I have been diagnosed with IBS after IBD and coeliac were ruled out. It has been going on for the last 5 or so years. I turned vegan initially by choice, but now my body reacts badly to dairy and eggs. I’ve also further restricted my diet to try and cope with the IBS, eg avoiding legumes/wheat/onion and garlic. Therefore I struggle to get a varied and nutritionally balanced diet.
I dropped out of work as I couldn’t cope with it and am now living at home, considering doing a university degree. I’m not sure if I will be able to manage it or not.
My IBS causes anxiety but mostly depression and feelings of hopelessness. I’ve seen various doctors to little effect. I’ve been referred to a gastroenterologist but my last GP told me I should avoid going for a colonoscopy as it’s very invasive and likely there’s no point as it’s pretty certain I have ‘just’ IBS. Medication was suggested which I’d rather avoid as it doesn’t seem like a real solution. I’m also waiting on a referral to a dietician, however I’m not sure how much use it will be. I’ve already tried the fodmap diet but found it hard being a vegan.
I’ve been using the Nerva app which has had a positive result but I’m still struggling a lot.
Any advice or recommendations about what I should do or where I can get further help as a vegan with IBS would be greatly appreciated.
Thank you
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Radhak108
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True IBS is a dysfunction, and can therefore be very variable and unpredictable. Unfortunately, food intolerances also tend to get lumped into this description, even though avoiding the food cause will likely cure the problem. I found that reducing fibre (particularly insoluble) improved my IBS for some years, but left me with a poor microbiome now that my IBS symptoms have changed (a common feature of IBS).
I would be concerned about moving onto a very restrictive diet like FODMAP because I am underweight, so I have approached it in the opposite direction, by removing individual suspect foods or introducing new foods one at a time. Some of the suspect foods are high in insoluble fibre (eg, chick peas), but I'm OK with hummus; some of the newer foods are OK in small quantities, but I find eating yoghurt, raspberries and ground almonds too often creates problems. I may have an intolerance to some foods (eg, tuna), but limiting amounts generally seems to work without compromising on variety.
There is no doubt that restricting a diet for too long (like I did with fibre) results in a changed microbiome which will take some time to recover, and make it difficult to introduce other foods (particularly complex carbohydrates). But it also seems that gradual introduction can work, though not necessarily completely and not without some residual IBS symptoms (which may not be specifically related to food).
On the medical side, doctors are trained to deal with diseases and not dysfunctions, which is why they have a problem with IBS. I would definitely see the gastroenterologist, if only to exclude any other medical conditions and, although the colonoscopy prep is unpleasant, I found the actual procedure quite OK. You might also think about a nutritionist, to advise on how best to improve variety in your diet without setting off symptoms; a probiotic might also help (I use Alflorex), as might Mebeverine and/or Buscopan (though I note your reluctance to try these but, as medication goes, they are pretty innocuous, as is Loperamide which I use on a bad day).
I've had this for 40 years, and I know how anxious and depressed it can make you, but I'm still around and cope as best I can, the main problem being frustration when a bad episode results in having to abandon plans. Unfortunately, because we're all different, it's impossible to advise on a definitive solution, but this site has plenty of members with a wealth of ideas and experience which we can all learn from.
It might be unthinkable, as you are a vegan, but I wonder if including fish in your diet might help you?
I used to be vegan prior to IBS starting up, and I found it impossible to cope with vegan proteins. I even couldn't get along with tofu any more.
I can eat nuts and nut butter in very small amounts but not enough to get sufficient protein.
I am lucky that I am OK with eggs.
But including fish was a godsend. Meat tasted horrible to me after so many years without it, but fish was good, and I find I can eat all kinds of fish happily. And it is so full of good nutrients!
I cook my fish extremely plain, only with a little salt, and water to steam it. Or I eat canned fish. I can also happily eat grilled herrings, trout, and other fish.
I have seen (online somewhere) recommended diets for vegans with IBS. But one glance at that lovely list of foods told me immediately that I knew I couldn't tolerate many of them.
I actually think it would be a good idea to see a dietician/nutritionist. So I do encourage you to go for that. There might be some help in it. I hope it works out for you?
The low Fodmap diet didn't work out really well for me either. One pro. was that I did find about 3 or 4 foods that have remained among my staples now. But a lot of low Fodmaps didn't even suit me anyway...yet oddly a number of "high" Fodmaps did !!
I expected it to work like magic for me and it didn't. I did give it a good long trial of 8 weeks.
But since then, I have discovered my own suitable foods which I can eat 90% of the time, and know what "safe" foods to rely on if I have a flare up. We live and learn. But I have now found a decent balance of nutritious foods and don't appear to have any deficiencies even though I still have a more restricted diet than most people.
Please note that a nutritionist is only trained to advise you on a healthy diet. They are NOT trained to help the sick. Only a dietician can advise anyone with an illness such as diabetes, coeliac, IBS ect ect. Doctors will not refer you to a nutritionist only a dietician. A nutritionist nearly killed me!!!Long story.
Have you tried Alforex probiotic on a 3 month trial? It has been a game changer for me and has improved my tolerance to more foods, including fibre. It has been scientifically studied for IBS. I have tried many probiotics over the years, but this one worked best for me. It may not help everyone, but is worth a punt:
If that doesn't work, maybe try saccharomyces boulardii which is a beneficial yeast. I found that one constipating, though I would try Alflorex first since it contains Bifdobacterium which helps to digest complex carbs.
Unfortunately your diet as a Vegan is very restrictive even without adding in extra foods to eliminate.
I started cutting out foods because I believed they were making me ill and it made me more paranoid about my IBS but now I’m taking a more relaxed approach.
If you genuinely think something isn’t good for you, then eliminate it for 2-3 weeks then reintroduce it and see what happens. Then try with another food/drink item.
If you’re eliminating loads of things together how do you know what’s causing your symptoms?
It may not even be something you’re ingesting.
I read that even stress itself can affect your microbiome. So in my case I could be following an elimination diet but my current stressors are probably contributing more than the food I think is aggravating my IBS.
If you don’t already take a probiotic then it’s a good way to start.
I’ve tried a few but always go back to Alflorex eventually. Less than a tenner off Amazon ( no p and p if you have a prime membership.
I also have an audio hypnotherapy tape which I have found useful.
I’m currently reading a book called Beat your IBS syndrome in 7 simple steps by Paul Jenner which is quite good.
There does not seem to be a quick fix for IBS, either medical or food related. Two things that have helped me are cutting down on hot drinks and not snacking in between meals. There are also very useful books - The Microbiome Connection by Dr Mark Pimentel & Dr Ali Rezaie and Mind Your Gut by Kate Scarlata & Dr Megan Riehl.
I’m going to order the alforex seeing as so many people have recommended it. I’ve had other thin gas recommended but I’ll try this first.
I have thought about eating fish before, and when I’m really desperate I feel like a vegan diet just won’t ever work. But I think I’ll try a probiotic first and see if I can get my system well enough to tolerate dairy and other foods again. If things still aren’t working I think I’ll have to consider a more radical change.
I would probably be willing to try it sooner, but it would really upset my partner, who is also vegetarian.
I find it hard to tell what are my food triggers, as some days one thing seems fine and another day it doesn’t. It is very hard to test individual foods as usually I’m just trying to find anything I can eat that won’t cause pain.
I definitely relate to developing food paranoia and restricting myself more and more. At the moment I’m trying to just have more variety, although it is hard to do as a vegan.
Hi Radhak108. I was about the same age as you are now when I got the diagnosis of IBS. That was quite a few years ago. I had to accept that the GP cannot give you a prescription and it will be gone. I have spent £s on this and that over the years. I do not really like taking meds as most of them cause stomach issues. I do take Lopermide if I am going out. I only need 1/2 a tablet sometimes it really is " just in case". I am not sure if you are D or C or a mixture of the two. Anxiety is a trigger for me. The best thing I found was keeping a food and symptom diary and including what was going on in my life, including monthly cycle, this highlighted the anxiety and meds I took for menstrual migraine. The other thing I did was to take things slowly if you try to change too many things to quickly you cannot work out what is causing a reaction. It is a depressing some days but try to focus on the good days. This site helps as you will always find someone who understands and you realise you are not the only one. I wish you all the best.
You've already had some great advice - I'm new to this group but it's so encouraging to see the well thought out replies and help from people. I agree with everything said so far!
I confirm the advice about medications that Superzob mentioned. I would not be able to leave the house if i didn't take my various gut-helping meds (including Loperimide, codeine, Salofalk, alverine). I have fine-tuned doses and timings over the last 3 decades, which luckily my GP seems happy to let me decide. Now, although i still daren't go far from loo for first 2-3h in the morning, I'm mostly OK after that, with top up doses during day as needed.
Also, colonoscopy worth going to have, not just for what they may or may not find, but you will get to talk to consultant, who may suggest meds/treatments that GPs/dieticians are unaware of.
I too restricted my diet for years - i'm an omnivore but love fruit and vegetables, just found that a lot of these were IBS triggers. This year, I somehow discovered that FODMAP guidance could help IBS (not sure what i thought it was about prior to that!🙄), and it mostly confirmed 'bad' foods, but also i was surprised to see lots of fruit and veg that i had been avoiding in the 'good' column. I've been trying these gradually since Jan, and have now added quite a few to my daily intake - a true revelation and my diet is so much more balanced now 😁
Hi Radhak108,I am so sorry to hear about what you are going through and empathise with you. I developed IBS-D about 10 years ago and the diarrhoea was so debilitating and unpredictable that I had to change my job to a desk job with no traveling.
I agree that the low FODMAP elimination diet is very difficult and restrictive. An abridged version that I followed revealed I was intolerant to fructose. Once I excluded it from my diet all the diarrhoea stopped.
The limited version of the FODMAP diet that my GP advised was that by keeping a food and bowel symptom diary I could try and work out was I ate the previous day that caused the symptoms. I worked out it was all fruit, especially apples, and most vegetables which all contain fructose were the culprits. The Monash University have created a list of the fructose content of foods which is helpful. Obviously this does not make for a healthy diet so I have to take a multivitamin.
This method is based on the fact that in patients who do not have an obvious cause for their IBS such as previous bowel surgery or short bowel syndrome, 1/3 have lactose malabsorption, 1/3 have fructose malabsorption and the final 1/3 cannot identify what they malabsorb. Lactose or fructose that is not absorbed into the blood via the small bowel intestine cells remains in the colon and retains water causing bloating, diarrhoea or constipation, belching, passing wind and severe stomach pain.
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