Today I met with a dietician at my local hospital. She was really helpful and understanding and suggested I follow FODMAP diet which I agreed to. It seems this is the trend now for people with digestive disorders. I was given a FODMAP (booklet copyright Guy’s and St Thomas’ NHS) with explanations, FODMAPs, instructions and nice pictures in. Looks like a real challenge! Some of the foods on the FODMAP I cannot eat anyway (some cheese, citrus, gluten free bread) so it seems like this is going to be a struggle! Tonight I am going to eat some Toblerone++ with my daughter as tomorrow I am going to start this diet. Goodness knows how I will cope with social events. I have been asked out to dinner in a few weeks and they are making gluten free stuff - I can’t possibly tell them no onions, garlic etc, etc as well.
I know there have been previous posts on FODMAPs and Nickyr’s post 'an extraordinary experience ...' refers to this too and Sassyl made some interesting points but I am not coeliac but gluten intolerant. I am interested in (a) how inconvenient it is? (b) were people able to identify the offending foods? (c) what happened if you strayed off it? The dietician seems to think I might be able to eat some of the problem foods again like bread! Has this happened to anyone following FODMAPs?
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urbangirl
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The no onions has been the biggest issue for me, but as I cook at home so much and my friends are too scared to cook for me it's not been too inconvenient. If you follow the diet strictly for 8 weeks you can then start the reintroduction one food at a time. The problems ease up then and the diet gets easier with time.
Even given the hard work, if I had to do it again I would, because the effect on my health (guts, mood, sleep, energy) has been enormous. I started to feel improvements within the first week of starting the diet.
btw. you can stay without too many ill effects! My rule is never ever ever gluten, sometimes I can get away with a bit of hard cheese, and if I have to I'll eat FODMAPs. I'll get an effect from it, so, ahem, it's not one to do when you can't access a loo for a while, but it won't kill you now and then.
I've never heard of FODMAPS. Could someone please let me know where I can get details as I'm suffering a bit right now and just going "GF" isn't helping.
You can google Sheperd Works and find the very basic stuff about the diet. There's other stuff online but I found that not to be accurate and would go so far as saying it's not helpful to follow. Your best bet is to see your doc and ask for a Dietician referral because they will have been trained in it.
The NHS info in the UK comes from Guys Hospital - it may be worth contacting them if you can't get stuff through your dietician. Online, forums have out of date info and to be honest, the diet is so restrictive and it is hard to make it nutritionally adequate without proper support.
The basic idea is that foods that have some long-chain carbs are hard to break down, and if they don't get broken down in your small intestine they travel on to your large intestine, where the bacteria live. The large intestine bacteria have a party, eat the left over carbs, produce methane and osmosis, leading to diarrhea. Sometimes the opposite can happen.
btw. have you tried going Lactose free? That was my first step and worked for years before I needed FODMAPs as well.
I agree and think that if you are doing FODMAPS its definitely worth having the support of a dietician. I spent an hour with the dietician discussing my case and she explained the FODMAPS and why it is the appropriate diet. Excellent service. The whole thing looks overwhelming and complicated and absorbing the information is time-consuming. I am assured that I will soon get the hang of it. I have to keep a food diary and document any problems that are identified with eating particular foods and return to see the dietician in a few weeks to review. I was initially surprised that she gave me this but in retrospect I think it is now seen as the way to help people with digestive problems. In my opinion I think it will help me identify the rogue foods that make me ill. Some of them are not gluten products either. Since I have been gluten free (December last year) I have felt brilliant, apart from one or two incidents when I have accidentally eaten the stuff, or other nasties. In fact my skin has improved and someone asked me if I had had Botox the other day! Although I have noticed tonight some discomfort and I had garlic and onions earlier. I would never have seen them as problem foods. So maybe there is room for improvement and FODMAPS will work for me. There is such a lot to learn.
Many dieticians have now been trained to manage the FODMAP diet. It is quite complex and you really need to have the dietician support to ensure that you do still maintain essential foods in your diet.
However it is an elimination diet. The FODMAP foods are excluded to start with and then gradually re-introduced to see if there is a reaction. If none then the item is back in your diet. This goes on until the you have managed to establish which foods cause you a problem.
just a little note on this, when reintroducing, whether you react or not you must eliminate the food again for a while before doing the next reintroduction test. Always go back to the strict diet before introducing and only introduce one at a time. After all the reintroduction tests have been done can you then put into your diet all the items that passed the reintroduction testing.
It's because with fodmaps they often talk about the 'fodmap bucket', some people can tolerate small amounts of a few days, but any more and they react. So if for example you test on bread and are okay, and then move onto testing apples while still eating bread, and you get a reaction, it'd be impossible to tell if it was the bread (too much eaten, or a delayed reaction), or the apple.
I did the reintroduction day course just before Christmas, so luckily it's still fresh in my mind
I'm following the FODMAP diet and have found it helpful. If you have a smart phone I'd recommend the app that Monash University have made (they starte the diet). It's updated with FODMAP contents of foods as they make more discoveries, for example broccoli is suitable according to the app in small amounts. It's expensive for an app, but worth it I think, and it was my dietician who recommended it.
I agree with some of the other posts. Low-fodmap diet is great for digestive issues (mainly for those with IBS, like me). I had to go via my doctor, to a gastroenterologist and then onto a dietician. I had to attend two courses (1 day each) to follow the plan.
The first day I received 2 booklets that cover the basic rules and one that covers branded foods tested in the UK (as there are testing going on in USA and Aus, but that often has different results to ours due to food differences I assume). It's a constantly changing set of foods.
The second session dealt with re-introduction of items to test to see which type of fodmap you react to, as you might find you react to some and not others. It takes a long time to do the testing as you have to be symptom free for many weeks, then introduce slowly over 3 days to see the result, then go back to being strict on the diet for a couple of weeks, then test the next thing. And yes there is a booklet for that too.
It works for me and I've found it amazing (along with taking linseed, drinking plenty, eating small regular meals at similar times each day, and some exercise), but it's not a plan you should follow without adequate guidance.
Some of the online sites and books are Aus or USA based, so the rules are a little different, so be careful of that too.
I try to follow the fodmap recommendations as I am gluten and lactose intolerant, but I still react to some of the suggested foods, I think it really is a case of trial and error. Without doubt for me it is much safer to eat freshly cooked food and not resort to buying foods in a supermarket, albeit that it states gluten or lactose free. Some of the prepared foods can really have an adverse effect on me which I assume is from all the additives used give them shelf life
Eating out can be really difficult as it is not only the food that is cooked, but also the utensils
that are used. I came back yesterday from a Spa break for 3 days and one morning I ate some fresh pineapple, only to realise that it had been prepared with a knife that had been cutting onion. Luckily for me my taste buds are so aware that I realised after the first piece I tasted.
I haven't tried reintroducing foods that I have cut out as I am too scared of making myself ill. I am OK with the foods I can eat and just have to get used to not having any of my favourite ones. . Good luck.
I first heard about the FODMAP diet on Channel 4's Food Hospital program about 18 months ago. Not long after that my IBS got so bad that I decided to give it a try. I very carefully researched the subject on the internet which I know isn't recommended, but after years of being fobbed off by doctors I knew it was pointless paying them another visit. The diet isn't easy but within days my symptoms dramatically improved. I carefully reintroduced foods & that's how I discovered that my main problem foods are gluten & onions.
I did eventually see a gastro consultant & was handed a sheet on the FODMAP diet as I was ushered out of the door. No help/advice/referral to a dietician was offered, so it's nice to hear that other people are getting support as I would have welcomed that. Even a copy of the Guys Hospital booklet would have been an improvement!
Thank you all for your advice. Day 1 was yesterday and initially I felt pretty positive about this FODMAP thing but have now plunged into complete despair. I can’t eat a lot of stuff on the list anyway so have even more restrictions and don’t really know how this will help me. I couldn’t eat dinner last night as it was so bland. I struggled to find something to eat for lunch. Breakfast is always fine. I don’t seem to have any creativity for making nice food any more. I was hungry most of the day. Does anyone know if you can eat Helmans mayonnaise on FODMAPS and do you know if garlic oil is okay? Interestingly the recipes from the hospital say you can use onions but remove them with a slotted spoon. I know this is very contentious and is not considered proper. My problem is that I have always been a fussy eater and being restricted in foods doesn’t help. It is also very difficult for my family to put up with this.
I remember feeling utter despair when I first started so I do understand what you're going through. I became obsessed with food - or rather the lack of it because I couldn't work out what I could eat - for the first few weeks. More than a year on, I'm cooking more creatively than I've ever done & becoming more adept at GF baking, too.
Lunches for me now tend to revolve around a baked potato with butter if I'm at home or if I'm working, a homemade potato salad (in Hellmans mayo, in fact, so I assume it's ok!) to which I'll add some chicken or ham.
I know it's hard but you owe it to yourself to stick with it, at least for a few weeks. Fingers crossed it helps you as much as it's helped others.
gfmum you are so right - this constant obsession with food or lack of it freaked me yesterday and I was hungry today too. But today our family worked out some menus for the week. I think that planning is so important. And tonight I had the best dinner I have had for ages without onion and garlic too! But I am sceptical about this FODMAP and the jury is out for me. I know it has worked for others and I would not want to undermine this but right now I guess I need a lot of convincing. I will give it a decent try. Thank you for your support it helps!
There's some really good advice here especially about getting the support of a dietician.
When cutting gluten didn't sort everything out, I looked at FODMAPS online but was initially put off just by the fact capsicum was on the OK list - I can safely say they go through me undigested! Anyway, consequently I kind of put that on the backburner until the time other tests are out the way and I might then see a dietician, there's no way I'd do it on my own.
Urbangirl, I felt for you when I read your comment about your family - lets put it this way, I feel more than ever that I have strong marriage (even though I know he gets really annoyed, I know he's also worried) it is really tough for those close to you. Sorry I can't answer your questions.
Thank you Sonianin for this. I think I feel guilty for imposing this on my family. Some of them don't believe my problems. Neither do some of my friends they think it is psychological and irritating. Not being organised makes you feel chaotic, overwhelmed and despondent. Today was good but I'm not sure this FODMAP is for me. Might blog on it later on!
Hi Urbangirl.....you don't mention the symptoms you were experiencing but if like me it was pretty extreme diarrhoea, bloating etc I would really urge you to give the diet a good try....in my Coeliac journey it has been the single most helpful thing I've done....and still do.
I was having absolutely terrible symptoms about 2.5 years ago when I was 6 months into my GFD...I was up all night on the loo 4/5 times a week, being sick in the toilet at work etc. I was sent to 4 dieticians who were really not helpful and would only look for gluten in my diet which I knew wasn't there. I asked one of them at the time about fructose intolerance as I'd seen something about it in my own research and she said she'd never heard of it so I stopped going down that route. In the end I got so desperate I wrote to a leading Coealic researcher in Australia and he sent me one line back - look up FODMAPS. I did and once I got my head around it threw myself in with 100% avoidance of the list recommended by Sue Shepherd. Literally within days things started to improve, within a couple of weeks the night time diarrhoea nightmare stopped, it literally changed my life. I continued with the strict avoidance (onion is absolutely forbidden in any form including strained, oil etc) for about 6 months and got pretty much to a point of no symptoms. At that point I started reintroducing (a bit haphazardly...just a bit of apple here and onion/garlic there) ...and was fine for a while but as I got a bit blase i started getting the odd symptom again and then it started to get worse. Fortunately this time I knew the reason and figure that as I still have damage to my intestines I need to stick pretty closely to it. Now I manage to have small amounts of some of the foods but watch for the total load and I seem to be ok
Hope this helps....hopefully for you it would only need to be a short term thing, seems most people reintroduce quite successfully as long as they are careful not to overdo it
Thanks Nicky I am hoping it is going to be a short term thing too! I am on Day 5 and already struggling about what to have to eat and am skipping meals. During this process I have discovered however, that I cannot eat eggs. I would never have guessed it. Is this meant to happen that you discover things you can't eat before you reach the end of the 8 weeks?
I went to Sainsbury when I started and stood at the fruit and veg aisle thinking I can't eat anything in this shop. Completely lost. Then I thought, hold on, I've been here before with coeliac, and I manage that ok now. Like coeliac, it DOES get easier with time. I refuse to be beaten!
I started a recipe blog last year with some tasty food for FODMAPs. Not all are for everyone - I seem to follow so many diets (also hypoglycemic and have to avoid all forms of sugar, including fruit!) that I do chop and change and cheat a little. I hope you can find something useful on it.
I've got a nice curry I keep meaning to put on the site as well now, and some other bits and bobs.
As an onion replacement I was recommended Asafetida (in the spice rack). It has an odd onion-ish taste but don't use too much, it's very powerful stuff!
Sassy thanks for this. I had a look at your blog. It is really helpful and I need to make time to sit down and work out some recipes in the very near future. Your blog will inspire me and thanks for Asafetida recommendation.
I saw the dietitian at St Thomas's a year ago and she was heavily pushing the FODMAP diet. However in the time I had been waiting for the appointment I had already started a g/f diet.
I'd seen a great improvement and was already struggling finding things to eat, so I decided against a strict FODMAP diet at that point. I discussed the diet with her and I already rarely ate most of the restricted foods. Also, my symptoms occurred much faster than the FODMAP theory predicted (like within an hour) - so we didn't really see eye to eye. I did avoid onions, garlic, mushrooms and peas for a while and concluded they 'might' give me wind, but weren't my main problem.
I have read that many people do benefit from the FODMAP diet, particularly if they haven't been able to pin down what causes their symptoms. I'd probably have gone on it if I hadn't found out that gluten seemed to be my main problem.
upnabout I thought I had identified my problem was gluten but it seems the list is growing by the day! And this is for the unrestricted food. FODMAPS seems to be the prescribed way forward for dieticians. I think it is difficult to discuss different points of view with the professionals sometimes. I did want to put forward my point of view to the dietician but despite her very helpful presentation and time she gave to me I think she had an agenda and felt that she would say words to the effect of 'well this is my advice take it or leave it.' Besides this has all happened very quickly I was diagnosed at the beginning of December and just beginning to understand about gluten intolerance. I do consider myself very lucky though as some people have said they had not advice. So I am diligently filling in my diary and noting any symptoms.
Being on the Fodmap diet seems hard at first but remember it's only for 3-4. Weeks at first then you start to re introduce the other foods slowly to see what you can & can't tolerate. I am on the full FODmAP diet & the longer you are on it the more familiar you become with the choice of food you can eat. Sometime it's easier to say go without gravy if you are at a friends house for dinner & you know it's not g/f & has onions in it.... Or you can go to a restaurant & there is always a steak but have it without the pepper sauce....it's all about adjustments. I find I will invite people to my place for a meal rather then put them out to buy G/f just for me. And I will give them g/f food...most the time they don't know the difference. You just have to read label until you become savvy.....but we can all make mistakes like I did the other day & thought I could eat kale....damn a day in the loo........live & learn haha
Barina thanks for this. I can't believe how time has flown by since I posted this question. FODMAPS has become part of my life. It was a really helpful thing to do as I identified dodgy food. What is interesting though is some foods I couldn't eat then I can eat now ie mangoes. I now have an IBS diagnosis so it is so good to know what foods irritate me. One other thing - I think doing FODMAPS has helped my credibility with my doctors because I can identify problem foods so we can move on to the next stage rather than discuss what I can and can't eat. My friends have become very skilled at making me delicious meals and I have eaten out loads of times in the UK, Italy, Albania and France. I used to be scared but now I am more confident, if I am unsure I don't eat it and I have found on the whole that staff are so helpful - especially in France and Italy. There is usually something on the menu I can eat though it is disappointing to discover my choice contains gluten and I have to eat something else. On occasions it is a bit upsetting to have to sit and watch my companions eat French or Italian bread, or lovely puddings but there we are! Going through the initial stages of FODMAPS was difficult but I am so glad I now know what makes me ill (apart from gluten) and this has improved my quality of life no end.
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it's not been too inconvenient. If you follow the diet strictly for 8 weeks you can then start the reintroduction one food at a time. The problems ease up then and the diet gets easier with time. 
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