge Rising Star

Lisa: what reason does insurance give you for not covering it? (I am asking only in event I can help you to get them to at least pay something towards it.) I do insurance as my job.

jenvan Collaborator

I took Zelnorm for a while. I am not a huge fan of it. For most folks I've talked to, it just gives you D. Have you tried psyllium/fiber supplements? I would exhaust the more natural options first, if you haven't. Psyllium works better for me than Zelnorm ever did...

AmandaD Community Regular

Use Citrucel for IBS-D or C. IT's amazing.

num1habsfan Rising Star

I'm in Canada, theres no such thing as insurance ;) We have things called drug plans, where you can apply to be covered for 65% of any prescription expenses. Some certain things just arent covered.

I dont actually have IBS-D or IBS-C. He's just giving me this for pain relief because I said that Buscopan doesnt help me any (and I can tell Zelnorm is much stronger because it REALLY knocks me out literally speaking of course).

I'm supposed to be on it for 3 months so I'm not gonna quit it but yeah the diarrhea/tiredness/fever/headache/back pain really sucks I tell ya -- more excuse to miss class for the bathroom i guess :lol:

~ lisa ~

Archived

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

  • 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. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,300
    • Most Online (within 30 mins)
      7,748

    Philbin
    Newest Member
    Philbin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.