Probiotics causing horrible diarrhoea - should I persevere?

[Toodlesbean]

I’ve suffered from IBS symptoms for a few years now and if anything they are getting worse as I get older.

Ive had blood tests, stool tests - no issues have been found so it’s labelled IBS.
My problems are loose, yellow orange stools, wind, acid reflux, I can go to the loo up to six times a day.

The mornings are generally worse and I improve through the day. Triggers appear to be red meat, tomato based sauces, onions, garlic, possibly milk products and possibly pasta.

it’s so difficult to work out exactly what the problem is as some days I’m fine others I literally can’t get off the loo.

Ive had multiple poo accidents and I’ve only gotten away with it in work by the skin of my teeth on a few occasions and at some point I’m afraid I’m going to have a catastrophic diarrhoea episode and really embarrass myself. once it starts I cannot control or hold it in.

this week I decided to try and get to the bottom of it .I switched to lactose free milk, gluten free wraps to try and at least cut down on these to see if there’s improvement. Two days ago I also added a 20 billion culture probiotic daily to see if that would further help as I’d seen a bit of an improvement reducing gluten and lactose. 2 days of fine but today oh my god I had a sharp pain in my stomach whilst at my desk and I knew I was in trouble.

I didn’t fully make it, had awful liquid bright yellow diarrhoea. In one hell of a mess I was lucky I could contain it all in my knickers (I wear period pants due to this) but they had to be ditched.

to say I’m absolutely sick of this would be an understatement. I’m scared to work, to socialise, to leave the house - this is so unpredictable I am living in constant anxiety and that makes it 100% worse. I was shaking and panicking today until I could see that I was going to be able to get away with it.

So, I’m stuck. I don’t know if it’s the gluten free wraps, the chicken soup I had last night or the probiotic but I suspect it is the probiotic.

should I persevere with them? I’ll be terrified whilst still taking them but if I thought they’d work long term I’d try and stick it out.

Any advice please? I’m desperate now and can’t carry on living like this.

I've not really seen that many unfortunately @PamelaBanisha You could do a search?

I expect that might change over time, as more & more Long Covid people are diagnosed with it.

Are you on Facebook? You can search for & join:

Mast Cell Activation (UK only)
Mast Cell Action - MCAS UK support

These are the two main ones, although there's others about. Lots in the U.S. you can join too.

While I'm here, I'll add other stuff in case it's helpful for others:

Charities:

www.mastcellaction.org/
ukmasto.org/

Other:

POTS (Postural Orthostatic Tachycardia Syndrome)
www.potsuk.org/about-pots/associated-conditions/mcas/

Specialists

www.drtinapeers.com/mcas

syncope.co.uk/mast-cell-activation-syndrome/treatment-of-mast-cell-activation-syndrome-mcas-uk/

meassociation.org.uk/2021/10/iacfs-me-conference-dr-larry-afrin-on-an-overview-of-mast-cell-activation-disease/

(Note. I don't think these doctors are taking any more patients at the moment )

Much of the helpful stuff is from the U.S. Like Dr Afrin.

www.aaaai.org/conditions-treatments/related-conditions/mcas

tmsforacure.org/

Books

www.amazon.co.uk/Never-Bet-Against-Occam-Activation/dp/0997319615

www.amazon.co.uk/Trifecta-Passport-Orthostatic-Tachycardia-Ehlers-Danlos/dp/1733711724

Good luck to anyone suffering with it. It's utterly miserable.

Getting U.K. medical staff to believe you doesn't help either. It can be really hard to diagnose MCAS & even Histamine Intolerance -it's lesser cousin- can be disbelieved or missed.

@Monoplane Name change fail?

So sorry

Oops! Yes it is! 😬

I'm not OP, by the way though!

@Monoplane How funny! I thought it was. Well, I reckon you'll get away with the anonymity then

@MissMCAS thank you for your reply. I am in the fb groups. I tired to get private appointment for a long time but none of them are taking new patients. I see an NHS consultant immunologist/ allergist but he has not been overly helpful. I have it under control now I am hoping. The diet is brutal and I am trying to find a more informal / chatty support to help get through it. Not many people understand what’s it like to live with this condition.

@Toodlesbean how are you doing ?

@MissMCAS yes you are right it is hard to get a diagnosis. My consultant won’t even use the name MCAS. My official diagnosis is idiopathic anaphylaxis and when I questioned him he conceded that MCAS and idiopathic anaphylaxis are the same thing. He said they don’t use the name MCAS in the UK.
It took me almost 3 years to get help and I paid for private allergy tests which sped up the process (all negative) . Thank you for your replies.

Hi OP,
A number of years ago I took a course of anti biotics which triggered ongoing issues of a similar nature.

What worked for me (to a large extent) was cutting right down on dairy (different forms of lactose free dairy etc did not help), avoiding some squash drinks (we buy Robinson's Orange at increased cost now as trial and error led me to believe some squash I was using was not good), changing my mouthwash. Mouthwash sounds too slight an exposure to make a difference but trial and error seems to tell me it does make a big difference.

I also know if I drink Orange juice or eat sugary fairy cakes/chocolate or similar I am likely to have a more urgent need to go.

It's a strange thing to get to grips with as some days I might have had a very good bowel while I have drank loads of diet cola or something like that which goes against what you might expect.

Over a longish period of time I am able to have a fair amount or dairy pretty OK while still avoiding cheap squash, some mouthwash and being wary of Orange juice/chocolate.

Hope you are doing ok, OP.

I think a lot of us on this thread are frustrated because it's so hard to know what is triggering it. It upsets me thinking I'm accidentally making myself sick with what I'm eating and drinking but I just don't know what it is. I even stop eating completely sometimes just for some relief.

And like others, it's almost impossible to get any help from the NHS.

🌺 for everyone

Hello @PamelaBanisha I am so so sorry that it's been so hard for you too. It's exhausting being so seriously unwell AND having to fight against medical professionals who don't even believe you. Well done you for questioning your consultant! It's daft that so many are skirting around the name.

I've been bedbound for years (severe M.E.) & my local immunology department rejected my appointment My POTS cardiologist encouraged me to keep going & I have spent so much money on getting the treatment I needed. I didn't take any allergy tests, just a couple of MCAS ones which were negative.

2.5 years on from starting the diet, I am able to slip in a few higher histamine foods now, so don't lose hope. It is rather a tough diet at first I agree.

I'm sorry I don't know of any other chat groups. I'd just keep posting on the FB groups to chat, so you don't feel so alone.

One tip. My allergy consultant said she thought my MCAS was secondary. More investigations & digging & it turns out I have Hashimoto's too. Now I'm treating that, I'm hoping my MCAS symptoms will improve. I'm certainly out of repeated bouts of anaphylaxis now.

Take care lovely

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Thank you @Monoplane for the flowers. Keep going everyone! x

Hi all,

sorry for the late reply. I’m ok, I have Fybogel to try but I’m too scared to take it on a day where I have work and we’re away for the weekend at the moment.

This week I have completely cut out morning tea and seen a slight improvement. I eat a slice of dry toast and have a glass of water (I’ve had horrible caffeine withdrawal headaches) but it’s cut the urgency and rapid evacuation down. I still feel like i need to go ( and I go at least twice / three times in the first few hours) but at least I can hold on.

yesterday we travelled by bus in the morning. I’d been to the loo first thing but by the time we got on the bus I could have done with going again. I managed to hold on for two hours until we reached the services. That has helped me to understand not to panic and I can hold on if necessary. A lot of it is in my head I’m sure.

today will be the test, a full day out sightseeing in Edinburgh and I drank a few beers last night but made sure I avoided any dairy food.

I’ll be armed with Imodium instants if needs be so I have a back up.

hope everyone else is ok and managing. As soon as I try the Fybogel I’ll let you know if it helps.

Ive never found any probiotics that don't make my IBS worse.

Homeopathy worked to fix my IBS, as well as for my homeopath herself. MN hates homeopathy so there will probably be some snarky comments on this but it can work well for some. Oh and I can’t eat sugar—it seriously messes up the gut microbiome, so have you tried cutting that out? Sorry haven’t got time at the moment to read all the posts so apologies if I am bringing up something that’s redundant.

Hi we are going through a lot with my Dd at the moment ibs wise, we was very cautious about introducing a probiotic so we did it slowly and I’m glad we did. I started with a quarter sprinkled on her yoghurt in the morning, she felt sickly at first but two weeks later she’s on a full capsule and she seems to have improved, she’s had the best week she’s had since beginning of august.

if you have a sensitive gut maybe little at a time would be a good approach? I really feel for you ibs is truly awful and it takes time and a lot of trial and error to see what works.

I am actually having some success with the fybogel!

I got the tablets rather than the sachets and I've been having two a day (dose says six but I didn't want to have an accident).

I'm still having urgent feelings that I need to go BUT I've done my first normal shaped poo in YEARS!!

Thank you so so much for those who suggested it.

Hope things are going ok for you, OP? Edinburgh is a beautiful city so hopefully you got to enjoy it well enough.

So, I’m stuck. I don’t know if it’s the gluten free wraps, the chicken soup I had last night or the probiotic but I suspect it is the probiotic

It's my certain guess it was the chicken soup - unless it was a dairy free one? I say this as you mentioned in your op that you were switching to lactose free milk, but chicken soup often contains lactose milk/cream.

I also cannot eat dairy or gluten, but I DO take probiotics which have actually helped settled and soothed my digestive system.

Hi all! Sorry it’s taken so long to get back to you all.

I’ve taken a Fybogel every evening for two weeks now and IM SO MUCH BETTER!

it’s cut the urgency the following morning down a lot and I now pass more formed stools that are proper brown rather than orange / yellowy colour (sorry).

im not 100% cured but I’d say I’m seeing a good 60% improvement.

can someone tell me what the Fybogel tablets are? Would I benefit from taking one sachet at night and one in the morning?

thanks to all who suggested it!

while nowhere near as severe as this op, I do have the odd accident and I have to go now with diverticulitis. Slippery elm bark capsules have really helped me. I didn’t take them for a week as I’d run out and the diarrhoea came back so now I make sure to take them each day.