IBS research study in Reading/London looking f... - IBS Network

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IBS research study in Reading/London looking for participants..

LFHell profile image
20 Replies

I found this NHS/Phd study which sounds really good and you can do it even if on low fodmap diet, as they just give you a supplement to take for a month, a prebiotic - GOS sugar found in breast milk (but synthesised in the lab). She said there's already been 2 studies on this product and it increases bifido bacteria which is often lower in IBS patients. They think this will bring better health for IBS patients.

bepartofresearch.nihr.ac.uk...

You just need to be able to get to London or Reading for 4 trips to take urine and stool samples tho think it says some of the trips could be negotiable? I've signed up.

Even if you don't sign up, they are hoping the study will be published in 2025 and the prebiotic released on the market soon after as they already have a manufacturer. I feel excited to find something that might help..

Liz

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LFHell
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JanetJAM profile image
JanetJAM

hi just had a look sadly there seems to be an age limit of 65 so as I’m 73 can’t join that’s a shame.

LFHell profile image
LFHell in reply to JanetJAM

Sorry to hear. I will let you all know when they release the product, as the researcher already has a buyer lined up.

xjrs profile image
xjrs

Interesting. Monash University had a blog on this back in 2022:

monashfodmap.com/blog/human...

Many IBS sufferers have dysbiosis - i.e. bad bugs dominating in the gut. If HMOs act like GOS (a FODMAP) and a prebiotic, this could provide feed for both the bad bugs and the good bugs potentially exacerbating IBS symptoms. This is why so many people get relief from a low FODMAP diet (at least initially). Though being low FODMAP for a long time is not great for the microbiome overall, since the good bugs aren't gettting fed either.

If the aim is to increase Bifdobacterium, there are probiotics that contain this already (such as Alflorex). Personally, I would prefer to increase my Bifdobacterium levels with probiotics first, to get the bad bugs under control. Once they are under control, then try prebiotics to help the good bugs to flourish and continue to keep the bad bugs under control. Otherwise you are straight away feeding the bad and good bugs and could end up with symptoms. I'd always recommend probiotics, allowing symptoms to settle first, then try prebiotics.

Bracondale profile image
Bracondale in reply to xjrs

From my experience your viewpoint makes perfect sense. Increase beneficial bacteria with probiotics to crowd out less desirables, then help beneficial to flourish with prebiotics.

LFHell profile image
LFHell in reply to xjrs

Thanks for your reply and i agree.. prebiotics often upset my gut but since this was the original probiotic found in breast milk when bifido bacteria is highest in life ,and also i've read about using breast milk in a study for ibs before, and she said they've had success with it in other studies but they didn't have "controls", so i'm hopeful. She also said they are using a low dose 5g and so far side effects (which could be either control or GOS supplement as its a blind study), have been bloating which passes after 2 days. I did ask the question about side effects because i was also worried about it being a fodmap! But i tolerate beans ok with GOS is in mainly i think? In small doses anyway, and canned!

I do like Alforex too but it didn't seem to grow any bifido for me, [tho those were private tests and so they may have not been accurate. But i did trust Atlas as they really seemed like trying to help people when i spoke to customer services and they were scientists and from their fb posts i saw later. They did zoom calls during pandemic for education.] And i seem to have lost all my bifido bacteria on the low fodmap diet which is backed up by studies. She says this may help low fodmap people get their good bacteria back.. I first took Alforex when i had gastritis and i did find soothing. I take other probiotics too but not Symprove yet and none of them really work. Had most success with VSL#3 which i was taking just before i got gastritis (and was wondering if it caused the gastritis but the gastritis got better and i was still taking it). As my gut profile looked not bad in 2019, when i had taken antibiotics a month before and was taking Alflorex and Vivomixx too. but i still had no bifido or lactobaccillus bacteria. I did have 1% streptococcus thermophilus which is in VSL#3 and also Alpro soy yhogurt i was taking.

VSL#3 had fallling out with the makers of the probiotics tho and they kept the name but Vivomixx kept the probiotic formula. So the VSL3 i took was actually untested eek:

exegipharma.com/verdict-aga....

xjrs profile image
xjrs in reply to LFHell

I believe it is difficult to properly test for bacteria in feaces with 100% accuracy.

LFHell profile image
LFHell in reply to xjrs

Agreed and with private you dont know what you are getting tho they used the same testing method as British Gut project. But i read the other day they can test for 60% of bacteria now. I think it also depends on what you've eaten that day. But mine seemed relatively stable til it dropped on the allergy elimination diet :( First 2 tests had similar results. Still they might have missed it..

xjrs profile image
xjrs in reply to LFHell

Yes. Restrictive diets can really mess up your gut flora. The difficult thing with IBS is finding what supports you in terms of getting symptoms under control enough to be able to widen your diet, so that the microbiome is fed well, but these supports can be very individual.

LFHell profile image
LFHell in reply to xjrs

I have trying to add back fodmaps but they all give me reflux now. :( Except beans. I have a can of chickpeas every week now. And should maybe eat beans at the wknd too to ensure getting anough but that may increase my gut pain. I think the dieitian should have been firmer with me when i first did the diet as i did the elimination phase for too long coz hormones (and a holiday) got in the way of testing foods. I think i may tolerate one fodmap fruit like apple or pear once a week tho maybe. Need to keep trying but having a break again for now. How did you manage to add them back? One nutritionist said to do small amounts everyday not once in a while.. but then you get the stacking effect.

Wierdly the gastroenterologists at Addenbrookes seemed to think i should be following it strictly forever as when i said i eat onion and garlic still in readymeals and takeouts, they said seems you've slipped from the diet :S Wish i hadn't started it but it has cured my reflux but possibly worsened IBS as developed food allergies.

xjrs profile image
xjrs in reply to LFHell

FODMAP is not an all or nothing approach. The reintroduction phase identifies what you can tolerate. I normally start with 1/4 to 1/3 of a portion size for 2-3 days and record symptoms (can be up to 4 days), if that is OK I increment for another 2-3 days etc. If an amount gives symptoms, I cut back to the former amount for longer to give the body more time to get used to it. Sometimes this can result in a food being eliminated.

The only way I managed to introduce more foods and not be completely restricted was with Alflorex probiotic (and Linaclotide since I am IBS-C).

I still have intolerances but less than I used to. Prior to Alforex I could hardly eat anything without being in pain.

LFHell profile image
LFHell in reply to xjrs

Thats good to know. Maybe i will try it again after the study, as they would be the perfect time to feed it. So far i feel probiotics may make a small difference but not much

I did the re-introduction phase but was intolerant to all of them, garlic less than onion at the time. Beans are about the only group i could manage big portions of. Brocolli i can't even manage a low fodmap portion. It does seem to be foods i overate that im intolerant too also. And i hate supermarkets for adding wheat, dairy, onion and garlic to everything, im sure its causing gut issues. But then my dieititian said you'll prob never be able to eat these foods again when i asked. :( Bad advise as i then didnt try, except when i got convenience food as i was struggling to know what to eat. So feel let down by her. That was about 10 years ago i think. But i've only cut them out again strictly for allergy diet but my gut wasn't better the first 6 years. then did allergy diet and got strict again. This time i do feel better. I read low fodmap diet is contraindicated for constipation btw. Doctors should really be more knowledegable before prescribing this diet to everyone because some people can't go back...

LFHell profile image
LFHell in reply to xjrs

Maybe they should give SIBO antibiotics to everyone then? Or do they target the small bowel only? As i agree its a constant battle with these bad bugs and so many things point to it being bacterial, due to symptoms provoked by food and gargling in the stomach as if there's a war going on in there :P Tho i know doctors say those noises are something else but its so loud it feels like your stomach is talking to you and its only after trigger foods :P

xjrs profile image
xjrs in reply to LFHell

The problem with antibiotics for SIBO is the fact that SIBO has a set of underlying causes, so it you don't have one of the causes, you won't have SIBO. Plus, if you don't treat the underlying cause of it and you do have it, it will keep coming back making a round of antibiotics for potential SIBO in isolation wouldn't necessarily be worth the hassle.

LFHell profile image
LFHell in reply to xjrs

But if you dont treat it will it ever go away? If you treat the cause will it get better on its own? I do have some of the triggers, took omeprozal in the past with nurofen and then recently for gastritis. Was looking at dates yesterday, and i stopped taking it in February and then a few weeks later developed constipation. Wondering now if it has triggered SIBO :( But my symptoms aren't too bad as long as i dont eat fodmaps at all. No way to live tho :(

xjrs profile image
xjrs in reply to LFHell

You need to treat the cause of SIBO first, then treat the SIBO itself.

In theory, this means that once you treat the SIBO, you shouldn't get further rounds of SIBO in future since the cause has been treated. If you treat SIBO first without identifying and treating the cause, it will keep coming back.

Regarding PPIs, it depends on how long for - we may be talking years of use rather than months. I was on them for months (maybe 18 months) and was told that wasn't long enough to cause SIBO.

One indicator may be if you take a good probiotic and your symptoms get gradually worse and worse over a period of time (after the usual bedding in period) - this is because you are adding bacteria on top of bacteria in the small intestine. If probiotics provide some relief (or do nothing), then that might be an indicator that you don't have SIBO. All of this needs discussing with a medical professional/gastro.

Many people who think they have SIBO, statisitically probably don't have it (according to my gastro). It is more likely to be IBS. There are many 'therapists' out there pushing people down the SIBO route and unnecessarily making them very ill with the SIBO diet protcocol and antimicrobials. This is what happened to me.

LFHell profile image
LFHell in reply to xjrs

SIBO is quite fashionable on the internet right now. Annoyingly i think this is the reason the gastro doc wanted to get rid of me because i kept asking about this bacteria which is a SIBO bacteria but not one the NHS recognises. I think he thought i was after antibiotics but i just wanted to share the info i'd found :( I may have treated it already by almost cutting out cheese but this has had the negative effect of C (tho could be fodmaps causing too). So i have no chance to discuss it with them, i think they also had no time due to NHS crisis :( Sadly as no idea if i'll ever get a chance to see a gastro again, i was only referred due to fevers.

LFHell profile image
LFHell in reply to xjrs

I'm really sorry you were made ill. I never fully trust anyone but was considering taking antimicrobial vinegars i found through Chuckling Goat - which is apple cider vinegar with added herbs. From what i've read the herbs are safer than antibiotics tho but maybe not in high doses? Or did you take antibiotics too? I hope the vinegars have lower doses of herbs. :S

anasfarmacy.co.uk/

So far the price has put me off !

xjrs profile image
xjrs in reply to LFHell

I didn't have SIBO, so none of it was of use to me. I have IBS-C with visceral hypersensitivity and that is what I had all along.

I ended up on Rifiaxmin (for hydrogen) and Neomycin (for methane) plus a ton of different natural antimicrobials. All a waste of time and money in my case. Plus the treatments and the diet - sometimes just liquid food Absorb Plus made me very ill and wrecked my microbiome. In the end making my C worse in the long term - I wouldn't have said I was particularly constipated before their treatments.

LFHell profile image
LFHell in reply to xjrs

That sucks! What is visceral hypersensitivity, from the sound of the name, it sounds like they think IBS patients are more sensitive to bloating. But I dont see anyone else with stomach sticking out like mine and the name makes me feel like we are being disbelieved still, as it is quite painful having a huge bloated belly. And constipation is the worst for that! It gives me reflux as its pushing everything back up? Also wonder if reflux is a SIBO symptom, i think gastro doc is ignoring me because they aren't allowed to treat outside the guidelines or they can get struck off which is fine but i just wanted to discuss his thoughts, and they just refuse to discuss papers at all :( Are you in the UK?

xjrs profile image
xjrs in reply to LFHell

Yes. I'm in the UK.

IBS Pain:

iffgd.org/wp-content/upload...

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