Hi all,
I’m looking for advice in terms of people’s experience of what works well for diet. I appreciate that the key driver of IBS is diet but it’s something I am really struggling with getting started and building momentum with.
Do people have a go to diet / routine when you have flare ups that helps you to overcome a flare up and settle symptoms?
Also how do people manage with travel? I travel fairly frequently with work and therefore struggle to maintain a very restrictive diet.
Thanks
Unfortunately its trial and error regarding foods. I have done low FODMAP and gluten free and they have made very little difference to my symptoms. All I can say is plain is best, the FODMAP diet is a good place to start as it cuts out things like onion and garlic which are known big causes. I have cut out gluten but unfortunately haven't seen much if any improvement.
I am really struggling with the diet part, I honestly don't know what to eat anymore.
Re: Travel, i'm not one to comment as I simply can't travel, due to urgency of bowel movements, unless I buy some incontinence pants which I really don't want to do if I can help it.
You do have to discover for yourself which foods suit you better than others. I did the low Fodmap trial for 8 weeks but found that some low Fodmap foods didn't suit me, and some "high" ones were fine and always have been since then!
I started with low Fodmap, and gradually experimented and branched out tentatively. Often in order to be able to tolerate a food, all I had to do was peel it! It was the skins which got me, not the actual vegetable. That was a major step forward (for me anyway.) It meant I could include peppers in my diet and to a lesser extent, potatoes and chickpeas.
So you mainly have to find out by trial and error what works and what doesn't. Don't assume that ALL low Fodmap foods will suit you. They might, but who knows?
When I have a bad flare up I immediately go to a basic extremely plain diet which usually consists of steamed or baked white fish, boiled eggs, white rice, nettle tops or a few green beans or spinach, well steamed, and white ciabatta toast, with butter.
That wouldn't suit everyone but works for me to calm my gut. Then when things stabilise, I gradually introduce more vegetables, and other things into my diet, but am always a bit careful until I am sure I am back on a decent course again. Even then, there are some foods that definitely don't work for me and I steer clear of them for now.
Eating when travelling is tricky unless you can prepare foods that suit you at home and take them with you in a cool bag. Or can identify foods that you should avoid and can find restaurant food to suit you ...often by asking if you can have something plain, and "off menu" which some restaurants will cater for. I don't know. It's always worth asking. I got eggs on toast once, and a plain green salad just by asking, in a restaurant that didn't have that on their menu at all!
I sympathise with your plight, having had 8 years of persistent and intractable symptoms of IBS-C, myself. My advice is to ensure that you have tried at least 6-8 weeks of a reputable probiotic, which you have probably done already. These include Alflorex, and Symprove, both of which have good clinical studies. VSL3# was supposed to have been useful, but the formulation, apparently, has been changed and is now not so effective. Beware of claims made by the legion of probiotic manufacturers- method of delivery is more important than quantity of active bacteria. You could try non-pasteurised Sauerkraut, which is an excellent source of beneficial bacteria, but start with a very small dose, because it can be very unpleasant if your gut microbiome is damaged.
I would add one other, Ferrocalm, which I have been taking for the past six months, and have been experiencing adjustment symptoms from day one, but seems to be correcting my severe gut microbiome dysbiosis. If you haven’t tried this one, I would strongly suggest that you do, as the mechanism for the apparent non-efficacy of many probiotics is related to their inability to utilise iron in the gut, which the harmful, pathogenic bacteria do, and which Ferrocalm can utilise as well.
As you know, the clinical evidence on probiotics is unclear as to their efficacy but are certainly worth a try. FODMAP diets are useful and can help but are temporary, because some of the high FODMAP foods, contain inulins, prebiotics, are essential for a healthy gut microbiome.
You don’t say whether you have Diarrhoea or Constipation predominant IBS, but if the former, it’s worth trying Enterosgel, which you can but through the company which produce the product , or Amazon, because it has been shown to help up 78% of IBS-D sufferers.
Finally, if you haven’t purchased a copy, Professor John Hunter’s booklet, IBS Solutions, is well worth a read. He identifies the various type of IBS causes, and has developed a product Juvia, which can help significantly if you have malfermentation as a cause for your symptoms. He has a detailed questionnaire which will establish your suitably for Juvia.
One other course of action is to try homeopathy or herbalism. I previously thought the former was quackery , but had a negative reaction to a particular remedy, a bowel nosode, which I found astonishingly surprising, given that I though the remedies could not possibly work, given the final dilution of product!
In any event, I do hope you find a diet and lifestyle which suits. I think that if you have been through the gamut of a few good probiotics, you are going to have to find a diet which suits, and which provides the essential for a healthy gut micro.
We do appreciate the daily problems you face. Good luck!
VSL#3 is now Vivomixx and i recommend it. I find it helps a bit
exegipharma.com/verdict-aga....
I’m glad to hear that you think it might help a bit. I tried it in its previous formulation, which, unfortunately, made no difference to my symptoms. It’s now certainly available in the UK from Monday 23rd September. I do note it works out about £25 per month. The suggested quantity of bacteria is very substantial at over 100 billion CFU per capsule, but am not certain how much of the bacterial load reaches the small bowel as viable organisms unaffected by high gastric acidity. One might argue that it might be more economical, and effective, to eat unpasteurised Sauerkraut, where the varieties and quantities of bacteria are much more substantial for a fraction of the cost.
From my own experience, I think it best to try the probiotic, Ferrocalm, Streptococcus Thermophilus, if other probiotics have failed or only have been partially effective, and if you suffer from protracted IBS symptoms, a reflection that high levels of iron exist in the gut which are utilised by pathogenic( harmful) bacteria.
I do find sauerkraut very soothing to the gut when i have pain/nausea. But its also quite expensive to buy fermented foods (at least water kefir which i have at weekends is expensive). And sauerkraut is quite salty so made me thirsty. I also have soya yhogurt Sojade or Alpro with live bacteria.
I didn't tolerate the higher doses of VSL3 well at all (bloating) except when i was on a restrictive diet for gastritis, it helped a lot then. And the streptococcus did take to my gut on a microbiome test but i had to discontinue it when i added back more foods as got bloating and pain all the time. But i'm taking the vivomixx drops currently which are a lot cheaper as i only have 5 drops a day. Vivomixx also contains streptococcus thermophilus but a different strain but i am interested to try Ferrocalm as i did take high dose iron 
Yes, worth a try, especially if you have been taking iron, which is thought, currently, to be damaging to the gut microbiome
What are adjustment symptoms?
These include loose bowel, flatulence, and symptoms, sometimes, which form those related to the Jarisch-Herxheimer reaction. These are typically found after treatment with a specific antibiotic, or anti-fungal treatment, and result from the die off of the harmful bacteria or fungus. It can also follow probiotic treatment. These symptoms include, headache, malaise, fever, rashes and joint pains. The usual disturbed bowel habit is the most reported side-effect from taking probiotics, but if you have a very dysbiotic gut microbiome, you might get other symptoms.
Could that have been what caused the bloating and pain for my with VSL#3 and vivomixx then? Its why i now only take the low dose drops but not entirely sure i've been releasing all the probiotics into the bottle as there is this weird delivery mechanism and I was following the instructions but it was only partially opening the cap and they haven't replied to my email yet as to whether that is correct! 
Yes, it’s quite possible. A worsening of existing IBS symptoms is an indication that the probiotic is working, and that one should continue, reducing the dose if possible. I have been experiencing symptoms with Ferrocalm for about six months, but as the probiotic is in a capsule and a fixed dose, you cannot reduce it, because opening the capsule will result in the probiotic being destroyed by gastric acid. I just “ grin and bear” it! One does have to be careful that something else such as IBD or a GI malignancy is not being missed, but I’m sure these are adjustment symptoms which started on day 1
By the way, VSL#3 used to be formulated as a freeze dried powder, so I wonder how the new formulation in liquid form is not destroyed by gastric acid, unless the quantity of bacteria CFU is very substantial, or the vehicle, similar to the one used with Symprove, has been developed not to be damaged in transit through the stomach.
I'm not sure. I think some strains dont get destroyed by stomach acid but dont quote me! The bottle comes with the probiotics in a capsule in the cap and you break the cap so they fall into the bottle into some vegetable oil. I keep it in the fridge but agree need to know it actually reaches the gut. I def had the worst symptoms on those too in the powder form tho!
Ok, I presume that this stabilises the product. BTW, I saw an earlier posting of yours where you suggested that your IBS is constantly troublesome, without remissions- very similar to mine- so a trial of Ferrocalm would really be worth it. Do let me know how you fare. I have corresponded with the Cambridge scientist, who led the team which developed it.
I find i can't eat out and maintain diet at all. Its horribly restrictive but does work for my symptoms. I wouldn't be strict all the time on it or you will lose tolerance to those foods. Just cut out or cut down on your worst foods and try to still eat the other fodmaps.
Hi I've cut out all onion related products ie garlic, all onions. Onion powder and garlic powder which is in most processed foods including soups etc etc. I eat no sprouts. Brown, cauliflower or cabbage. I eat nothing processed. I have to make my own gravy from scratch without onion of course as all stock cubes have onion powder in them.
In fact I never eat out and when I go away I take meals with me. It's not easy. ...
Have you tried the low fodmap stock cubes from the low Fodmap Market website? They do a few brands now without onion and garlic - Massels and Bays Kitchen.
I tried their stock in jars but wasn't keen I'll have a go with their stock cubes thanks
All good advice. Although it seems unhealthy I find I can tolerate fish and chips, steak and veg and there is usually a vegan or vegetarian salad I can handle. I take my favourite oat bars and bananas and nuts with me in case there is nothing suitable.
As time has gone on since I embarked on the low fodmap food regime I find that maybe it is better to keep to no more than 3 veg a day when IBS d/urgent bms.
Hi Willco28. When I have a flare my go to is always bland foods such as porridge, toast, rice, plain crackers, eggs, fish etc - a bit like the old fashioned invalid diet. My tummy always seems to just not want all the acidic stuff like tomatoes, fruit or highly seasoned foods such as curry or even strong cheese. Too much fat is also a no go, everything has to be dry. To help I usually take probiotics, usually in a food form such as in yoghurt and I also like the Yakult drinks. I try to have some fermented things too like sauerkraut or kefir to help get back to normal. One of the things I always find I’m able to take is miso soup as I often get salt cravings when I’m having a flare and being seaweed this seems to help. One other thing I try not to do is eat out. Restaurant foods are always too rich and indigestible for me at these times, as are alcoholic drinks. If I’m going out I eat before and stick to plain water or tea. Peppermint tea is good, (although not everyone can drink it) but chamomile is soothing too. It’s all a bit trial and error. Test one thing at a time and see if it suits you. Good luck!
I’m a vegetarian (an elimination diet would be intolerable for me) so it’s a case of trying to avoid rather than eliminate.
You could do all that and then be dealing with stress that’s possibly the main trigger in the first place.
My ‘intolerance’ and flare ups started after Covid infection (3rd one).
Hard to look beyond that.
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