To think I can't eat anything?

[ibsishell]

I have IBS. Have been investigated with colonoscopy and endoscopy. It's just IBS.

Since my colonoscopy I have been eating toast, crackers every day. Then either white fish with oven chips or stir fried chicken with broth and noodles. No veg or anything. My symptoms still flared on and off but less painful.

Last night had pasta. With grilled chicken, no sauce, no oil. This morning have been flaring with painful gas, nausea, reflux. So maybe too much gluten or wheat yesterday. And since I eat toast every day, maybe this is the key factor. Although I did try gluten free ten years ago with no change.

I'm open to trying it again, but I don't know what I can eat instead. Here are the other things I can't eat, or recently discovered are triggers. I may have forgotten some.

Eggs
Cheese
Any type of fruit
Nuts and seeds
Yoghurt
Red meat
Most vegetables, particularly tomatoes and peppers
Roast potatoes sometimes
Soya
Rice
Oatmeal

I don't drink alcohol or much caffeine, I have one cup of tea a day. Don't eat chocolate anymore or biscuits, crisps, anything sugary.

Previously when I tried to cut out gluten I couldn't tolerate the GF substitutes either but would literally starve without. I weigh six stone (doctor is aware). If I cut out gluten right now I'll probably die tbh. I can't tolerate meal replacement drinks either.

Doctors aren't really interested and just tell me my anxiety is the worst trigger so I need to lower stress levels and take OTC medication for symptoms. Have had full blood tests recently, nothing came up there.

Not really sure what to do. It was initially so nice to have the pasta as something different so now I feel upset it affected me. DH is also getting tired of eating the same things for dinner (he cooks as I have bad fatigue). I'm hungry now and would normally have toast but I just feel so sick.

Delurking after so long because I recognise your symptoms!
Have you ever been on holiday anywhere tropical or to the US? Australia...?
Get yourself checked out for Giardia (do the blood test as the poop one is a bit hit or miss as effing Giardia just hides). If you've been to London it's not that uncommon either because there are a million different people from everywhere and anywhere. Have you been to a "big" airport in the UK or a busy public loo in a shopping centre/ hospital? The possibilities are endless tbh.
I picked it up probably about 15 years-ish on holiday when I became intolerant to lactose. Over the last 4 years I became intolerant to soya, beans, apples, honey and then all things dairy. I was constantly bloated and with diarrhea plus a million other symptoms.
I realised it was down to what I ate so I just assumed (and was told) it was all down to intolerances and I just had to learn to live with it as I was told by so many "experts" it's one of those things "nobody knows what causes these intolerances just avoid your triggers and get on with life, it'll be forever".
The thing with Giardia is that it's hard to pick up on blood tests, you really need a specific test and for that you need to be lucky with the professional you see. I say lucky because I can't emphasise enough how bloody difficult it is to diagnose. It really comes down to whether your doctor has seen it before and it rings a bell.
Giardia is effing difficult to diagnose if you're past the initial diarrhea part or if it presents itself differently. I do remember having the runs but a lifetime ago, sometime in the summer after a holiday somewhere, how the heck was I supposed to connect the dots?! Bloody heck I can't even remember what I had for lunch last week let alone over a decade ago!
I self-diagnosed (completely by accident I might add...), it was the first time I met someone whose symptoms matched mine from A to Z even down to how long it took to find the reason, then I asked a doctor for the test and voila there it was effing "positive".
I started taking Flagyl and after a few days all my intolerances were gone as was every other thing wrong with me.
I also read somewhere (after my diagnosis) a lot of people with IBS actually have Giardia and after treatment they get "cured".
I stuffed myself with all things dairy (haaaahh the joys of milk chocolate and cheese) but then my intolerances came back so I realised the treatment wasn't 100% effective and I've only just started the second round of treament.
Good luck to you and don't give up, whatever you have, you'll get there!

@ibsishell I'm so sorry you are going through this. But it gives me some relief to know I am not crazy and you have similar experiences

Every test and scan that comes back normal has left me disappointed because I can't understand why my body is reacting like this it must be food related. I know it started with onion when I was pregnant and since then it's so bad I don't leave my house because I can't wear clothes for more than 1 hour. I have 1 loose nightgown which is fine but it's no life

Now I don't eat and I still have the problems so fuck knows. Even went for an emergency US to check my swollen ovaries then a gp checked for prolapse - nothing

Are you on any medication for GERD?
Right now I'm struggling with constipation as well and my gp has given me fybogel and a laxative twice a day which is helping with the swelling but I'm popping omeprazole like sweeties because of the attacks it's hellish!

Hope to you from one sufferer to another!! If you ever need to vent about the struggles give me a shout, I find it hard to explain IRL as my family don't get it so glad to know you're on a similar shitty journey Xx

This!

Testing for coeliac is incredibly flawed - if the endoscopy is 'positive' you've already been damaged. There is obviously a stage when it's getting to that point (as in the damage doesn't occur overnight) and the endoscopy would be negative, but it doesn't mean you haven't got coeliac disease or that you aren't having other awful symptoms.

There are also a wide range of symptoms that aren't vomiting and diarrhoea.

@ibsishell I just wanted to add my food intolerances are exactly like yours, except the red meat but tbh I never ate much of it so that may play a part. Everything else, like the oatmeal, the eggs, the cereal etc etc etc, that was me down to a T.
I did the endoscopy/ colonoscopy etc etc. The only thing "normal" blood tests picked up was the low ferritin/ iron/ vitamins but that's because my guts were screwed up from the Giardia as it affects the way nutrients are absorved.
The endoscopy picked up H. Pylori but the treatment actually made my intolerances worse as it just "pocked" the Giardia so I ended up realising that wasn't it (though it took a while).
@twoandcooplease You are NOT crazy. I'd sort of given up on finding a reason for feeling so crap. The only thing that came close to explaining sth was the very low ferritin but nobody managed to realise what actually caused it, so I'd stuff myself with iron and end up the same after a while. I'd got to the point where there was this little voice in my head telling me it's cancer and I'm going to be too far gone before anyone can figure out what the real issue is. I was never told I was nuts but it was implied. So, hang in there. Keep at it and I hope you find the right doctor for you. You are not crazy!

Also - in combination with my last post I also tried to eat as low-GI as possible. This definitely helped in the beginning when I was starting to tolerate food again and working up to meals. I'm much better now but still couldn't eat a bowl of porridge and fruit without feeling sick! I need to combine carbs with fats and protein to avoid it.

poked*!

Sorry I’ve not read the whole thread but my colleague really rates a good probiotic, kefir and apple cider vinegar.

I would second this - I ended up on prescribed anti-histamines to manage a reaction to an insect bite (alongside anti-biotics etc)

They made a massive difference to my IBS - especially given the antibiotics I was also taking which are a recipe for a week attached to the bathroom normally.

I now take a cheap once a day loratadine - it’s not as effective as what was prescribed but it’s enough that I don’t panic about getting accidentally doses with a trigger food when I eat out.

I’m also snorting at the previous list - there’s at least 6 foods on there I literally couldn’t touch and a fair proportion of the rest are at home only foods when I know I’ve got good bathroom access and don’t have anything planned for a few days 😂

With similar symptoms, I was tested for giardia as I was not long returned from Russia, where it's more common. Negative but positive bloods for coeliac. I was later diagnosed with more tests and found that I was lactose intolerant due to the damage done by coeliac disease. My safe foods - bread, pasta - were actually making me ill. It's worth more tests and continuing to be persistent, even though you feel so ill. I hope you find the cause.

I bought kefir grains and make my own kefir. It’s really easy.

Hi everyone, thank you so much for all the helpful replies and I'm sorry to everyone else who is suffering too. A lot of information and suggestions to take in here so apologies for not replying to you all individually as I'm quite tired!

I ate some crackers earlier and the pain has subsided a bit since this afternoon so I will try and eat at dinner and look into options from tomorrow. I had a bit of a cry at my DH who is lovely as always and told me not to fret and we'll figure it out. Just very overwhelming when you're in the middle of a flare. He actually said the pasta had a detrimental effect on his stomach today too (he hasn't had any either for months) so maybe it was just a system shock as well.

Please ask your GP to refer you to your local FODMAP trained dietitians for advice. What it means is low fermentable carbohydrates which when they pass into the large bowel are fermented by bacteria causing gas and that causes the symptoms. With the low FODMAP diet when you restrict those foods the aim is to get yourself below your tolerance level to FODMAPs, reduce the gas, then reintroduce each food one by one to see what you react to. Then once you've tested the foods you can reintroduce the foods you tolerate. Works for about 50-70% of people. It could be that you've been eating a food on the allowed list with other high FODMAP foods and that's causing the reaction. If that makes sense? But you need the most up to date low FODMAP advice as its changing often as still fairly new. Please don't go by a print out online for example.

Private food allergy testing is largely a waste of time and money. Aside from gluten for coeliac and lactose intolerance it's very hard to prove anything else and you are better with a GI dietician and an elimination and reintroduction diet.
On another note have they checked your small bowel either with a dedicated ultrasound ( only some hospitals can do this) or a small bowel MRI? Crohn's in the small intestine can be missed although it is much more common to have an IBS diagnosis
Goos luck

IBS is an umbrella term for many many conditions, some of which are eventually identified, some less so, but often, IBS is just used for ease when healthcare professionals don't want to investigate further.

Having looked at your list of foods that are triggers, they include many of the things that are problematic for me too. It was back in the 80s I first said that I was allergic to most fruit and people would laugh at me, so felt vindicated when FODMAPS became a thing and I finally understood why eating supposedly healthy things like apples, grapes and melon would leave me in agony.

I appreciate you dislike a lot of the allowed foods on the FODMAPS list, but it's a starting point really, and besides, if you don't like something, you don't need to eat it. What is important is you try avoiding the foods that are high in FODMAPS or even just think about how you eat things - using myself as an example, I know wheat is a trigger, so can't eat it every day. Instead, I eat it for one meal only, once or twice a week and never on consecutive days. I also find sourdough bread the easiest to eat.

Starchy foods like rice are also things I struggle with, so I just don't eat them. If rice is a trigger for you, avoid it.

Ask your GP to refer you to see a dietician who can guide you through how to properly do a FODMAPS elimination diet. Alternatively, if you can afford to see someone privately, do it.

@Ghastisflabbered 'At home only foods' is a very relatable phrase! My tiny silver lining of lockdown was eating quite a lot of cheese because I knew I wasn't going anywhere and as I live alone there was never a queue for the inevitable urgent loo trip.

Have you seen a dietician? and It sounds like you are unwell enough to potentially benefit from a faecal transplant. It might be worth talking to your gastroenterologist about it?

I note you mention endometriosis and the author of ‘One Part Planet’ is also a sufferer and her book makes for an interesting read and some good recipes. I also found ‘The Clever Guts’ diet book by Mosley very useful - and helped me discover I was lactose intolerant and the Greek yogurt I loved was doing me no good at all!