FODMAP diet long-term?

I've been on a low-FODMAP diet now for 6 months, after it was suggested to me by my GP, which has helped massively with my IBS and I feel so much better. I've tried reintroducing foods but I seem to get symptoms every time! Surely I can't be intolerant to all FODMAPs?! I have had to cut out lactose completely as this definitely seems to be a problem for me. I've been trying to get my GP to give me a lactose test but he kept forgetting and now he's finally researched it I apparently have to be referred to a gastroenterologist for which the waiting list is 3 months. By then I'll be back at uni in Scotland (I live in England) and so I'm going to have to wait until September to see my doctor in Scotland to be referred up there.

Although I love how much this diet has helped me, having been on it so long, I am finding it really difficult to stick to it because it's so complicated. I'm not a fussy eater and I hate having to say to people that I can't eat this and I can't eat that, and I tend to avoid going out for dinner at all costs. It's also really expensive!

Has anyone else been on the FODMAP diet for a long time? And has anyone with IBS been referred to a gastroenterologist? I feel a bit pathetic getting referred, as IBS from the outside doesn't seem like a particularly major problem compared to most other gastric problems, although it did used to have a big impact on my life.

Sorry for my rambling! Just would like a bit of advice or support really because I feel like giving up and going back to eating normally again even though I know I shouldn't and it will make me ill.

Thank you for your help :)

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31 Replies

  • The fodmap is really hard to stick to. And expensive, and very limiting. Is there something you're missing? Is there onion powder in a food you're eating for example? It is hidden in a lot of things. I found I was really sensitive to onion & garlic. But once I'd found my triggers and reintroduced other foods, I could gradually reintroduce onion powder with no ill effect. I'd just say check exactly what you're eating- milk powder, whey etc hidden in ingredients. Don't give up now. The first 6 weeks are the hardest! You've done that bit. Find your triggers. Like you say- it can't be all of them!! Good luck.

  • Hi rowantree :)

    I am always very careful to look at all food labels for onion powder and whey etc.

    So can you now eat onion powder but still not onions and garlic?

  • Same here - FODMAP was really helpful but yes have to admit that sometimes I do make exceptions. I just get ready to suffer the consequences. If I'm out with friends and we have a pizza I join in....knowing that the next day I don't have to go swimming cause I would be bloated ! Otherwise I still prefer staying away from food than having all the symptoms of IBS back. It's tough....but you learn to live with it.

  • Hi there just wondering if its related to fat in the food? I have to have a very low fat diet. wishing you well.

  • Hi denvajade :)

    I know that I have always seemed to have problems with eating too much fat. Fast food has always made me ill, even when I was young, but that may have been down to MSG.

    Do you have any symptoms at all now you're on a low fat diet? Are you on the FODMAP diet as well?

  • hi again as long as i have a really low fat diet and no meat, fish and a little chicken only I am about 80-90% better, no bloating nausea or pain, but if I slip up its not nice. try it for a week and see how you go. have you any gallbladder problems?

  • Lactose could be the main problem.

    Yes you can have a pizza - ask for it without cheese - I do !!! - and get extra toppings.

    Lactose, whey powder, cream powder are in a lot of things including medication - you have to read all ingredients and avoid those products. For instance low fat mayonnnaise contains cream powder but the full fat version doesn't !! Weird eh.

    Try being completely lactose/dairy free for at least 3/4 weeks and see how you get on.

  • Hi cricketqueen :)

    Thanks for the advice! I'll definitely be ordering pizza without cheese from now on!

  • For goodness sake don't think that IBS is nothing much to make a fuss about or not to see a gastrologist,most people on this site including myself are under a gastrologist .IBS for a lot of people can be extremely debilitating .A lot of doctors have that attitude.( oh it's just IBS ) but there not the ones suffering .You have every right to see a gastrologist so don't you worry about it.Do whatever you have to do to lead a well and happy life.Good luck to you and don't give up keep your chin up.Sorry to have gone on a bit but having suffered IBS for the last 12/13 yrs I feel quite strongly about getting the help you deserve .Big HUG

  • Hi Gemini71 :)

    It's such a relief to here that I wouldn't be the only one on here to be referred! You're right about doctors, they always make me feel really bad about taking up their time.

    I'm sorry to hear that you've had it so long! Are you any better now?

    Thank you for your support!

  • Thank you I'd support anyone with IBS it's absolutely ruined my life and I'm sorry to say no better .But don't you give up and don't be put off either good luck

  • Ouch. There are so many reasons for these conditions it seems unfair at times. I avoid spices but don't get any problems with the odd mild one. Stress alone can bring it on. Also "nervous tummy". Yet I still get attacks for no apparent reason.

  • Hi fenbadger :)

    I definitely find stress a big contributor.

  • Its well worth investing some energy in seeing how you can reduce stress, deal with it or even avoid it all together. I changed my own perceptions. Some things that once seemed important no longer are. And life still goes on, and the earth still spins :)

  • I have reduced my stress massively over the last year. I did have moderate/severe depression and severe anxiety but I'm now on antidepressants and feeling amazing! :D

  • Good for you :)

  • I have recently cut out all dairy, breads and processed foods. I have also added two probiotic "gummies" to my daily vitamin and have found a huge difference to my IBS.

  • Hi :)

    Thank you for your advice! Are you seeing a dietitian at all?

    I did used to take probiotics but stopped because they contain fructooligosaccharides which are FODMAPs. I tried taking them again recently and they made me soo ill! It's really hard to find low FODMAP probiotics.

  • My first clue was that every time I ate Cheerios (pretty bland, right?) I got my pain in lower left ab, on the couch for rest of day. What's in Cheerios? Calcium carbonate!!!! Reading labels I realized even my papaya enzyme chewable tabs had calcium carbonate! Broccoli--even if I picked it out of the dish, I got severe pain. 3rd culprit: soy protein as in protein bars and cereal. (Tofu and miso OK!) Then I discovered low FODMAPs.

    Very helpful, although I haven't found calcium carbonate on any low FODMAPs. I mentioned this to my GI doctor and she was very supportive. Referred me to a dietitian whose FODMAPs list varied slightly from mine.

    I had a bad attack last night and I'm trying to figure out what I ate. Sometimes I take a chance and pay for it.

    Don't give up. You'll figure it out.

  • Hi PatV :)

    How did you know that it was definitely the Calcium carbonate in your Cheerios that was the problem? I haven't heard of Calcium carbonate being a cause of IBS, what did your dietitian say?

    Thank you for your support!

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  • Never heard of them before! Thank you!

  • Hi

    Well I get completely confused these days. My GP insisted I didn't have IBS but waiting ages to see gastro man he said I did, sent me for a lactose test ,then dietician who put me on fodmap. But I didn't quite believe it, the foods are very limiting after 6 weeks gave it up. It said I could eat grapes but I know I can't. Lactose is the sugar in dairy so you should b OK with lactose free and hard cheeses have had the lactose processed out anyway. My prob I think is sugar but there are so many diff ones and its added to everything. Dietician put me on wheat free for a month but taking wheat free gluten free bread I didn't realise had sugar added instead. Even tomatoes are full of sugar of a sort. Also there's the Australian fodmap who devised it originally and seems to have different food recommendations so u could look at that?

    But I sympathize because it is expensive and boring and I share the pizza dilemma. My gastro refuses to send me back to dietician says I can sort it out myself and as for the GP well I am just wasting their time again.

    I won't give up am now trying to go sugar free and see what happens.

  • Good luck! I hope you can find some way to sort it out soon :)

  • And yeah, I'm on the Australian FODMAP diet because I don't think many doctors in the UK are that knowledgeable about it yet so I thought I'd just follow the original research

  • Hi MJ93,

    I have been on a low-FODMAP diet for four months now. I generally felt fantastic after about three or four weeks of the six week trial period. Since adding some FODMAPS back into my diet, I definitely don't feel quite as good as I did when I was being really careful. I find that even little bits of garlic and wheat can cause me grief a couple days after I eat it...which isn't ideal.

    That said, I still feel much better than I did before the FODMAP diet. There are still those random flare-ups that can be incredibly frustrating but, overall, I feel good.

    I can still eat lactose-free dairy and butter and hard cheeses which are naturally quite low in lactose. Maybe try some of those?

    I am totally on the same page as you when it comes to not being a fussy eater and hating having to be "that girl" who is always telling people what I can and cannot eat. I have gotten used to it, though, and most people in my life have gotten used to it, too.

    Try and stay positive. Good luck and know that you're NOT ALONE!

  • I have been following the Australian version for five weeks, not had many problems (with food anyway - the rest of my life another story!). I am really phased by the re-introduction phase and have asked my GP for a dietician referral but he is worried about the cost of a trained one in FODMAP. AM hungry at the end of the day tho' and especially at a certain time of the month give in to sweet things (low FODMAP of course) from M&S. Here's hoping the success will last and come to everyone with IBS - horrible condition!

  • Hi brities, I have the Patsy Castos FODMAP diet book and read it but it confused me so much I didn't follow it. I was then referred to a dietician by my doctor; saw her a few months later and she said that her colleague was just about to start a training course on FODMAPs and should be fully trained within 6 months. She asked me to chase her if I hadn't heard within the 6 months; I chased her to only be told that the funding had been removed - I was not best impressed as, like quite a few people on here, I don't think people that have been diagnosed with IBS are listened to enough, it's like it's in our mind and not serious. Although it's not life threatening it can be extremely painful and the bloating is awful. What does worry me that people with IBS could miss sign's of other serious illnesses like cancer i.e. if I have lower stomach pain I do wonder if it is the IBS and not something else! Anyway, I digressed - I was hoping for a dietician to help me but as that didn't happen I haven't bothered following FODMAPs. I am taking Acidophulis at the moment (I have taken it before and it didn't work but I was only taking one a day then) and am taking 2 tablets at each meal so 6 tablets a day. I was reading the reviews on the Holland & Barrett website and someone had said that taking 6 a day had really helped with their IBS; they said they felt so much better.

    Sorry for the very long script but it's good to share.

    Best of luck to everyone on here and I hope that in the future the health professionals finally come up with a cure or even an easy to follow diet for IBS sufferers.

  • I have been on Low-FODMAP diet for about 4 months and has given me so much relief, that I would not even consider going back to eating the way I used to. I went to a gastroenterologist here in the USA, but he did not know anything about this diet. He just gave me a lot of over the counter fiber like Metamucil and had me eat much more fiber -- non of which worked. Yes, the diet is a bit of a challenge when eating out, but I always find a few things I can eat. One thing that also helped me a lot was giving up my coffee addiction. Although coffee is allowed on the diet --- I drank way too much and it seems to have irritated my stomach and colon. I'm drinking green tea and a lot of different herbal teas now. Seems to have helped a lot. I also eat mostly fish --- not much meat. I used to suffer with not only IBS-C but also GERD. All that is gone now.

  • on facebook group there people been on FODMAP decades, but unlike us they seem to be more tolerant to fodmaps

  • I've been on the low FODMAPS diet for 6 mths this year and 5 months last year. I was so stable I started to re-introduce foods and for 2 months last year I was fine, then gradually deteriorated. This year I'm re-introducing things slowly and starting with smaller quantities.

    I have concluded that onions, garlic etc seem to be the worst trigger for me (cramps within half an hour) so I won't be putting them back but that rules out most ready prepared food. I can cope with some lactose, but I take lactase enzyme if I'm having a lot of it. There is usually something on a restaurant menu I can eat, without the onion family. Plain meat or fish with some vegetables is usually a good option. I think the gut has to have a long stretch on low FODMAPs to recover and then a slightly more relaxed diet is possible as long as your worst triggers are avoided. It's slow, but re-introducing one thing at a time is the way to go. I haven't tried normal bread yet. Suspect that may be another no as I couldn't even cope with spelt sourdough which is meant to be low FoDMAPs in smallish amounts. Anyway, the point I am trying to make is that a longish spell on low FODMAPs to get stable, followed by some careful experimentation of your own could mean a tolerable dietary plan for the long term which isn't too unsocial.

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