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.

Have you tried a low dose anti depressant? It worked for me during a particularly bad flare up over 12 months.

That's crap OP

Some suggestions (I'm not a dietician)

Chicken broth?
White rice (I know you said rice but maybe it was brown?)
Porridge made with water (I know you said oatmeal but if you used milk that might have been the issue)
Honey in herbal tea
Sourdough bread has less gluten than other breads
Coconut yogurt?

Have you investigated FODMAPS?

https://www.gastroconsa.com/wp-content/uploads/2019/09/Low-FODMAP-Diet-FODMAP-Foods-Updated.pdf
Try some ideas from here.
Ie it suggests certain veg and fruit might be tolerated better than others.

Spelt bread
lactose free dairy or dairy free
Potato/ root veg

Have you thought of a private allergy test? It can show you what your intolerant too, I'm considering it for myself

Hi, yes I've been on 20mg on citalopram for a decade for my anxiety and depression.

I've looked at FODMAPS but a lot of the allowed foods I also can't eat or dislike.

I had oatmeal made only with water, no milk. Sometimes brown sugar but not always.
Brown rice makes me cramp and white rice makes me very constipated. I was eating it after my colonoscopy and couldn't figure out why I wasn't using the loo for a week until I stopped having it for a few days.

Honey is a trigger also unfortunately. I haven't had sourdough in a while because I thought it caused problems but it may have been that alongside other triggers.

Have you tried probiotic supplements to see if they improve your symptoms?

Yes might be at the allergy test stage! Thank you for the link @Caspianberg

I was told for years that I had IBS and gluten and lactose intolerance. Similar symptoms to you.
It turned out to be gallstones... which they didn't look for until I was getting horrific pains and up all night with them, and I was the colour of Marge Simpson.
I'd be pushing for them to do bloods and check your liver function levels in case you've got gallstones starting to play up.

@Namechangeforanamechange I used to drink Actimel with my breakfast and stopped when I couldn't tolerate breakfast for a while so I might try again. I also bought some acidophilus tablets which I need to try, I'm just so anxious about putting anything new into my body because I seem to flare with everything.

Also forgot to mention high fibre foods in general make everything very painful, so I'm currently on white toast because even the 50/50 bread was too much. Thought I had figured out that part but apparently not! The pasta was also white so maybe just an overload in one day?

Huge sympathy, dp has Crohn's and an incredibly restricted diet so I have an idea how challenging it is.

I wonder whether there are specific things that are causing a flare up and then meaning you are more likely to react to foods you could otherwise have? Dp can usually have a moderate amount of salt, but if he's recently had a flare up then any salt will make him flare up again. So if you can work out a diet that keeps you well, you might be able to try adding single ingredients back in again.

Is a short course of steroids an option?

Re your dp's meals, stop trying to cook for you both together. Both dp and I will cook meals that we serve at the same time but are different, so some days we each cook for ourselves. That is just the reality of having an extreme diet in the house.

Dp has talked to be about the psychological side of adjusting to his diet. He felt better once he had accepted (and mourned a bit) for the fact he can never eat sugar, chocolate, dairy etc again. This might just take time.

@baklavagoddess hey! Please can you share how you get the private test? (I don't have private medical insurance does that matter?)

I'm desperately needing the test done and my gp is a while off doing it yet
I have started having morning stomach attacks for the first 2 hours and I can't explain what food is triggering but I need to know

Op I know the feeling you're going through I'm also only living off toast. And even still having flare ups I'm worrying I have to cut that out then I'd have .... nothing
I really hope you can get to the bottom of it and be able to eat a full meal without the awful after effects. It just puts you off even trying to eat when you know you'll be ill the next day. Frightening.

It's trial and error. My dc has ibs gluten free plus an elimination diet (under dietitian) has helped. When we eliminated we stopped all food for 24 hours then introduced one food at a time starting with plain chicken, then rice, vegetables etc. Each new food was eaten for minimum 3 days before introducing a new food. Dc also used fortified puddings for weight gain as couldn't tolerate the drinks.
My ibs has been helped (again not resolved) by probiotic tablets (taken at night) and intermittent fasting. I also have stopped all bread which has massively improved the loose stools.

@Stompythedinosaur I might ask about steroids soon.

Funny you say that about one thing setting it off, I just finished a course of antibiotics for a UTI last week. Actually had no extra side effects while on them which was weird, no stomach upsets. But since the course finished I've felt a bit crap. So gut flora probably messed up too, I may try the probiotics this week.

@twoandcooplease so sorry that you understand so well, it's just horrible. I'm currently in bed (I am self employed/freelance as a necessity!) just had a Deflatine for the gas and trying to face having more toast despite the consequences, because I don't have anything else atm. Could do an online shop later but need to work out how much energy I need to prepare other lunches etc. Toast is easy, that's the thing.

Surely you are clinically underweight? Don't you have a nhs nutritionist for this?

You need high calorie food to up your weight. Pref high fat rather than high sugar.

Nuts
Duck
Goose
Fried chicken/Turkey
Creamy sauces
High fat yoghurts
Rice
Rice pudding
Pastries
Butter on everything
Oily fish- salmon tuna sardines
Pies
Creamy soups
Sour cream topping on meals
Ice cream as a dessert
Pates/mousses
Fry food rather than boil

Hi OP. When I was first diagnosed with IBS over 30 years ago my GP back then recommended walking - a 20min walk a day to be precise. Which sounds ridiculous but there's a lot research that shows that walking improves digestion, our guts evolved over thousands of years in hunter gatherers who were constantly on the move. Whenever I have a flare up I try to do yoga and walk more along with avoiding foods which are the worst offenders. As you've had tests and nothing more serious has been found, and focusing on food isn't helping, maybe focusing on gentle activity to stimulate the gut could be worth a try. Also, there's lots of research these days pointing to the importance of healthy gut bacteria so it might be worth looking into probiotics as well. I do hope you can find something that works for you, I know how miserable it is when everything you eat makes you feel unwell.

Can you afford a private dietician? Ones near me start at £90 for a consult and dietary plan. Note NOT a nutritionist, must be dietician.

Similarly to one of the posters above, I found antidepressants helped. I was on the lowest dose of fluoexetine for a short time and that made everything calm down

Could you also look up about Mast Cells and see if the flare ups are worse in the second half of your cycle? I take antihistamines in the week or so coming up to my period and it helps mood, anxiety and other symptoms. Haven't clocked whether it helps my gut but if you decide to pursue the anxiety side of the investigation it could help

@heartofglass23 I am, but like I said, the doctor is not interested and just tells me to up my calorie intake.

Can't eat most of what you suggested, no creamy things or lots of fat, no nuts, pastry, pates, ice cream, fried foods, rice, all of these give worsening of symptoms.

@Waipai I used to walk a bit every day but flares stopped me from doing that the past six months, I would like to try again but also very low energy due to low food intake and weight.

I have coeliac disease and a hital hernia plus lactose intolerant! when did you last try Gluten free food, it has improved alot the past few years I've found. I'm very limited to what I can eat and it's very frustrating. Have you ever had a blood test for coeliac?

@EmmBeeOhDee that's interesting, I have endometriosis and hormonal imbalance so that may be part of the issue too.

@Speach no test for coeliac, even my private gastroenterologist didn't think necessary because no typical symptoms (constant diarrhea etc) I had the colonoscopy due to microscopic blood in stool but nothing found.

I’m another vote for FODMAP. You should do it it under a dietician ideally. It starts of restrictive but you gradually introduce foods to find out what you can tolerate, and in what doses etc ( so there may be a good you can eat a little or occasionally but not all the time). It’s a proper clinically developed systematic way to manage a variety of digestive disorders.

It’s been transformative for me. Look at it again. Monash university produced a book to guide people through it.

If foods are causing you to flare up then you really do need to find out which foods they are, and this will enable you to do it.

My symptoms started 10 years had raised TTg on blood test for coeliac. Had a biopsy and come back normal, was only a few months ago after insisting the doctors for another blood test, again come back raised. Another biopsy this time alot of intestinal damage after living 10 years with the wrong diagnosis. My doctor said I was possibly just starting out with the disease so my stomach wasn't damaged yet. Always worth asking again x