In case it helps anyone else - Ondansetron

[Megaloo]

hi there,I was on here for many years trying to find solutions to recurrent glutening symptoms (urgent diarrhoea a majority of days) despite being incredibly carefully gluten free (I was diagnosed with coeliac about 6 or so years ago). My life was increasingly restricted (holidays were a nightmare, couldn't eat out at either restaurants or friends' houses etc, couldn't go and stay with family etc etc). We have a thirteen year old and watching the restrictions on her (and my partner) was miserable  My mental health/general optimism was definitely suffering.

I was also being treated for concurrent Bile Acid Malabsorption (on response to meds, rather than through a SeHCAT scan) but that was getting increasingly ineffective which was making me doubt the diagnosis. FODMAPs or any of the other IBSD suggested cures were completely in effective. I saw a dietitian who through an exclusion diet ruled out IBS as such.

After more biopsies confirmed that my CD was well in control (and therefore my symptoms couldn't be the result of regular glutening), my gastro consultant suggested trialling Ondansetron (it's generally used for managing nausea - often for people having chemo treatment - but general slows down gut transit). It's being trialled as a possible solution for people with IBS-D. I don't fit the general criteria for IBSD (for the above reasons, but also because I have no pain) but frankly I was prepared to try anything. Tho was far from sure it would help.

For getting on for a year I've been on 3 x 4mg Ondansetron daily. It has truly been life-changing. I am now a "normal" coeliac - in that I can go out and eat (with attendant risks obviously, and once or twice I've paid the price). Occasionally i will drop the dose to 2.5 pills a day if slightly constipated (miracle of miracles!)

I deleted my account here (I was Tilllyxx) and was very happy to leave that life behind, but it crossed my mind it might be useful for people on here to know.

Good luck 

Tillyxx

[Finefornow]

how long did this take to work?

[Megaloo in reply to Finefornow]

Pretty much by the next day - astonishing to be honest. I've been waiting for it to go wrong, but not happened yet...

[Finefornow in reply to Megaloo]

I tried this at 2x 4mg daily and unfortunately did not work for me-glad this is still working for you and hope it helps others

[Megaloo in reply to Finefornow]

I did find it took a few weeks to be completely consistent (and I did start at x3).

But I think it does depend on how each body reacts to some particular element of the drug (I did do the research but have forgotten the details) - sorry it didn't work for you

[Finefornow]

thanks for the reply. I will try again and give it a bit longer!

[Megaloo in reply to Finefornow]

I also set a timer for the middle of the day pill - seems to have helped. Really good luck, it know how miserable it can be

[Asherlove1]

I too have bile acid malabsorption after having SeHCAT scan, and terrible IBS-IBS-d for almost 10 years, with horrendous pain daily. I watched a programme where they used Ondansetron along with hypnotherapy, and my GP put me on it and it helped so much. I even took 6 sessions of hypnotherapy a year later as my gastroenterologist suggested, but that didn't help me at all, just cost a fortune. As I am on fluoxetine, Ondansetron shouldn't be taken with it, so I have fluox in morning and Ondansetron in the evening, and I'm sure it would give me better results if I took more. I've now been given another label CAPS chronic abdominal pain syndrome...