Low FODMAP diet / IBS sufferers

My mum had go on a low fodmap diet. Very restrictive, but if you cook everything from scratch, then it's fine. So using leek tops instead of onions etc. She sent us a list so when she came over, we would just substitute high fodmap items with low ones and it's all doable and you can cook most meals.
Anyway after a few years of this, she started reintroducing high fodmap foods and they are all now tolerated in moderate quantities, so going out for meals is fine.

So hopefully this gives you some hope. But stick with it for now.

Edit - the big items like dairy and gluten are pretty easy to manage now. Everywhere does alternative milks. Eg Oat coffees are nicer than milk ones anyway. (Use Oatly Barista if you like flat whites, lattes etc at home). GF pasta is easy to come by and if you have a bread machine, then making your own bread is pretty quick/ low effort.

I did the low FODMAP diet a few years ago now. I think I was on the restrictive diet for about 6 months and probably another 3 or 4 months re-introducing foods.

I found that I just had the same breakfast and lunch each day then varied the evening meal. Yes, eating out was hard and, to be honest, there wasn't much variety in eating at home but it was definitely worth sticking with. By avoiding trigger foods, I've reduced the time spent having bowel movements (3 hours 10 minutes in one day was a bad day) and generally only need to open my bowels once a day now. Occasionally, a mid morning hot chocolate made with lacto-free milk will catch me out but I only have those when at home now. Swapping to a white chocolate mix has helped.

Going around the supermarket and looking at the small section of 'free from' can be quite upsetting. I found some moo-free chocolate and sesame snaps to crave my sweet tooth and also some recipes for snacks.

Also, I no longer have several hours of discomfort and wind which I used to get after lunch if I'd made a bad choice the night before. This can still happen if I misjudge a portion size but it is the exception rather than the norm. A good example is gravy, a small amount is fine, a bit more will cause post-lunch discomfort for 2 to 3 days. I've not tested going back to a swimming plate but I can't see it would be good.

A recent development on the gravy front is that intermittent fasting has also help. I knowingly had too much gravy with a roast on Saturday but no discomfort the following day. My thinking is that there was no breakfast to help push the meal form the night before through my system so all processing was delayed.

My main trigger is onion (I guess all of the alliums but not really narrowed it down). That can be hard but to managed because onions or onion powder is in a lot of sauces etc. Most of the time I try to avoid but I sometimes take a risk if I know the next day or 2 is going to be at home.

Like you, too much bread can cause problems and excess milk can also cause discomfort. To make life tricky, I can cope with some ice-cream but not others. I now have lacto-free milk.

Regarding having to give up foods, it does get easier with time and remembering your goal helps. I now know I'm going to feel rubbish after eating certain foods or drinking too much, and that which outweighs the satisfaction from momentary consuming something I enjoy. My son's birthday is Dec 27th and we also try to head out for the day. My approach is to really cut back and watch what I eat over Christmas so I can enjoy his birthday. Doesn't ruin Christmas or his birthday. That can only be described as a win.

That's a bit of an unstructured dump (no pun intended) but it's my experience. Overall, stick with it. It gets easier and the benefits are worth it. Going out and being away from your bathroom becomes less of the challenge and makes life more varied.

I took part in this clinical trial. The successful results mean that the product is under consideration by the NHS as a routine treatment for IBS-D.

https://www.newcastle-hospitals.nhs.uk/news/virtual-trial-discovers-all-in-one-treatment-for-patients-with-ibs-diarrhoea/

The product is drug free but classed as a medical device <span style="font-size: 0.8rem;"> https://enteromed.co.uk/ so you can buy over the counter/online with no issues.</span>

I would highly recommend giving it a shot as in the long term a low Fodmap diet would be very limiting.

It’s definitely better out and about if you need to find alternative foods, but a few times I’ve found there to be nothing or it’s sold out, and therefore I have the choice of not eating or risking it.

Onions are on the list, and I absolutely love them. As is garlic etc….

Thinking about not feeling rubbish the next few days is how I’m trying to get through it.

These days breakfast is rice crispies with almond milk (which is quite nice) and lunches I’m mostly between a packet of plain rice or ham and mustard sandwiches on gluten bread. My wife does the main meals and she really enjoys cooking, so it’s not easier for her either as many of the things she likes to make she can’t now

Do any of you get severe fatigue? Occasionally I will just have to go to sleep in an afternoon, generally I spot it now, feel a massive headache coming on, and lying down and sleeping for 20mins seems to sort it. Painkillers and pushing through don’t work. I’m not sure that is related to food or not.

IBS was a huge problem for me for a few years, GPs were useless and FODMAP didn’t help. I remember reading from a paper that people would take a 10% or 20% reduction in life expectancy for an effective cure, I would have signed up for that even at 30%

I spent the £50 on the Nerva app and now have no issues, very occasionally I get the start of a flare up but I now know how to deal with it

IBS is a tricky one as it’s different for everyone, so no guarantee it’ll work for you but even if Nerva doesn’t work it educates you on what IBS actually is which helps in itself

Hope you find something that works for you

I've had IBS since 2003 when I had a severe bout of salmonella. I then ignored it for 15 years or so, and just 'managed' it with going to the loo *a lot* and generally feeling miserable. I finally went to the doctor when we were trying for a baby, they ran tests and put me on the fodmap diet. Then covid happened so I've stayed on the fodmap diet more or less since 2019. It's pretty depressing. I've now reengaged with the medical stuff, had a colonoscopy the other day (fun times) which didn't find anything, so i'm being referred to a dietician.

Currently my diet consists of gluten free rice crispies, lots of rice + chicken + pepppers. Odd bit of fish. Pretty boring and depressing. Very restrictive in terms of going out, but has made a big difference to the IBS, tho I have seemingly random flare ups every week or so.

@sniff - what is the product? It looks like a gel - do you eat the gel? I followed the link and it seemed to suggest it was only for treatment up to 21 days.

@chrishc777 i've seen ads for this, but dismissed it as mumbo jumbo - is it actually science based?

@ewan it's a gel which you mix with 200ml of water. It's virtually tasteless but does have a certain taste but I just have another glass of water to rinse my mouth.

Their FAQ answers most questions h<span style="font-size: 0.8rem;">ttps://enteromed.co.uk/faq/</span>

DM me if you are going to try it as I have a discount code I can share.

Changed my IBS massively in a positive direction.

The trial had an open label 8 week phase for all participants. It was explained to us that it's safe way beyond the 21 days. I think that is more for should someone experience IBS-D for that time who hasn't been diagnosed then they should see a GP.

I dismissed it as mumbo jumbo for ages but had a horrific IBS incident that left me feeling horrible for ages and was up for trying anything. If someone told me cutting your own finger off with garden shears worked I would have done it

A bit of research showed that the person that developed it comes from the same uni research centre as the people that developed the FODMAP diet (something along those lines anyway) and read some reviews on the App Store saying it had worked

So since I’d spent a lot of time desperate for a solution I thought it was worth a go. As I said above it worked for me, the hypnosis thing itself is useful (and not only for IBS, I now no longer do the daily hypnosis session but do meditate daily) and the daily readings they give you explain things which is equally helpful.

For example I found stress was a huge factor for my IBS and when I started a flare up I’d get more stressed as I thought it was a purely physiological thing and there was nothing I could do except watch my diet and hammer my stomach with a massage gun to make it maybe slightly better. After using Nerva I understood the brain gut connection thing fully and am able to mentally turn it off (it’s not quite that straightforward but that’s the idea)

If you’re reading this as an IBS sufferer you’re probably thinking it doesn’t seem possible, and of course it won’t work for everyone, but for 20mins of your time a day for a few weeks and £50 if you’re experiencing anything like I was you’ll give it a shot

I don't recall feeling tired as a result of the diet. I was taking an anti-anxiety tablet at the time. This was for my mental health and also because it caused mild constipation, which did make me drowsy in the evening.

My wife is the main cook too. And whilst she moaned a bit about having to restrict what she ate, she has now commented on how not eating onions, garilc etc has improved her gut health.

I’ve had IBS since 2003 when I had a severe bout of salmonella.

I was watching the thread with interest as I had a curry a few weeks ago and one piece of chicken appeared pretty bloody. Next day I had a bit of an urgent visit to the bathroom then thought nothing more of it. However since then any even mildy chillied food is followed by another mini-crisis within 3-4 hours, always at the most inconvenient moment.

Is it possible that salmonella and/or diarrhoea can affect your gut and can you get prescribed pro-biotics or similar to bring it back to health? I understand that buying any pro-biotic product on the high street is a bit of lottery as they aren't sold under clinical regs.

My alternative hypothesis was a new regime of daily Berocca was upsetting things, perhaps the aspartame?

When you guys were doing the hypnotherapy and the gel mentioned above were you also FODMAP or were you just eating normally too?

8 weeks in I’m a bit loathe to jack it in to try something different, which might not work, mostly as my wife is making such an effort to support me.

I could do it at the same time though

Any pro-biotic users? I tried but I think the diary meant it made things worse very fast

At a bit of a tangent.  There does seem to be a stress component and also the you seem to struggle a bit with the anxiety and other mental aspects of this.  would some head doctoring help both in reducing stress and in altering how you react to the illness?

Just a gentle thought

Found turning vegan “solved” most of my IBS problems. I’m guessing I was intolerant to dairy all along! Something the NHS is super reluctant to believe exists!

And really isn’t a limited diet!

I was eating normally at the time of doing the hypno. I had tried FODMAP and it made pretty much no difference

I’m now pretty much symptom free eating whatever I want. Caveat to that is that what I want is pretty healthy in general, but I do eat utter rubbish sometimes with no issues. I also skip breakfast but have been doing that for 8 years now and did it before during and after my IBS issues so pretty sure that isn’t making any difference

I’d definitely say stick with one thing at a time, so in your case do the 12 or 16 weeks of FODMAP before trying hypno or gels

@DT78 Just normal diet. Well excluding dairy which is normal for me.

Don't see how you couldn't combine them but then you would need to decide which helped or didn't.

Low FODMAP diet wasn't an exclusion criteria for the trial so I don't see how it would cause an issue.

Thanks all, and re stress I’ve done CBTs, meditation apps like headspace (I just fall asleep) and meds for a short period.

I believe the anxiety is because of the tummy problems not the other way around (and back/hip issues which is a separate topic).

The more poorerly I feel the more I worry it’s something more sinister… the better I feel the more I can enjoy life and generally forget about things.

Another IBS sufferer here, who has emergency bog roll in every jacket pocket and has had a few disasters.

I'm actually fine with dairy, but wheat products, sweeteners and alcohol kill me.

I've not drank for 20 years as a result (I'm sure some assume I'm a recovering alcoholic) and have real issues getting a soft drink that's not sugar free when out and I fancy one. Had to tell a restaurant the other week that pepsi max is diet and full of sweeteners not full fat, they just didn't understand when I queried the taste of my drink. For a while coffee was disaster pants for me, whether it was posh coffee or instant, but decaf seems fine.

My brother's celiac and my Mam has many stomach issues. Me and my son have been tested for celiac and we're not, but both have stomach issues most definitely around wheat products.

I've also found intermittent fasting helps my stomach to be more settled (I guess it likes the rest!)and I can't eat too late at night or I'll get indigestion in bed.

I also found if I have bread later on in the day it's better tolerated. I tend to have cottage cheese or yoghurt with apples for breakfast and feel good. Any cereal or bread at breakfast and I suffer with indigestion and bloating very quickly, even porridge often doesn't agree with me.

I seem fine with veggies and onions and garlic, and spices, but bananas can really disagree with me.

I think we're all different and it's a case of slowly figuring out your triggers. It's seems somethings I can eat in moderation and as long as my stomach is reasonably settled. Others like alcohol or sweeteners are never ever ok.

Stress has definitely been an added trigger for me.

Just found out from the work private health care provider, that being referred to a dietician by the gastroentrologist counts as a 'therapy' and they don't cover that therapy..... but they do cover.... homeopathy!!!! Great so I can't go to an actual qualified person, but they will pay for me to buy some water with memories of shitting like a normal person.

FFS.

I was watching the thread with interest as I had a curry a few weeks ago and one piece of chicken appeared pretty bloody. Next day I had a bit of an urgent visit to the bathroom then thought nothing more of it. However since then any even mildy chillied food is followed by another mini-crisis within 3-4 hours, always at the most inconvenient moment.

Post-infectious IBS is a thing (it is apparently what I have) and normally goes away by itself. Not always tho, as my toilet paper consumption will testify to.

I have IBS, and struggled for years with poop's, bloating, and pain in the side of the stomach. Went for an asthma check up and complained about an irritating cough I occasionally got and straight away the nurse said that's not my asthma it's reflux and she made an appointment with the doctor for me.

I have had various test and just recently had a SeHCAT scan which i'm waiting for the results for. Did the FODMAP for 6 weeks and felt a load better. Fresh onions, garlic and mushrooms, and apples do me in. Fresh garlic actually has me laying on the floor with stomach pains if I have that and I have to be careful with certain foods that have garlic and onions added which is pretty much everything. I'm okay with some stuff and not others.

I've cut loads of food out as for me personally it's just not worth the hassle.

tho I have seemingly random flare ups every week or so

Peppers have a fodmap rating given the a-z app I use.

It's a shitty (intentional pun) existence, I went out for dinner last night and I've spent a good portion of the work-day in the loo so far today.

I do sometimes feel pretty tired after a bad bout in the bathroom, but lately that's been less of an issue most of the time. I rarely had to lie down unless I'd lots of beer the day before, I now can't drink beer at all even though it's not a formal fodmap trigger.

I was looking at the ZOE app and tests the other day £160 for 4 months, but it looks like Nerva would potentially be cheaper based on the comments above.

I have pretty a pretty poorly digestive system and have probably had IBS since I was about 20, so 24 years or so.
I've been to the doctor's literally dozens of times for varying digestive issues but always palmed off with the 'change your lifestyle, lose weight, excercise' stuff which doesn't help when you've tried LL sorts with no success.
I tried low FODMAP diet and found a bunch of triggers (wheat (particularly in pastries), spicy food, raw onions, cucumber, milk). Alcohol was a big trigger, so went sober for a year to see if it made any difference
I still had occasional flare ups, and one day developed a bleeding stomach ulcer. Because of this I had to have a endoscopy and colonoscopy. The results of this showed I have diverticular disease.
It turns out I have IBS and diverticular disease. The doctors are pretty unhelpful and won't refer me for specialist help despite me going there pretty regularly for help when it gets bad, it's a struggle and I get flare ups of each, with slightly different symptoms.

Anyway, to get back to the original post, low FODMAP works to help highlight I tolerances, but I do find personally that these can change, also don't necessarily believe you just have IBS and keep going to your doctor if you are unsure.

Post-infectious IBS is a thing

Yep. But I experienced the opposite. I had a bout of Campylobacter which required 2 courses ab's to clear. I work in the path lab so it was one of my colleagues actually looked at my culture, she said I had no other normal flora present at all. We'd usually expect to see a mixture of bugs including the Camp. Anyway, following the ab's, once my symptoms had cleared, I felt great for a couple of weeks, then my IBS symptoms crept back in.

Suggested to me that my normal flora was completely wiped out and took a while to return, but my normal flora is actually crap and contributes to my symptoms.

I've tried probiotics, prebiotics, live yoghurt, kefir, actimel etc, no improvement. Annoyingly one of the best natural prebiotics is onion. My biggest ibs trigger.... Aliums!! 🙄

I'd like to try a faecal transplant 💩

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I don't have anywhere near as bad symptoms as others here, so you have my sympathies. I would reiterate everyone is different and will have different triggers. IBS describes the symptoms but I think the NHS say we don't fully understand the condition. Fodmap is just one potential source of intolerance, but as others have said do it as suggested by NHS to the end before trying other therapies, and yes you should be able to reintroduce many foods once your symptoms stop, which allows you to work out which triggers are worst for you. My symptoms aren't so bad, that I have reintroduced small amounts of triggers, knowing what the consequences will be! If I am having a bad bout I just cut everything out again.

As well as fodmaps (for me mainly alliums - onion, garlic, leek - and beans and pulses) I would encourage you to cut out caffeine and alcohol for that month, sticking to and drinking lots of water or cordials not fizzy drinks. And stress, harder to avoid, but definitely a trigger for me and I think started my issues.

I agree, once you know what your triggers are then you make an informed choice - you know you are going to be rough afterwards and sometimes you'll just think you'll go without because abstaining is better than the consequences!

The fatigue is an interesting one, I have always had fatigue but when my IBS is bad I get backache, I can fall asleep in seconds if I lie down. But that might not be IBS just me.

Good luck.

Yep. But I experienced the opposite. I had a bout of Campylobacter which required 2 courses ab’s to clear. I work in the path lab so it was one of my colleagues actually looked at my culture, she said I had no other normal flora present at all. We’d usually expect to see a mixture of bugs including the Camp. Anyway, following the ab’s, once my symptoms had cleared, I felt great for a couple of weeks, then my IBS symptoms crept back in.

Ah - I totally have this as well. I've had courses of antibiotics for various things and as you say generally sorts out the IBS for a few days and then comes back. I'd probably also try the poo transplant but doesn't seem to be generally offered.

Interesting discussion.

I'm finding sugar a huge problem.

Anyone else get sore joints? Doctor said it sounded like IBS but that's about it.

I avoid milk, alcohol and sugar.

How do you know the difference between IBS and IBD?

I still think I'm getting issues. Sore stomach until I've been to the toilet.

yes I have stomach pains and cramps which are generally relieved when I go to the toilet. sometimes though it can all come on with real urgency and then have to sprint. not fun

the weird thing is sometimes I can tolerate small amounts and sometimes not. it's almost like it's a specific combination of things.

I was absolutely fine with food until this happened. same as several friends and family I've spoken to. it's almost like there is some unidentified virus going round hitting men in their late 30s/early 40s. I know others suffer too, but it seems a big coincidence!