OK Been to an NHS dietician AGAIN they have absolutely no idea how to help me. The only suggestions they gave me were go caffeine free, alcohol reduce, have small low fat meals etc. My IBS is still here! Thats it then I have nothing more for you?? I am cutting things out of my diet, its not working, and I don't know what else to try! I feel deprived, fed up, uneasy when eating out, and generally unsure who to ask for help? I have been referred again to a fodmap dietitian, but to be honest I can't eat half of the low fodmap foods, so what do you do?
Is there anywhere to go for nutrition/diet adv... - IBS Network
Is there anywhere to go for nutrition/diet advice that doesn't cost a fortune?
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huggit
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Hello
Look into the fodmap diet, it is designed to help people with ibs. There is a healthy eating forum on here that might be able to help you too.
huggit• in reply to
Thank you but it does seem that the fodmap diet doesn't quite work for me as I can't eat the low fodmap foods, there is a long list of them that I can't have.
• in reply tohuggit
Ok, that's tricky then.
Do you know if there are other things besides food that trigger your symptoms?
huggit• in reply to
No not sure really, sometimes if I get nervous but not always.
• in reply tohuggit
Mine was triggered mainly by anxiety I think, some foods too.
Another thing that helped was exercise.
Have you tried probiotics?
huggit• in reply to
just tried alflorex, but made my tummy worse have tried others as well, trouble is people say keep going with them, but the symptoms I get really get in the way of my life and work if you know what I mean.
• in reply tohuggit
Ok...they don't work for everyone, but you need to try them for at least three weeks to see if they work for you.
What else have you tried?
The fodmap diet has helped me quite a bit. I am curious which foods, in general, you can't eat on the fodmap diet. Eating out is difficult for me too. As Jimmy says, finding the right diet is very tricky.
I can't eat oats, eggs, yogurt, fruit, green beans, gluten free bread, rice cakes the list goes on.........
Hey Huggit. You sound a little like me back in September - I got to the point where all k could eat was Walkers Ready Salted crisps, chicken, rice and bananas if I didn't want to be taking 3-4 Immodium to leave the house.
FODMAP: you said you can't eat oats, yoghurt, GF Bread... Is that because the York Test results said to avoid? You know sometimes reactions happen due to a combo of foods... which is why FODMAP isolates those key irritants. Ispent £300 on the York Test, looking at the iG levels... And it's a load of Hocus Pocus IMO. If I'd followed York Test, I would have been eating dust and water - it said I was allergic to practically everything. Not sure where you live, but I had my FODMAP specialist appointment via Skype with a place no where near, as if heard it was the best. See if you can get with the West Berkshire team. They seem to be the centre of excellence in the UK, outside of Guys and st Thomas'. Don't think I'm a FODMAP evangelist, as it only worked for me for 18 weeks, then my symptoms came back. But I had over 4 months of D-free bliss. Plus I lost 8kg (I'm overweight so this was a good thing).
Have you asked your doc to try a low dose of Amytriptaline or Sertraline? I also had some good results with those. But whatever you do try, don't try changing too many things at once. Although it's incredibly difficult to carry on with normal life (I almost had to quit working at one point), try not to flip flop between different solutions.
I've ended up after 12 years of D, on Creon and Colestagel tablets with 50mg of Sertraline and I've now been almost 100% D-free for 6 months. Turns out my pancreas and gallbladder were the problem, not my bowel - which is why all my endoscopy results were inconclusive.
If you can, have a proper go at the FODMAP, even trying foods you don't think you can have - maybe even take a week's annual leave with a project to do at home so you can try it without the worry of accidents.
Keep your chin up, there will be a solution somewhere. Sending you virtual positive vibes 
HI thank you so much for your kind considered reply. I was thinking of going on amtriptaline, but I do remember trying it before and I couldn't sleep! So I went off it. Do you know I was wondering about my pancreas and gallbladder as I don't seem to tolerate fat well. I can't eat the yogurt, oats and eggs etc as they have a really bad effect on me. I have decided not to bother with gluten free anymore, as I am not sure whether I feel much better after a couple of weeks off gluten. But like you say I keep swapping things around, like I tried Alflorex for a few days, and go worse, been back on vitamin D tablets for a few days and felt worse. Its almost as if everything I try makes me worse, so I get back to square one! I am currently waiting for a fodmap appointment, goodness knows how long that will take, but do you know I am exhausted with trying things. Going on holiday next week, and to be honest not looking forward to it like I should, I get so worried about not being able to find a toilet! Too much information I know lol Anyway thank you, I suppose I must keep going, with what I don't know , popped 4 imodiums this morning as off shopping! keep smiling
If you've got smelly, fatty, orange/yellow BMs... I'd ask the doctor for referral to gastro team at your local hospital r.e. pancreas/gallbladder. It's very specific in symptoms so you'll know. Good luck.
• in reply toJohnaB
Hi JohnaB,I paid £300 for the York test, and yes it's all a con (expensive one too). My GP ruled out coeliac ,gave me mebeverine and said I had IBS caused with anxiety. I contacted Yorktest people and asked for a refund.......they never replied.!!?....
I am now Ok after avoiding lactose,not on medication 99% of the time but keep buscopan handy just in case. I thought your advice was spot on for huggit. Wishing you well!
JohnaB• in reply to
Aaawwww glad you found a solution. We're an individual bunch us Bowl'ers eh? Haha.
My York Test was many moons ago. When I had the dietician consultation afterwards, even she struggled to see how I could be allergic to it all. I'd persue a refund... Although they'll just say the immunoglobin levels speak for themselves. Good luck!
• in reply toJohnaB
Thanks JohnaB, I did the Yorktest about 18 months ago,there was only yeast listed "in the red" and borderline for wheat, rye and gluten.I also had a 30 minute consultation over the phone,was told I could eat oats but avoid other grain....in fact go gluten free for 3 months.I did and still had very unscheduled bowel movements etc. afterwards I saw my GP, that was when he tested me for gluten intolerance which was negative. About 3 months ago I took it upon myself to eliminate lactose,what a difference this made,but was still getting the old symptoms along with painful achey gut occasionally. So I eliminated anything containing oats and voila!!
No more trouble, I make all my food from scratch at home,if I eat anything when I'm out that I've not prepared myself ...I suffer! I do get Anxiety bowel stuff but not very often and am controlling that,by coming on here and looking at replies such as yours.Cheers JohnaB and again thank you.
• in reply to
JohnsB, Forgot to mention a book I refer to called The complete Guide to Food Allergy and Intolerance. by Prof.Jonathan Brostoff and Linda Gamlin, its very informative. x
Hello huggit. I see from a previous post you had numerous blood tests taken, that came back normal. Did the Doctor check your B12 level? I know in my own case that I had what many would say was IBS. Over the years I found more and more foods were causing more and more discomfort and IBS symptoms. Eventually, after watching a TV programme where a doctor stays with his patient. I suspected a lack of B12 so had myself tested. It was low. Since then I have (because of poorly educated doctors) been self injecting 1 mg of B12 every other day. After 3 months I can now eat anything without any IBS symptoms at all. I know it all sounds far fetched, but I was at my Witt's end, and it was affecting every part of my life, with doctors beginning to look at me as a problem that would not go away. I recently went for a new prescription for an appliance, and said I have been self injecting B12 and never felt better, she arranged a great array of blood tests ( 7 test tubes in total) all of which came back fine and better than previous tests. Which also proved that as I told her b12 is not toxic. I am 61 and now as fit as a flea. Hope this helps you and many others
Hi, mine is caused by fibre. To start with I was told to only eat root vegetable ( very boring they all taste the same!) I was also told to only have 3 portions of fruit and veg a day. This helps also not to overload my stomach. This seems to work most of the time. As you didn't say what triggers it, I'm not sure if this will work, but everything is worth a try, I always feel. Good luck.
Hi yes I think fibre is really bad for me, so what do you have fruit and veg wise if you don't mind me asking? This would really help me.
I don't mind at all, firstly, in case you don't know, but I'm sure you do! A portion of fruit and veg is 60grams! about 4 asparagus, it's not much. I have usually just 2 portions with a meal, carrots , parsnips, asparagus, 1 floret if it's broccoli, as that can be dodgy. Pea's not too good, but a few mange tout seem ok. Also I take the skin off of courgette, tomato's and cucumber.
Onions is a complete NO NO, plus anything that has had onions cooked with it! I'm running to the loo within 2 hours. When eating out most gravy and lots of other food has onion, this one is a real pest. But I would rather feel well than risk it! I hope this perhaps might help. Also keep a food diary, which makes it easier if you have a reaction a couple of days later.
Thank you that's great I don't know whether to space out three vegetables throughout the day, as having perhaps 2 together is too much for my sensitive stomach lol. I am definitely going to try anyway. I have just been looking on a website that shows how we used to eat in the 60's and 70's. Not much vegetables on their menus, and people seemed thinner then. So maybe vegetables aren't all they are cracked up to be .....who knows thanks so much
I think definitely space out the veggies, and not more than three. Also, my dietician says to eat only sour dough bread. I love it, and is available in the US, in sliced loaves just like regular white bread.
My pleasure, yes good idea to spread the load with the veg. I suggest you weigh the 60 grams per portion with various veg, as you might be surprised how little you can have. Good luck, let me know how it goes.
• in reply tohuggit
Just an added thought that ive not read mentioned...cows milk ?...i just recently discovered cows milk kicks off my ibs big time iv swapped for soy milk i only have milk in a cup of tea but seems to of made a difference cutting out cows milk...dont know if this is of use to u but thought id mention it...i also agree on the veg i dont eat much veg anymore an this also has minimised symptoms ..good luck xx
Hi,
Neither low fibre nor fodmap worked for my IBS-D.
Have a read on here:
After following Shann's advice for 3 months I'm much better. I was extremely apprehensive at first as the eating advice is the opposite of what I was advised by a gastroenterologist but it's working for me.
I heard about Chuckling Goat on here by the way.
Thank you very much, I will take a look anything is worth a try!
Hi Huggit
I had ( and still have ) exactly the same problems like you. As usual the doctors didn’t have a solution ....Gastroenterology is somehow still in the Middle Ages .... Im not blaming the doctors for it. I’ve been for more than 2 years on the low Fodmap diet. Initially after 7 months I recovered .... but not so sure whether it had anything to do with this diet. Then it came back with a vengeance. I lost 2 1/2 stone and could eat close to nothing. I’m now not great but slightly better I e I have some good days. I discovered like you that many things the Fodmap diet allows were very bad for me like oats and eggs and lots of other stuff....Like you I wonder whether we’ve all been brainwashed to eat the wrong things. Bottom line : I also found out the hard way that fiber can be big trouble . I think all the ‘fiber and grain’ mania has been marketing by companies who want to sell their fiber products. Since I seriously reduced the insoluble fiber I improved a bit. For decades I’ve been eating like crazy fiber, vegetables, fruit, olive oil. Why then did I get so ill ? I’m now eating a little veg like jv50plus does ...like a little carrots, parsnips, courgettes, asparagus . That seems not too bad . I also wonder what people ate in the 60ies and 70ies? Huggit .... can you tell me what they ate ? Maybe we got so ill by following all these diet fads we are told to follow by the media..... I used to eat also lots and lots of olive oil like crazy .... I also wonder whether that was such a good idea .... I’m now eating tiny amounts of butter instead and it works better. I think we have to find our own way .... that will help us. Eventually we all will get better .... by helping each other and comparing our experience with various foods
Hi Thank you for your great reply, I am really being encouraged by you and lots of other people, by ideas and it is giving me inspiration to carry on. I feel like somedays I am alone in the dark with this, and no one understands. But on here over the last couple of days I am so blown away with the empathy and kindness of people! In the 60s and 70s (only looked on the internet) They ate more stodgy food, like pie and mash and it looks like one vegetable, probably that was in season. They often seem to have a fruit pie for dessert (cooked fruit) and not a lot of wholemeal food etc. I am going to try to eat like this. Fibre upsets me, and I think someone put on here about the dangers of bran, when I was 17 ish (which is a longish time ago) I started dieting, and there was a high fibre craze, I remember eating whole packets of bran biscuits (this gave me severe problems, and probably contributed to me failing some exams) as my stomach rebelled completely. I think this may be were it all started for me. I went from one diet to another, and up to about 2 weeks ago was dieting, but then falling of the wagon and binge eating really I suppose. 2 weeks ago I said that's it enough is enough, I am not going to even weigh myself, I am just going to eat as well as I can, and see what happens. So maybe this will help me with IBS? I have not hit the chocolate cupboard once in 2 weeks which is good for me! Please do keep in touch, it is good to hear from people so similar
Oh Huggit, thanks so much for this interesting reply. That makes me think a lot. After reading your post I wonder whether all these fad diets and marketing campaigns that started in those days (coming from the US of course) ... whether all this really caused the IBS to be so much on the increase. I’ve been reading that gut problems are big time on the increase and seem mainly to be in Western Countries. I’ve also been constantly all my life thinking about ‘what to eat’ (being influenced by media without realising) and how to make sure I’m not gaining weight etc. It’s been mainly the high fiber ( in order to be ‘healthy’ ) and then over and over again we’re always told we MUST eat a Mediterranean Diet and lots and lots of OLIVE OIL!! I got yesterday an advertising email telling me to invest in ‘Olive Oil’ shares...??? Obviously Olive Oil is big money . I never thought of this. Kellogg’s is also big money. We’ve probably been manipulated for decades without realising it. And then the fear that ‘if we don’t eat this and that ... we might get ill’. I ate high fiber every day even though I didn’t even like the taste of it. I also ate basically nothing but fruit and lots and lots exotic fruit and vegetables and lots and lots of olive oil and lots and lots of eggs and lots of oats, also hoping that I will stay slim this way and be healthy, very healthy. Initially I only had to go many many times - directly after eating these eggs, fruits, veg and olive oil - to the toilet but at that time I had no pain. So I didn’t worry about this and carried on eating like this. It seemed nice because all these fruits 🍉 and vegetables 🌽 were so colourful and 60ies, 70ies foods look boring. But since the last 6-7 years life has been hell, I’ve been so ill and had no life. Now I really wonder whether all these diet fads had a lot to do with my stomach/gut problems
So I also wonder about the ‘Five a Day’ . Where does this come from because Ive probably heard it a thousand times. Is that also a diet fad idea or a marketing thing ? If that causes problems for so many people how can it be any good ? Huggit what do you typically eat for breakfast, lunch, dinner ? Regarding the Fodmap diet I found initially that it did reduce the bloating and flatulence but it took 7 months. However I read a lot about this subject: There are also unintentional problems caused by the low Fodmap Diet : as a restrictive diet (cutting out prebiotic foods) it carries the risk of nutritional inadequacy as it potentially induces an unfavourable gut microbiota which may have an impact on your health: it reduces markedly health-promoting gut bacteria concentration = Bifidobacteria is rapidly reduced and instead undesirable species of bacteria like ‘Clostridium’ are increased after the Fodmap Diet . Therefore the latest view is : - in order to counter this undesirable effect - one should take Probiotics at the same time as doing the Low Fodmap Diet. The problem being that so many people like myself as well seem to feel so much worse from Probiotics. For me the thing with Probiotics is this : We don’t know yet which ones we would benefit from as we are only in the beginning of this research. For me : it’s a shot in the dark like hit or miss with Probiotics. Maybe in 20 years we will know more but at present the Probiotics subject is not much more than guess work and assumptions. The probiotics all all different, different microbacteria strains, some liquid, some tablet form, some in milk products. Who knows ?? I feel l like a Guinea pig 🐷
I also read that another concern may be that after the reintroduction of higher Fodmap foods the gut may have a much more increased negative reaction to those foods compared to how it was before the start of the Fodmap Diet.
Hi I just wondered have you tried taking silicolgel, I'm trying it again on a once a day basis to start with. I had some success when I tried it previously, but was trying lots all at the same time so I'm just trying this on its own now. Maybe worth a try for you
yes I did was ok for a couple of days, then I had a terrible reaction to it, one that I would not like to repeat. Never again!! But thank you for the suggestion.
Huggit, I couldn’t agree more with your way of doing things like ‘never again’. You’ve tried enough things. When you get a terrible reaction to something .... why on earth would you want to prolong the agony? The idea of ‘sticking it out for several weeks’ or the idea of the ‘die-off and all the bad bacteria coming out..’. It almost made me laugh when I heard this first many years ago. It’s a nice thing to say when something just doesn’t work. I don’t believe in it. That’s what shops say when they want you to buy a larger quantity of something. You ARE careful not wanting to upset your stomach/guts even more. This is why I am convinced you WILL get better much sooner. You’re also doing it in an intelligent way : you analyse everything before taking it. Only YOU can analyse this : everybody reacts in a different way. It just takes time, and needs patience and observation (tough) but you WILL get better -I know you will - because you’re doing it the right way!
Hey
Ive had ibs for years and after a real bad flare that lasted over a month and losing a stone i had a sibo/ candida test ( private they dont do them nhs) as they dont really recognise it? He explained that most people who have ibs have either a unknown intolerance or a bad stomach bacteria either from eating bad or lots of meds or antibiotics! Which i had taken a big dose of high strength antibiotics about month before mine got really bad.
I was so ill i couldnt keep anything in.
I eventually did a 6 week detox. No sugar, no processed foods, no gluten, no dairy NO YEAST!!! Main one. I lived on veg, and chicken or turkey! Cous cous( gluten free)
It was so hard but after six weeks i could eat and i had put on 5lbs.
I felt so good after the detox i kept to the no gluten and dairy and since i have had one flare and that coz someone put onions in my dinner which i cannot eat.
Other all that i have kept weight down. Hair and nails are glossy and i feel great.
So mayb a detox may help u?
I also take probiotics, digestives enzymes, peppermint oil capsules to keep that gut flora healthy
They help with my digestion
Thank you for this, sounds hard, and probiotics don't really suit me. Do you know what I am really afraid to try anything new like this, as it seems to give me worse symptoms.
Yes it is something ur body needs
To get used to as the gastro specialist explained to me that ur body will fight it and u will get what they call “ die off” which is all the bacteria coming out in 💩basically! Also if ur a massive sugar addict which i was ur have a sugar come down. Which was a light headache and brain fog about 2 week.
BUT ( i know u prob thinking wow that sounds horrid) it only 6 WEEKS? Thats nothing. Then what happened to me is my body got so used to not eating all that after 3-4 weeks i didnt care!
Ive never gone back to any of it...
Ive seen how it changed my body in just 6 weeks and 18 months down line im still clean eating.
I get no migraines anymore, my periods are better, i have not one bit of celluite and im 44, i look about 10 years younger and I HAVE NO IBS SYMPTOMS?
It a case of u either stick it out and try it or dont but im so glad i did.
I dont miss out on no foods they do alot of dairy free and gluten free stuff now adays and i eat most fruit and veg . Soya milk. No processed meats or foods.
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