Please help me with food. I'm so upset.

[FoodHelpPlease]

NC for this and a TMI warning.

I am having terrible issues with my digestive system. I have done for about 20 years, but it has all ramped up in the last 8ish years and has got REALLY bad for just over a year. I eat food, it causes me to immediately feel like I have flu (body aches, burning face, blocked nose, extreme fatigue) and then it passes through extremely quickly. Minutes, sometimes. I can be on the loo up to 20 times a day and it's urgent and incredibly painful. I pass out from the pain of the cramps. The pain I get all over my body is unbearable.

I struggle to see my GP due to diagnosed panic disorder and medical trauma, but it got so bad I was so exhausted I couldn't sit up in bed and I fainted if I stood. My GP tried all sorts of medications, nothing helped. Stool sample showed inflammation, bloods showed severe anaemia and inflammation. I was put onto Aymes fluid instead of food and tested for Coeliacs which was negative. I was told I needed to see a consultant but it would be at least 12 months, even though I was fainting daily, couldn't move due to exhaustion and couldn't keep food or drink in.

I paid privately for an endoscopy and it showed nothing other than very rapid passage through my system. I'm now waiting for an MRI, ultrasound and colonoscopy but these will be on the NHS as I used all my savings for the consultation. My job sacked me for being off sick, but I cannot work when I'm barely conscious. I'm also a wheelchair user.

Anyway, thanks if you've got this far. I am really struggling with food. I can't tolerate anything with fibre. This rules out fruit, most veg, pasta, rice, bread, cereal etc. I can't tolerate dairy, fat, UPF. I'm living on plain biscuits, boiled eggs and ham, and even these sometimes affect me.

I'm desperate. Can anyone suggest what I could eat? I can't move around much either so can't be in the kitchen cooking, it's more grab and go ideas. I've put on SO much weight despite not being able to eat, and I'm at the end of my tether. I just want to eat lovely fruit and veg again and nutritious food, but it all upsets me so much.

I suppose I'm looking for really easy things to grab, that aren't packed with dairy or fibre, and don't take preparation. That's a big ask, isn't it? I can't believe I'm being left to suffer like this for so long. Any help would be so, so appreciated.

I’m no expert at all but just wanted to send my sympathy. The one very nutritional thing I can think of but you would need to look at the ingredients obviously is miso soup. It’s bought as a paste and you just add water, it’s a soya bean paste. Have you tried any rice products at all? Rice noodles possibly? You can have them in the miso soup.

Im doing this just as much to bump your post in case someone more knowledgable comes along.

Bone broth is very nutritious and very mild on the digestive track. You can add eggs and chicken. Quick to heat up in microwave or stove, no big cooking required.
Are you sure plain pasta is also out since you can do plain biscuits? If you could, you could add it to the broth.
Can you do juices? The fibre is mainly removed, but you could get extra nutrition.

I hope they will find oit what's happening to you soon. It's been long enough.

It's really hard for you but I think the easiest thing is to do a batch of eggs, chicken and white rice so you always have that to grab.
How are you with salad like lettuce, cucumber and tomato? Peanut butter?

I'm slightly suprised you can tolerate a plain biscuit, but not plain white rice? Might be worth trying that again.
If the dietician is really that long to wait, I think I'd cut down to the minimum you know you can tolerate, and slowly reintroduce things.

This is already so helpful, thank you all so much.

I've never tried Miso soup - definitely sounds like a good idea, and rice noodles should be OK, I think. Rice itself seems to be a no, but perhaps the noodles would work.

Bone broth - is that different to stock cubes?

Fruit juice is a massive trigger unfortunately. It's so frustrating because I love all fruit and veg, and it is the worst culprit. I can't do any salad, but smooth peanut butter seems to be OK in small amounts!

Can you try the elimination stage of the fodmap diet? That allows any meat, lactose free milk, oats, gluten free pasta, oat cakes, naked chips, rice.

It's odd. Things with skin, seeds, shells, fibrous strands etc are the absolute worst. Rice seems to inflame, but maybe I could try a softer rice like pudding rice.

Thats the wait for all the tests, unfortunately. The dietician and gastroenterologist advised a low residue diet, but some of the things I can't tolerate at all.

Some days it's just anything I put in, even plain water. It's really, really hard.

I'll look that up, thanks. I know I definitely can't tolerate oats or anything oaty, and rice, but I haven't tried gluten free pasta. I seem to be semi tolerant of chicken, white fish and salmon but not red meat. I wish I understood why.

Maybe ask your doctor about doing CDED - the Crohn's disease exclusion diet - for a while? You might have to stop before colonoscopy to enable them to see inflammation, but at least you would be surviving until then?

-Boiled, skinless, chicken
-Boiled/grilled white fish
-Consomme soup- adding in whatever bits you can eat
-Jelly

https://www.nutritionaltherapyforibd.org/dietary-options/crohns-disease-exclusion-diet#:~:text=Mixed-,Poultry,day%20max;%20unlimited%20on%20weekends)

Bone broth - is that different to stock cubes?

Much better. I always have soup whrn unwell or stomach hurts.
You can get them in many places, beef or chicken.
https://www.ocado.com/products/borough-broth-24hr-organic-chicken-bone-broth-406487011?srsltid=AfmBOopdYhq4On18ho7xjMoKE2r4Wd_SyBzQQ4f3WnwjkUXwo-j6v-ST

Try to freeze rice after cooking. Might help as it changes it a bit.

Did they suggest any probiotics?

Have you tried giving your gut a complete rest with a 24-36 hour fast of just cooled boiled water. Then introduce tiny amounts of foods that help with gut bacteria, such as a teaspoonful of live yoghurt, a teaspoonful of keffir, a teaspoonful of proper sauerkraut, along with very bland, easy to digest food like plain matzos crackers. And carry on adding tiny amounts of probiotics along with plain steamed white fish, chicken broth with rice noodles etc.

Can you at least suck on vitamin jellies to get some key vitamins in?

Sorry to hear this OP, sounds very frustrating. Have the doctors speculated whether they think it may be Crohn’s/UC?

If you’ve put on weight rather than losing it on such a limited diet, you must be eating more than your body needs. So it would be worth cutting back on food intake to give your digestive system a rest.

I remember reading about Enzymes, and their role in digestion. One thing it could be worth looking into is food like Tofu, which is sort of "pre-digested", and also maybe consider if taking enzymes separately anyway might be worth a try. Also the kefir type drinks (or start your own) and yoghurts, and fermented (another sort of pre-digestion) things like sauerkraut and kimchi could be worth a try, certainly the yoghurts are very gentle - plain is nice enough but now they are doing flavours. I have them but put my own chopped fruit in or add to a green drink/smoothie.

If inflammation is the main issue then you should really do fasting. After 12 hours of no food (you can drink water/black tea/black coffee) your body starts to reduce inflammation. I do 16:8 so I fast for 16 hours a day and within that my body has 4 hours of reducing inflammation. It really helps.

In your case I would go back to the GP with someone else to advocate for you. Insist that something is done. Ask for a second, third, fourth opinion. Complain to practice manager, etc until you get the healthcare you need.

Were often not taken seriously so you’re going to have to be very very pushy again and again to gain access to help.

You're barely conscious on some days, some days you can't tolerate water, you can't move much, are not well enough to hold down a job, are putting on weight.

I don't think this can wait however long to see a specialist.

Can you see a different GP?

OP this sounds awful.

If rice doesn’t work can you try cous cous? Or quinoa?

Please keep trying with your doctor, there is something underlying here….

Possible Crohns? My friend who has that is on a low residue diet and what you're experiencing sounds very similar to her. Skinless chicken breast, potato but fresh or mashed not chips and plain biscuits or bread made with white flour are her safest foods. Sometimes skinless turkey breast too. Rice noodles may well be easier than rice to digest. If you're having white bread watch out for additives. Things like iron can be hard on the digestive process. Sometimes her crohns is better than others and she can eat more foods, there are treatments if it is that. She actually finds coke better to drink than water, it irritates her bowel less, no idea why, but it stays in better.

Have you tried canned fruit as opposed to fresh? The canning process can reduce certain things that make fruit hard to digest as can cooking things like apple sauce, no skin 9f course. Go slow if you're adding new foods, could be just a tablespoon full to start. FODMAP is designed for irritable bowel syndrome which is a diagnosis of exclusion. Majority of the fruits and veggies on fodmap my friend can't eat even when she's doing better. You could try cross referencing the two and eating foods that are only on both lists to see if that helps...

I cannot fathom how you are putting on weight if everything is passing through so quickly.

Sounds like Histamine Intolerance. Have a google.

I was going to suggest bone broth as people have.Yes, it is different from stock. You can make it yourself, cheaply in a slow cooker. Or buy it - I use Freja bone broth when I have diverticulitis flare ups.
You can put small soup pasta in the broth if tolerated or rice.

You can get bone broth frozen in portions in m&s.

I wonder whether fermented milk might help. It doesn't have to be milk either it can be other things.

freshlyfermented.co.uk/product/certified-organic-dehydrated-milk-kefir-grains/