Just wondered if other people have experienced the same as me, I have had diarrhoea for over 5 weeks now and gone through 5 boxes of Imodium and severe stomach pain with several trips to the hospital in the last month. I have not been able to work in the last month and have no idea what to eat as mostly all foods make me go to the toilet.
I had an ultrasound and a ct scan at the hospital and an endoscopy all of which they have advised is all normal. I am currently waiting for a colonoscopy as the last test.
I am now on a gluten free diet as I did a York test and it showed I was allergic to wheat and some meats.. At the moment I eat gluten free cornflakes with oat milk or rice milk and a banana.
For lunch I have gluten free rice cakes with some canned tuna in brine.
For dinner I have frozen white cod with gluten free pasta or organic white rice.
for snacks all I have is plain gluten free rice cakes.
I feel so hungry most of the time but genuinely scared to eat other foods.
Has anyone else had similar symptoms and tried other foods that they have found can be tolerated?
Thanks so much x
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Buddybella
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I wasn’t as bad as you , but it is Ibs d that I suffer with , like yourself I’ve had all the test all came back clear , I’d say say wait until you have colonoscopy and get the information from that , I’ve tried everything that I could with my limited knowledge, signed up with a dietitian about 6 weeks ago it’s most success I’ve had , she stripped my diet right back found a base starting point , everyone is different, but my base was gluten free porridge oat milk - a wrap with hard cheese/ham , banana - mashed potatoes carrots plain chicken, and we’ve been introducing new foods every 2 days but if I react it obviously slows the process down , like you I’m hungry at points in the day !it’s not an easy process a lot of ups and downs but for me by far the best progress I’ve made on my Ibs journey
Ahh thank you., I have an appointment next week about my intolerances. I recommend doing a York test to anyone to eliminate any intolerances and allergies in your diet.
Do you have dairy free cheese?
I have found that I can’t eat any types of breads at all even the gluten free ones but rice crackers I’m ok with.
I’m the same with bread just can’t tolerate it any type! Yes fine with normal hard cheese, but can’t tolerate cows milk , it’s a minefield 🙈! Good luck
Have you been prescribed any medication? It might be worth talking to your gp or gastro but they are harder to get hold of as there must be something they can give you to help calm things down xx
I haven’t been given any medication other than mebeverine and buscopan as the gastro doctor says he needs to see the conoloscopy first. I also had my calproctin test which came back at over 400 with inflammation. X
You can try anything that is considered 'low residue' until you get the results of the colonoscopy that you are yet to have. This basically includes 'white' or 'beige' foods some of what you are currently doing but it will not be quite so limiting. Online there is lots of info on low residue but long term this is not a solution to your problem! I have had 30 plus years IBS but also have IBD the past 3 years. If I am in a mini flare I have to go low residue for a couple of weeks or so. Most people with IBS or IBD should be able to tolerate the majority of foods and have a balances diet, however, there is a huge debate on this!
I hope your colonoscopy tells you one way or another if there is a problem that that then be addressed.
ahh thank you for your reply, I think that is pretty much the diet I am now. I think my sister was on the same one when she had her gallbladder removed.
First of all, I'm afraid to say that the 'York' test has no scientific basis. If you are gluten free and your symptoms have improved, you could have randomly found one of the common triggers for IBS (wheat), which contains FODMAPs. The only way to find out what you are intolerant to is a FODMAP elimination and reintroduction diet via a registered dietitian through GP referral. Everyone's food intolerances are completely unique to them, so no one person can advise another about what to eat.
Prior to trying the elimination and reintroduction diet, you could try a well studied probiotic. I know some people with IBS don't get on with them, but many others have seen great benefits since often there is a gut bacterial imbalance with IBS, with bad bugs dominating, over sensitising the gut and causing food intolerances. Alflorex worked best for me. There's also the Nerva gut directed hypnotherapy app and or meditation (lots of guided stuff online), since IBS can be made worse by stress.
When I had severe diarrhoea, I used to eat white rice and lean protein which all digest in the small intestine giving the colon a rest, but obviously this isn't sustainable long term.
However, you probably need to complete all your tests to get your final diagnosis first. Good luck.
Thank you so much for all the advice, I have to say I have found my doctors not much help at all, she said to me my case is so severe with IBS that she doesn’t know what to do other than refer me for a colonoscopy and a private gastro doctor to rule out Crohn’s disease.
I will ask her about referring me to a dietitian I don’t know why she hasn’t mentioned this yet.
She wants me to do a celiac test but obviously that means going back to eating wheat for 2 weeks which I’m dreading. X
It would be good to get the celiac test done, so at least you will know. If you are finally diagnosed with IBS and you try all the usual things, such as different probiotics, FODMAP elimination and reintroduction and you still have severe diarrhoea, you could ask for a test for BAM (bile acid malabsorption) which is a different condition and has a completely different treatment for it.
There is some evidence that people who are intolerant to wheat are not coeliac, but actually have an intolerance of fructans, so you could test negative for coeliac but still have a wheat problem.
Also, a lot of intolerances (eg lactose) are not complete and people can eat small amounts of food to which they are theoretically intolerant without significant symptoms. That might give you a bit of leeway and encouragement to reintroduce foods in small quantities.
BTW The reason you tend to get little help from doctors is that they are trained to deal with diseases; IBS is a dysfunction which tends to affect people in a wide variety of ways, and health professionals are not really equipped to deal with such a broad spectrum of symptoms for which the is no single underlying cause.
when my ibs was at its worse the diarrhoea lasted over a year the only way I could kerb it was live on plain masked potato an white boiled rice. I had loads of tests, some still ongoing, have they done a calprotectin test? Mine was very high when I had mine done and that made the colonoscopy happy. My big trigger is tap water, I can’t drink tap water unless it has been through a strong filter, we have had to have a filter put on out water, when I changed the filter last time it was bright orange. What is in it is anyone guess
Gosh a year how did you manage to work in that time? Ahh I never thought of tap water but to be honest the list is just never ending isn’t it until you know what you can and can’t eat. Yes I had the calproctin test and that came back with a reading of over 400 which is why they sent through an urgent referral for conoloscopy.
I have had to pay privately for a consultation with a gastro consultant but he can’t do much at the moment until I have the conoloscopy to rule out crohns.
hi, I have had the same condition for years but what helped me the most was going to a functional medicine dr who will give you the proper alternative natural medicine plus give you suggestion on the right foods to eat after doing a thorough blood test. Another thing that seems to help - believe it or not - Metamucil - non sugar - a teaspoonful every night before going to sleep - this seems to slow down the diarrhoea even though it’s fiber (he told me to do this). You may find after the colonoscopy that you have diverticulitis and that is the reason behind the condition. Stress triggers these episodes so find ways to relieve stress (working out and meditations) I hope that helps
Yes thank you I have heard that stress is a major factor, I do have a very anxious tummy which I don’t think helps at all. A couple of people have recommended to me alternative medicine actually.
I agree that when IBS D is going through a bad phase, then eating ANYTHING at all, can set it off, even the most plain bland "binding" foods like hard boiled eggs and white rice.
What I do when I'm going through a bad flare is just cut all foods out except white (basmati) rice, hard boiled eggs, or frozen fish like you have, and possibly a few green beans or baby spinach steamed, and white toast with just a little butter. Sometimes I can also tolerate a bit of milk or dark chocolate but I keep it to a minimum. Plain spongecake seems OK too, or the plainest biscuits like Malted milk or Rich tea,
Some are basically "unhealthy foods"! but those are my best plan when in a bad flare up, and when I come out of it, I extend my diet again.
I also tried "Tormentil" herbal tincture from A. Vogel online. That is an astringent herb which does help if my D is too bad. Not a cure, but it helps tighten my gut slightly.
But I find flare ups come on, last as long as they feel like lasting, and then pass off.
I daren't eat any fruit basically, so won't even eat bananas either in a flare up or not, and I habitually never use milk on anything. Though I find butter is OK. Cheese...dodgy. I don't use any seasonings except sea salt or Himalayan salt.
Oats in any form don't suit me at all. Make me "go" way too much.
Some people are OK with peeled boiled potatoes, but they make me "go" too.
I also find that anything wet going in comes out wet (soups etc) The drier the food is the better I cope with it in a flare up, but that might be just me.
Your rice cakes should be OK. But as I said, in a flare up any food at all can set things off at least to some extent.
Hiya ahh thanks for your reply and advice. I can’t seem to tolerate any bread of any kind and apparently allergic to egg yolk so I can’t have eggs which is a shame .
I have tried gluten free digestives and rich tea but they give me pain so I literally can’t have any snacks at all.
Bananas I only eat them really green otherwise they also give me pain.
I have gluten free and dairy free butter and cheese so I may tried that. X
Yes, I see why you can't eat eggs and can only have gluten free options.
I have also had to be a bit careful about additives in foods, that never bothered me before. So everything I have has to be very plain and simple and home cooked from scratch. For instance there are some brands of chocolate I can happily eat with no problems, and some that upset my gut, depending on things that are in that chocolate!
Can you eat Tofu? That's a great protein food. I haven't eaten it since before I got IBS, because cooked plain it's tasteless. I used to marinate and spice tofu up a bit and it was lovely, but I can't have those ingredients any more.
All the plain frozen fish steaks we can usually get from supermarket freezers are all fine for me and can often help calm my digestion,(kind of "binding" food as there's no fibre at all) So every variety, Cod, Haddock, Hake, Salmon, Plaice (if I can get that) are all fine for me personally which gives more variety. Also tinned fish is all ok for me. Each different type of fish contains different amounts of nutrients, but fish is so good for you.
Could you manage egg whites? There are recipes which just use egg whites. I know it's wasteful to dump the yolks, but if you feed wild birds, you could mix the egg yolks with some breadcrumbs, make balls out of it, maybe bake on a hardly-on oven temperature and put that out on the bird table or in a hanging feeder. That would be so good for them in the cold weather.
And egg white does contain good protein and some goodness, even if you miss out on the nutrients in the yolks
Oh I don’t know I’ve never tried tofu I’m just quite scared to try anything different at the moment until I have the conoloscopy done and hoping to get more answers.
I think I will try the egg white and have it as scrambled egg and see if I’m able to tolerate it.
Have you tried hemp protein the health shops advised me to have it I bought some today but haven’t tried it yet?
I tried steamed salmon a couple of weeks ago and ended up in hospital where the pain was so bad 😞. But I seem to be ok with cod and haddock and tinned tuna.
I haven’t tried any chocolate at all for the last month as I tried having a gluten free chocolate digestive and that was bad infact any gluten free biscuits at all I can’t have I’m not sure if it’s the sugars or what it is really..
Oh I am sorry you had such a bad reaction to the steamed salmon. Usually I am okay with it but we are all different with what upsets us.
Maybe things will be clearer for you after the colonoscopy. I hope it gives you some answers or at least points to a direction you can take, for some improvement at all.
No, I haven't tried hemp protein.
Many years ago I bought a hemp seed burger mix from the health food shop and it was tasty but way too gritty for me. so I tried it but wasn't too keen on it.
I know one thousand percent I could NOT eat that now. It was so gritty and fibery.
Is the hemp protein a drink, or powder? I would say just try a little bit and see how that goes, and if it suits you.
Maybe sugar and sweet things don't suit you at all? I am okay with sugar basically in small amounts but some people are very sensitive and it's supposed to be "bad"! so your body might reject it.
I cannot handle any artificial sweeteners though. Honey is OK for me and always was, even though it's listed as high FODMAP.
Some gluten free foods have ingredients that don't always suit some people. Or they might be high fibre, which probably will exacerbate IBS D.
Oh...and as a P.S. When you have your colonoscopy ask if they can take a sample to analyse for microscopic colitis. That won't show up in a colonoscopy but only in a sample looked at under the microscope.
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