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

[Penel]

Hello Tilly

Very pleased to hear you have found something that works for you.

[blowinginthewind]

Delighted to here this. I will talk to my GP about it,

Liz in UK

[Megaloo in reply to blowinginthewind]

My GP was very excited about it when my consultant proposed it - it's a cheap drug apparently, and has been used for a very long time (including for "vulnerable" groups - pregnant women and people having chemo) so is seen as a safe one too. There's an official trial underway, so it's currently used off-label but I think (hope) most GPs would be amenable to give it a try. Good luck Liz

[blowinginthewind]

Thanks you, I will talk to GP, and depending on that, to my Consultant.

Liz in UK

[Researchfan]

That’s great. Thanks. I’m glad you’ve found relief.

I figured after much trial and error, research and following Dietetics/Gastroenterologist advise that IBS diarrhoea could be a histamine sensitivity, and or food allergy. Especially as low fodmap diet didn’t really work for me either. A low histamine diet helps for me.

Ondansetron is listed as a medication for mast cell disorders (histamine release and other chemicals released) so this is very interesting.

I’m still getting episodes of diarrhoea and pain, even though gluten free, and can usually attribute it to excess histamine and or food allergy (wheat, grains and eggs) I find it difficult to follow a histamine restricted diet but I try. I’m sensitive to a component of wheat, not coeliac. But I also read that a higher percentage of patients with coeliac disease (or any gut disorder) are more likely to have histamine intolerance. I just wonder whether you have had other food intolerances or allergies etc. ruled out?

X

[Megaloo in reply to Researchfan]

hi Researchfan

I did an exclusion diet with an NHS-registered dietitian (I went private, but wanted to find someone reliable). I did an extreme exclusion diet for 4 weeks (7 ingredients only, from memory), then gradually reintroduced items. It took months but the upshot was that I remained symptomatic on even the most extreme restrictions - so her take was that it wasn't related to food as such.

Really good luck, it's exhausting looking for answers I know

[Researchfan in reply to Megaloo]

Hi Megaloo,

Thank you 😊. It is. It’s good (or not!) to know we are not alone and others are trying to find answers for their health too. Everyone is different yet we are all human.

X