Anyone used the FODMAP diet?

Hi, I've been persecuted with very bad gut pain for the past six weeks or so. I've tried everything to help it and ended up going on a low-carb diet. That helped initially and I thought I'd cracked it, assuming this was definitely a wheat problem, but the pain has come back. What's more, I can't discern a pattern it its return, so I'm really floundering.

I suspect I have what would be diagnosed as IBS and I am REALLY reluctant to go to my doc with it, because I'm sure that's the label I'll get slapped on me, but I recently saw the FODMAP diet recommended for IBS sufferers and at this stage (I'm getting very reluctant to eat at all), I don't think I have much to lose.

I know it is sometimes recommended for coeliac sufferers who are still having symptoms, so I wondered if anyone here had ever tried it, and if it helped.

Looking through the list of 'bad' foods on it, I can certainly identify with things like onions and cabbage, which make me feel ill, and I've never been good with legumes and pulses either, but I can see plenty of other things, like apricots and pomegranates, that I've never been aware of having a problem with.

Anyone tried it? Is it worthwhile doing?

81 Replies

  • Hi there yes iv tried it iv had ibs for years but last year diagnosed with fibromyalgia it is very strict but once you get into it you will be fine it's amazing about foods to avoid you wouldn't expect like garlic & chilli but I found a difference I didn't have wheat or dairy and after about 6 weeks started to introduce wheat I was fine with that but not dairy made me sick so I only have almond milk and feel much better it is worth having a go and you do feel the benefit good luck 😃

  • Thanks, Willgina, that's good to know. I do have some foods I know cause me grief, but some of the others are really confusing, I think I will give it a shot before I starve to death!

  • Hi,

    Just to say my GP suggested I had IBS a few months ago...after more pain she finally sent me for a scan.This showed Gall Stones. Stop eating fat and chips was her reply.

    I have gained weight but that is my Thyroid. I haven't been able to eat things like that since I can't remember when!

    More pain and I went back to see her again, this time I had to have endoscopy ..this showed Helicobactor Pyloris and stomach ulceration. Glad I persisted with her. After the eradication treatment and following gluten free, I am feeling so very much better. Breath Test yesterday with the nurse to see if it's cleared up completely and awaiting results.

    I use fresh coconut milk on my breakfast gluten free muesli, I find that it really soothes my stomach.

    I have developed all this gut trouble because of lack of info from medical professions and ignorance by myself. I have discovered over several years I have been mistreated by the doctors. Thanks to these forums I have been enlightened and am stating to feel better than I have for a long time...

    My walking is starting to improve now also.

    Take care Chancery and don't be fobbed off.

  • Well done Mango! That's classic, isn't it - the GP didn't take the symptoms seriously and didn't know of the massive overlap between gut issues and hypoT. But that's down to British Thyroid Assoc which should be putting that info out to GPs.

  • Oh thank you for your encouraging words..they meant a lot.

  • Hi Mango. I absolutely hear you about wrong diagnosis. I had almost a mirror image of yours, but the other way round. I was diagnosed with an ulcer and treated (twice) for H. Pylori and put on PPIs, but unfortunately what I ACTUALLY had was gallstones. After a long painful attempt to heal them with ursodeoxycholic acid, I had to give in and have my gallbladder removed. But the medication and lack of correct diagnosis (then my attempt to heal it!) gave me B12 deficiency, which I think contributed to the Trigeminal Neuralgia I now suffer from. That's a diagnostic disaster zone to die for!

    I'm going to try FODMAP - I've got nothing to lose - after that, if it doesn't work, I'll have to bite the bullet and maybe get the dreaded endoscope. Really do NOT want to do that....

  • Bless you Chancery, you have gone through a lot. Sorry you had to loose your gallbladder, do you ever feel like part of a big a guinea pig in reverse? By which I mean not being given as much interest in as a guinea pig, if you know what I mean.

  • I know, Mango. Perhaps if we grew nice ginger fur and cute whiskers we might get better treatment. We're just not cute enough!

  • Hi could I ask what time of scan you were sent for? I don't see my bowel consultant until January so I want to ask for a scan (colonoscopy came back clear) but not sure which is best? I most likely have adhesions in bowel area as I have had previously had lysis of adhesions in pelvic area last March. Thanks in advance!

  • Hi, I had a camera down my throat for the H.Pylori test. It was positive and I had to have two types of anti- biotic and PPi's for a week. It was nearer 6 weeks before I could have the breath test to see if it was gone, (nurse re- arranged appointment) during which time I couldn't take anything for heartburn etc. It was negative results but still have stomach ulcer. For the gall stones it was just the type that is rolled over the tummy with gel applied. I am soon to have a scan of my thyroid gland never had one of those before. II don't know if that as helped sorry. I wish you the best though. x

  • Hi, I've tried the FODMAP diet after being put on it by a nutritionist at the hospital. Everything he said made sense, it seemed to target foods I felt I was reacting to, and from my reading it does help a lot of people. However, I found that it made me feel much worse. Within a week I had to give it up as it felt as bad as before I was diagnosed with Coeliac Disease. In desperation I tried the Specific Carbohydrate Diet (SCD). Best thing I ever did. I have just had 4 months of feeling much better. Have lost a lot of weight, as I am eating very few carbs, and no starches or grains. However, I don't feel crap all the time, reflux is virtually non existent now, pains in knee, ankle, shoulder and sides are all gone.

    I am glad I tried the FODMAP diet, as it got me where I am, and it is worth trying as it reputedly helps a lot of people. If the FODMAP diet works for you, then great. If not, I would recommend trying SCD. Hard work, but worth the effort in my case.

    Good luck.

  • Oh thank you, Erdfreak, that's great information. Just looking at the FODMAP diet (and it's not the first time I have) I can see things that just don't seem to fit me, but that SCD diet sounds like it has potential. I'm going to go look it up and then try them both, if needs be, in whatever order they seem most likely to work. You losing the pains in your feet and knees sounds VERY reassuring. I am crucified, and have been for many years, with exactly the same pains - if it could even help that, it would be great. Thanks again!

  • How many gut problems have you excluded so far by testing, Chancery?

  • By actual hard testing, I'd say two, Asp. I had H. Pylori tested (I was positive) and treated - twice. I have to say though, that I was never retested the second time to see if the H. Pylori had gone, as far as I recall, so the little blighters could still be there. As you know, though, I'd be reluctant to treat them again, unless I had a proven ulcer, since treating them gave me GERD. Other than that, gallstones is the only other hard test I've had. I did nearly get an endoscope but was spared at the last minute, and I have had my gut MRI'd at the time of the gallstones. Other than finding a benign kidney cyst, there was nothing there. Well, my guts were there, but nothing else was!

    The intelligent part of me knows I should really ask to see a gastroenterologist and that I really should have an endoscope to look at my gullet and stomach - God only knows what damage has been done down there - I have a permanent cough from oesophageal irritation, but my cowardly lion part would much rather suffer through yet more hellish restrictive diets than go through that ordeal.

    That said, this gut ache is becoming so debilitating an endoscope may become something much to be desired!

  • While you are still eating gluten a celiac test off the internet would tick another box off.

    There are other ways of treating h pylori than anti biotics but I can't remember what they are (!!) - had to check how to spell "beginning" the other day. Poor old brain.

  • Oh sorry, Asp, I'm auditioning for the village idiot role. I HAVE been tested for coeliac disease, time without number (obviously the word test didn't cue me that that would count). I was absolutely SURE I had a wheat problem so I ended up, for very weird reasons, getting about four or more tests done, including an IgG test (that was hard work). But they were all negative, negative, negative. I have partial IgA deficiency, which tends to queer coeliac tests, but I did get tested for IgG, which is supposed to circumvent that problem, but still negative. Nope, no coeliac disease here, by God.

    I've always thought, though, it would be God's sense of humour that I actually DO have it and when, one day, after being forced by curled-up agony to get an endoscopy, they discover my villi looks like freshly laid tarmacadam, and I have a hole in my oesophagus you can see the daylight through. Yep, that would be hilarious…

  • Interesting Chancery about the benign cyst on the kidney. I too have them exactly matching the nodes on my thyroid. I know you won't be interested - but the thyroid and the kidney are on the same meridian in Eastern Medicine. Could it be your body is trying to tell you something !!

    Also do you have a FT3 level yet ? Every cell in our body has a receptor for T3 - the most being in our brain and the second highest amount are in the gut. So when levels are low there is not enough to go around. So your brain is still working - but not your gut - maybe not enough T3 :-)

    I too am without a gall bladder. I was diagnosed with Crohns 42 years ago - and have endless bits and pieces chopped out ! However I do not take any medication and am feeling great - could it be the weekly B12 injections - the high doses of VitD - 50mcg of T3 daily......

  • No, on the contrary, that's very interesting, Marz. I like my science, but it's imagination that gives you the ideas to then check with science. To quote Einstein, 'Without imagination, there is no science" (or something like that!)

    I was actually completely freaked out when they told me I had a cyst. I was: "WHAT! A CYST?!!!!" But apparently they are very common, especially as you age. All us old geezers are allegedly full of them. Me, I don't think that sounds so good, but what do I know?

    But yes, very interesting, and interesting what you say about the T3. I keep thinking – call me bonkers – that there's something wrong with the nerves in my gut. It's like they are not responding. Given that I have a nerve problem in my head, and that I seem to be getting more of it, I'm sorry to say, I feel that there is something happening here that no-one's seeing, including me.

    I can only go by how I feel and how I feel is that food is going into me, but it is only being digested by what amounts to chance. Acid is in there, so it digests it. After that, nothing happens. It doesn't seem to move into my gut, or through my gut.

    I realise that this is total a$$ at some level, because I'd have a bowel blockage if nothing was moving, but it still FEELS right.

    I feel sure I read somewhere a while back that there is a nerve in your gut (vagus keeps coming to mind, and that's probably rubbish just dredged out my head) that actually senses the food and gets the motility moving, but I can't remember where I read the damn thing. I feel equally sure I read that it malfunctions in some disease or another and I can't remember what it was. It's torturing me!

    I'm trying to think of a way of putting a search together to try and track it down, but so far, no luck…

  • ...vagus nerve - one of my favourites ! It leaves the brain through the stem and then has tentacles - like an octopus - that spread out throughout the gut ! A good test to see if the vagus nerve is up to speed is to see how well you can vibrate the epiglottis in the back of your throat. There is the Uijay breath in yoga that does just that. So breathe in and on the out breath open the mouth slightly and engage the epiglottis - making quite a sound in your throat.

    If that is not productive - then practice gargling as many times a day as you can - this will stimulate the vagus nerve. Also your medication could be slowing down your motility. Are you taking loads of VitC and Magnesium - both work gently on bowel movement.

    Bet your FT3 is low too :-)

  • I finally went and read up on the vagus nerve, Marz, (I didn't want to send myself off on a wild goose chase; I'm trying to let my mind find the answer!) and I was amazed at the things that nerve does. I was also amazed at how many problems I have that fit right into its functioning, but I don't see how that helps me one iota.

    Still… gargling, that I can do, thank you.

    And I've already considered medication, to the point that I've stopped EVERYTHING. I am now Carbamazepine free – HOORAY!!!! – but not quite non-symptomatic yet. Fingers crossed though, no disaster has yet occurred. But I've also stopped my Levo and even my multivitamins. As you can see, I'm getting desperate.

    Something has to be going wrong, but what?

    P.S. I forgot your tip of Vit C, thanks for reminding me. Once I've had a few days vit & med free I'll try that.

  • Am not so sure that stopping your levo/T4 is a good idea. OK it is a storage hormone and will be available for conversion into T3 for a little time. Eventually the cupboard will be bare and you will have symptoms - not sure which ones - but all the things that you suffer with :-(

    As everyone ages their thyroid output lessens - glands do not work for ever - think ovaries ! I think everyone should be treated with a small dose at least to keep things ticking over. So many older people suffer with LOW T3 Syndrome even if they have not been diagnosed with a specific thyroid problem.

    As you know GP's adherence to the TSH test and it's useless range is keeping millions ill - and that for me includes all the old people in Nursing Homes. They will also be D and B12 deficient - all simple things to resolve and save the NHS a fortune - and so it goes on. Instead they are plied with drugs for this and that - sometime around 10 different ones a day - I read somewhere.

    So I am a simple person - I Just take T3 from OTC here for just over a euro - hubby too - and that is all. The rest of our good health has come from diet - sun - and supplements.

    Do hope you find some answers soon - but I would re-consider your position on taking T4.


  • I know you're worried for me, Marz, and I appreciate that, thank you, but stopping the levo will be very much a temporary thing if it turns out I need it and actually am hypothyroid.

    Now that the Carbamazepine has been stopped I can retest my thyroid and see what the figures are without it skewing the results. If it's still showing subclinical hypothyroidism, then I will restart Levo and stick with it till I get the dosing right – you need have no fears on that score.

    Unfortunately, it will take a while for the Carbamazepine to work its way out my system (it can actually literally take months, but I'm only going to leave it about two and retest, just to get a quick idea of what's happening). I don't want to be leaving it untreated if it turns out to be a genuine problem. I am hopeful that God and the universe will give me a break and it turns out to be a drug side effect and not a bona fide problem. At least it will be one less to deal with.

    While I have you here, have you ever heard of or read The Wahls Protocol? I literally fell over it tonight while looking at the books recommended for me. It's about autoimmune, and specifically MS, which always feels very relevant to me, since it is neurodegenerative. Let me know if you've read it.

  • No I have not read the book - but have come across it from time to time - also various articles - but can't for the life of me think where. Give it a go - nothing to lose :-)

    Your T4 is a storage hormone so should keep you going for a while - but not two months !

    Wishing you well.....

  • :-)

  • Do read 'Gut' by Giulia Enders, a German doctor/bacteriologist who's won prizes for her straightforward and very entertaining presentations and writing on the functioning of the digestive system. The book is rather funny but also talks about how bacteria are probably the not-yet-understood cause of much that happens in the digestive system. If you're not into books, you can see her on YouTube. Best wishes.

  • Many thanks for that, Hil. I've had a look at the book and downloaded a Kindle sample plus ordered it from the library – it looks very interesting indeed. I'm going to look at her Youtube videos tonight as well, so I very much appreciate the recommendation – thanks again!

  • Reading up on the gut biome/bacteria might be useful, as Hil101 has suggested.

  • Hi Penel. I've actually done a load of reading on the gut microbiome already – I find it really interesting, if not very practicable – but I'm always happy to get other recommendations – never know when you'll fall over something useful. So I've ordered the Good Gut book cited in your link from the library – very many thanks for that; I appreciate it.

  • My husband has tried this as an elimination project. He has identified wheat( gluten ) white rice, some fruit and veg as the guilty culprits! He has found he is ok if he has one of these foods a day but any more and he has problems. However he can't eat wheat products at all. X

  • Thanks, dedeottie - that's good to know. It all helps me make an informed decision!

  • What about barley and rye?

  • He hasn't tried reintroducing these yet as they contain gluten as well as being on the "high" list. He may try at some point as he misses beer. X

  • Not sure if you are addressing me or Dedeottie, here, Asp, so I'll chip in just in case. They should be out my diet completely because I'm not eating any starchy carbs, so they can't be messing anything up. My stock cubes are gluten free so I should be all clean.

  • Oops, sorry, not me, after all. Didn't think it was. What a narcissist I am....

  • Hello, sorry to hear you are having such trouble. I have a wheat allergy, a casein allergy, Celiac Disease, and IBS. I did do the fodmaps diet and I found I cannot tolerate 2 types of nuts. I did the diet because I kept getting horrible stomach aches that would cause such horrible pain I was given morphine. Can't live on that crap. I also started taking he dairy free version of culturelle probiotics and that seems to have solved my problems. Good luck, tummy trouble is the worst!

  • Oh dear, IHC, what an awful deck of cards you've been handed, you poor thing. I didn't know they did dairy free probiotics, that's really useful information, thanks!

  • The subject has been discussed on here and seems to be successful for many people.

    Perhaps put FODMAPS into the search box on here.

    Hope it works for you.

  • Thanks, Penel, I don't know why the hell I didn't think of that. Put it down to the distraction of gut ache!

  • My daughter is coeliac and vegetarian and was starting to find out intuitively that certain FODMAPS were a problem for her. Her dietician suggested trying to reduce her FODMAPS more formally, with the proviso that it is another exclusion diet. After a couple of months her bloating had disappeared and she was reintroducing foods, and eating more dairy than she had previously. Her big problem foods are onion family and apple which are widely used in many commercial foods. On the plus side foods that she has always enjoyed are fine and she is not troubled by craving sweet stuff.

  • Oh, onion and apple - I can really relate, Mrs Pepperpot. I think I am your long-lost other daughter! I couldn't eat apples or onions at all while I had gallstones. After my gallbladder was removed I was able to eat apple again, but it doesn't love me, I'll be honest. I have much better success with them cooked than raw. Onions have become a nightmare for me. It's got to the stage that the smell of them (or anything like them) makes me feel poorly.

    I'm ashamed to say I've been overriding it and telling myself I'm being ridiculous, but it's got to the stage that I just cannot stomach them, plus I've realised how stupid it is to eat something that is patently revolting my body at some level. I never have been good at listening to my body; I'm always too busy frantically reading up on 'expert' opinion, and onions are 'good for you', so I should eat them. Time I changed that, I think.

  • She used to microwave eating apples!

  • Ah, see? Definitely her sister – at least in dietary suffering!

  • I found the FODMAPS one of the most helpful diets I had ever been on. Whatsmore I have found it really helpful when I talk to the medics and say I know I cannot eat that food as I have done FODMAPS under the supervision of a dietician. They then believe me. I was surprised at what I couldn't eat and also I realised I do have some IBS stuff going on as well as gluten intolerance. However, and here is the interesting thing for me some of the food that made me ill on FODMAPS I can eat now like peaches. One of the things that helps me is understanding and knowing why things are making me ill. I have completely different symptoms to non-gluten foods that I cannot tolerate. It was so helpful to know it was real and not my imagination. Good luck!

  • Thanks, Urbangirl. I have to admit I'm not looking forward to telling my Dr I'm going to try the FODMAP diet; it's part of his Dr persona to be sceptical of everything that isn't chemotherapy. I haven't got the FODMAP book yet, I have it on order, but I think I read that you kind of try foods out, like an elimination diet, so I think that would explain why you don't react to all the same FODMAP foods. I hope so anyway, I'd hate to have to give up Sharon fruit and pomegranates forever. What a sad life that would be...

  • There's an app by the Monash university in Australian and Pinterest have great recipes.

  • Ok, Kiki, I'm really embarrassed now, but I never use my (£10) mobile, never mind run an app on it (like I could!) and I'm not on Pinterest. Such a sad Neanderthal life I have. Technically, I should be really calm and have nothing approaching IBS or gut issues. Just shows you…

  • He he. If you need recipes let me know but I didn't struggle at all. I use the green part of spring onions instead of onions and herbs instead of garlic.

  • Yes, I saw that on the list, and it's really weird, but I've always liked the green part of spring onions, but always pick out any of the white bulb. It's both comforting and depressing to realise your body has been telling you for years what to eat and what not to, but you just ignore it. Maybe if I hadn't, I wouldn't be where I am today.

  • I feel exactly the same I've had ibs for over 20 years, I wish I had read about fodmaps back then. 😕

  • That's the trouble, sometimes, with being too intellectual and not intuitive enough. I was brought up with a respect for knowledge and learning and got educated up the wazoo and back. Subsequently, as an adult, I read experts and never trust my own judgement. It's a modern affliction, partly, but I think it's also to do with how you are raised. There was too much respect in my house for 'those in authority'. What I needed was more bolshie parents who would have taught me to follow my own path.

    Still, you know what they say, you need to learn to parent yourself – better late than never…

  • Chancery I did the FODMAPS diet under supervision. An NHS dietician monitored the process which was for 8 weeks. If you can get a dietician to supervise then I strongly recommend you do this. The fact that a dietician from the hospital supervised was key in the credibility factor with the medics; and also it was helpful to me. I had appointments, telephone calls and email contact with the dietician during the 8 weeks and beyond. It was tough doing this diet but well worth it. You are right it is an elimination diet and it was difficult doing without some ingredients like onion and garlic. But what a relief to discover when I reintroduced them I can eat them! I was surprised at what made me ill though. It is worth it.

  • Oh, now that really IS interesting Urbangirl. Can I ask how you got to see a dietician? Do you have coeliac disease or some other gastric problem that got you the magic consultation? It's just that the NHS is notoriously stingy with things like that; generally it's pills, surgery or nothing.

  • Chancery I was not very well for quite a while with a variety of gastric/digestive symptoms. The doctor did some tests which were inconclusive and suggested I could stop eating gluten. As my symptoms went very quickly once I stopped eating gluten but I had/have real problems with associated products (glucose syrup and other stuff) she thinks I have coeliac, but I don't want to be tested because as far as I am concerned as long as I don't eat the nasties that is good enough for me. The doctor referred me to a dietician early on as I wanted some help with identifying which foods which could be dodgy. And I learnt I had IBS too. The dieticians promote FODMAPS for people with my sort of problems. I suppose you can ask for a referral. It seems to me a very economic use of resources. Besides I understand there are other ailments that are exacerbated by eating gluten. Sometimes the doctors are pleased to be helped along.

  • Thanks, that's really helpful. I don't push my gastric issues, because I've had other fish to fry, but I think it's long overdue, since they have been going on for many years. This current pain is going to drive me to it if I can't get to the bottom of it. At least I know now I can be referred to a dietician and do things like FODMAP diets with them. Thanks again for the info – most helpful.

  • Hi Chancery

    Your reluctance to have an endoscopy is understandable. However my view is you need hard evidence from which to make informed decisions and a first step should be determining what gut damage you currently have. If you did decide on an endoscopy you can limit your fear/discomfort by choosing to be knocked out with a weakish anaesthetic.


  • Oh hell yeah, Peter - damn right I'd be on the anaesthetic. But I have already decided that if the FODMAP and SCD (I think that's what it's called) diet recommended up above doesn't work for me, then I am screwing my courage to the sticking place and asking them to take a look inside. Enough is enough, already.

  • I found endoscopy no problem at all. Watched on screen monitor in front of me as we both had a good look inside at my lovely pink healthy looking gut :)

  • I am doing low fodmaps at the mo after getting very bloated and sore tummy after eating onions garlic leeks and the worse symptoms sweet potatoes! I also noted apples gave me indigestion. I'm 4 weeks in and my gut is so much happier.

    I'm eating kale, Spring greens, carrots, parsnips, plantain and Bok Choy. Fruits are pineapple, papaya, strawberries and raspberries but only small portions. I am also taking a probiotic.

  • I'm looking at your list of culprit foods there, Kiki, and getting sympathy pains with you! With the exception of sweet potatoes, which I don't actually like much because, oh irony, I find them too sweet, all those same things annoy my gut something awful.

    Not dead keen on the Kale or spring greens (anything even vaguely cabbagey seems to get my gut's back up) on your goodies list, but that list of fruits looks great by me. Hope they're all on the approved list!

  • They are! I am doing an elimination version of paleo called the autoimmune protocol so am very restricted but low fodmaps is temporary. I know of someone that has been able to re-introduce all the high fodmaps back in.

  • That's a very comforting result, Kiki. I dread a life with no fruit, and have a horrible fear that the FODMAPs diet will reveal I shouldn't be eating it.

  • Quite a bit of fruit it ok the key is to keep

    Portions small.

  • Yeah, truthfully, without strict discipline I'll eat fruit every fifteen minutes! Not good. I'm actually sitting with the book beside me right now; it came in for me at the library. Once I get my email done I'm going to have a look and see what I'm in for…

  • If you need any help pm me. I've been doing this for 5 weeks.

  • Oh, Kiki, thank you, because I need your help already! I just started today and already I'm confused. Specifically, about yogurt and tea. Yogurt is banned initially, as you know, so I bought soya yogurt and cream to replace it. However, having got home, I see it's made from – yep – hulled soya beans and I read that you can only drink soy milk made from "extract", not the whole beans. You try finding that – I've never seen it.

    Every single milk I checked in Morrison's today was made from whole beans so I passed and bought some Hemp milk to try. But now I'm worried, have I just bought two dairy replacements I shouldn't be eating?

    Secondly, tea. You can't drink Fennel or Camomile tea. Guess which two teas I drink most? You got it. So I'm left with peppermint. I suffer from (quite bad) GERD so peppermint can be a bit tough on that. So I went to try and find new teas to drink. I read elsewhere, not in the Peter Gibson definitive 'bible', that fruit teas made with apple pieces should be avoided. That seems fair and intelligent to me, but what about rosehips? No mention of rosehips in the book anywhere. Are they a high FODMAP food or not?

    This is particularly galling because the book asserts, "Many herbal teas and infusions" are all hunky dory. The hell they are! Anyhow, if you have the lowdown on any of that, or any suggestions for tea, I'd be really grateful.

    P.S. I do very occasionally drink green or black tea, which I like well enough, but I'm not used to it and the caffeine freaks me out. I have insomnia problems, so they're not a great idea.

  • I'm afraid I'm not much help on the milk front as I never go near soya or dairy. Tea is difficult, at home I drink red bush tea black and if I can't get it in a cafe I drink black tea or peppermint. I think I would go back to your GP and talk about low fodmaps and ask to see a gastroenterologist and/or dietician.

  • Yes, I think that's what I'm going to do. Dietician for preference, at least to start with. I've revised the diet (already!) to eliminate only the fructans and lactose, because I don't think the excess fructose items are my problem. All my problem foods are in the fructan section. I don't think lactose is a problem either, but I'm playing it safe to start with! It should at least give me some useful info, hopefully...

  • I've eliminated everything and will introduce back in one at a time with at least a week in between. I tried onion the other day in a casserole and woke in the night with belly ache 😕

  • Oh please don't say onion! Even the smell of the things is nauseating me. I used to be a big leek fan and now I can't even tolerate them. I've got a handful of foods that I'm aware of problems with and onion is right on top of the list. The work of Satan, if you ask me.

  • Hard work but I hope you (and me) will find it worth it :)

  • I have found that pure hibiscus flowers are low FODMAP and have used them, usually with other herb, fruits and flowers but not found about others yet so lots organic orange peel is now my regular tea :)

  • Hi

    My partner is lactose and soy intolerant but not coeliac and was still quite ill, even after cutting out all of that, so the specialist diagnosed IBS and put him on the FODMAP diet.

    He definitely feels better most of the time but occasionally still gets caught out and is never quite sure what it is that's made him ill.

    Like you he's now reluctant to eat, so has quite a restricted diet.

    I think it's worth a go - but remember that it is basically an elimination diet - you can get an app from Monash Uni to help you remember what is OK to eat and what is not - but the idea is that after 8 weeks you re-introduce VERY SMALL AMOUNTS of other things and then keep a record for yourself.

    Hope this helps.


  • Thanks, Sian. Yes, I'm actually glad it's an elimination diet. I hate the sweeping-ban type zealots' diet. Just looking through the lists of banned foods, I can see quite a few I'm sure I don't have a problem with. It does seem to be that certain people have certain carb' sensitivities and the FODMAP diet helps identify them. That's all good with me.

    I'm actually kind of looking forward to it. Any respite from this constant dull food-poisoning style ache will be a bloody holiday!

  • I did do FODMAPS and the diet helped with intestinal wind pain from all that fermenting veg and grain! But do go back to the doctors. They don't have to live with your symptoms. I felt the same way because they were so unhelpful and look what happened to me. At least get them to eliminate anything else. Good luck.

  • You're absolutely right, Morticia. I'm just hoping against hope I don't need to consult the doc about it. One, because I'm dreading having to see gastroenterologists and get a dreaded endoscopy, but also because I already have a long-standing condition and I'm never OUT the bloody doctors. I hate it, hate it, hate it. I'd like to never see another doctor again as long as I live, if I could.

    But what DID happen to you? Are you another victim of misdiagnosis? Or worse?

  • Hi all,

    I have recently been advised to try FODMAP - quite complicated isn't it! Helps though even though I keep making little mistakes (fruit tea bags with apple added etc). I was already vegan 14 years which greatly improved my health (after being vege for 19 years). 24 years of severe osteo-arthritis disappeared in just 8 months and is confirmed by x-ray. Asthma and eczema also disappeared which was an unexpected bonus. Dairy is the worst thing for humans to consume - it is even worse for the lives of cows and calves :(

    I lost full feeling in my right hand immediately after a physical assault and was diagnosed with MS, triggered by the assault in 2011 (where the assailant, though admitting it to police and having six witnesses willing to give testimonies, walks free as police are cosy with city council and told me they would not take to crown prosecution service as "He is a man of upstanding position in the community and you are just a woman".

    This injustice screws with my head and I still suffer with PTSD which can only be treated with money as there is no mental health support available on NHS.

    I take vegan Vit D3 daily and also good olive oil, coconut oils and now also black cumin seed oils to prevent the MS symptoms getting worse and am doing well on it. To reduce impact of MS, I also cut out wheat and all grains and legumes as these can cause leaky gut thereby crossing blood/ brain barrier further depleting myelin sheath which I do not want. Stress makes it all worse and depletes myelin sheath faster than anything. In MS it tends NOT to re-grow. I have read Dr Whals diet and agree with it up to the point that, like many Americans, she thinks we must all consume dead animals every day. I would suggest that eating animals and animal products is one of the quickest way to ill health in so many ways. Doctors call these diseases the Western lifestyle choice - diabetes, obesity, heart disease, stroke and of course, cancer.

    Not being listened to by doctors and persons in position of authority is one of the worst things. I know mindfulness would help but being ignored makes me feel worthless of spending time on myself so continue to work (voluntarily) for the good of others instead of me. I am reaching the going completely mad point though.

    Just over a year ago I started to have SIBO (though GP did not diagnose it or refer me to a specialist for 9 months). Like you cut out ALL carbs/ sugars which helped within days but hard to sustain only eating leaves and seeds and few nuts. After 9 days returned to previous diet and awful symptoms returned. GP did nothing. Like having mount Vesuvius erupting in my gut every day and especially night keeping me awake.

    Eventually managing to see a specialist in November who confirmed SIBO (gp had said nothing). Specialist referred to dietician who I saw this week (5 months later!). Dietician nice but has poor understanding of my already restricted diet.

    Felt even more confused when I read their info. She was concerned about my consuming one or two tbs pumpkin seeds a day in case they had too much fat, and coconut oil being a saturated fat even though I pointed out that it is a mono-saturate. She then 'argued' that it was solid at room temperature so therefore not good - I responded politely that it melts at 25 degrees (and that the human body is about36 degrees) and that in other countries it has never been below 25 degrees like the warm countries where it comes from.

    I had sent information in advance so she did not embarrass herself about my diet and only ask that she help me find optimum amounts of the kind of foods I can eat but she did not. I think my biggest problem with MS is cognition and trying to follow a process, a list or a recipe. I waited all that time and my questions were not answered. We have an NHS in this country yet we have to most of the work our selves if we do not want to live on drugs.

    Good luck everyone who tries to look after themselves :)

  • Vegan/vegetarian diets are known to be deficient in Vitamin B12, a shortage of which causes Vitamin B12 deficiency, a highly dangerous state leading to irreversible neurological damage. As an MS sufferer this is highly important for you. But I assume as a longstanding vegetarian/vegan you are already supplementing? Best of luck with your health.

  • I was persuaded to take supplements after resisting for number of years. I was given massive doses then next test they found it was excessively high so reduced dose but recently I found that taking B12 supplements can actually CAUSE gut/ digestion symptoms so have stopped them altogether. 'Requirement' amounts are based on what was found in the dead bodies of white meat eating men tested in 1930's ish. There is evidence to show that many of these nutrient values are incorrect for small vegan women. And vegans do NOT EXCRETE Vit B12 as meat eaters do so we do not lose it. It is not being recognised by 'establishment figures' that vegetables actually make their own B12 in exposure to the sun so there's a bit more (low fodmap food for thought :)

  • I don't think you're right about the B12 RDAs. As far as I know, and I got this from Dr Malcolm Kendrick who is big on research and generally to be trusted, that B12 was taken from 7 people (yes, only 7) who all had pernicious anaemia and it was tested in the 1940s. I don't know if they were dead or alive, but I imagine alive, as I fail to see how you could test minimum requirements on dead people. Still absolutely absurd though, but absurd in the sense that as people with PA their B12 would be through the floor so they would suggest unnaturally low figures, not high.

    And I'm not sure what you mean by vegans don't excrete B12. Everybody excretes excess levels of B12, that's just basic biology, unless you know something different about vegan biology?! Lastly, vegetables definitely don't contain B12, nor can they make it through sunlight, unless you've seen some very new study I'm not aware of? In which case I would love a link.

  • Sorry Chancery, my ms brain doesn't let me remember everything and even remember anything very much anymore. I dont remember where I learned about how the rda's were taken, but definitely from meat eating dead men. The 7 living with PA might be something different. Again I can't remember where from but vegans dont lose B12 as meat eaters do, something to do with the work which the gut has to do to break down animal flesh but cant remember what - sorry. I was pleased to hear my hosp consultant agree about sunlight fixing B12 in plants as I talked to her about it only last week - again cant remember where I first saw research few years ago mentioning mushrooms but since then saying other veg too and since seen from several sources - lots of stuff about vegan diet is kept low profile due to pressure from meat and dairy industry.

  • Ah well, we'll just have to agree to disagree, Fodmap-er. Best of luck with your health. X

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