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 would suspect Crohns as PPs have said. My DD has it. Low residue diet may help

Dint you typically lose weight on crohns, not gain?

You’re describing exactly how I was before being diagnosed with Ulcerative Colitis. A year ago I was put onto meds and my life has completely changed for the better. Push for a colonoscopy ASAP.

Might it be worth getting allergy tests done. York test is the usual one. You have to pay for them but a finger prick of blood is all they need and the results are quick

I'll read and reply to everyone soon, but I just want to say that I go days without food, I barely consume anything. Some days I can just about sip water. I'm not lying here stuffing myself with biscuits and eggs every day. That's why they tried me on the Aymes fluid because I wasn't taking in enough calories, or any nutrition from food because it passes through so quickly.

The last thing on my mind is my weight. I am very overweight, but right now I just want to stay alive.

The gastro said I don't have Crohns or Colitis because the capsule endoscopy didn't show either. I had the pill camera so it went right through.

But an endoscopy only looks into your stomach - colitis is inflammation of the colon, and Crohns affects any part of the GI tract but some people it focuses on the lower. Surely they won’t know for sure until they do the colonoscopy. Or did rhey send the pill camera all the way down? If so why bother with a colonoscopy?

Chat GPT is great for this sort of discussion, go back and forth. Ask for fibre free versions of food you love etc

You swallow the camera and it goes all the way through.

They want to do a colonoscopy because the pill cam can't take biopsies.

Yes, this is the overriding worry. I'm no medic but what exactly IS the extra weight? It can't be excess calories.

Im brainstorming now OP but do you have trauma in your past? I read « the body keeps the score » recently and found it very interesting.

That makes sense.

Quite. Not just that food is passing through quickly but that it would be very difficult to put on weight eating principally ham and eggs. Could it be swelling, inflammation, water retention for eg rather than weight gain?

It has to be, the op must be very skinny indeed. So if she looks overweight it’s not fat, it’s not possible. I’d be straight into a&e.

Gary Brecka on YT and the carnivore diet.

Are you taking steroids for the inflammation? They can help with inflammation but also cause weight gain. May be worth trying them from GP

Op this sounds so much like inflammatory bowel disease, either Ulcerative Colitis or Crohns. You can request a calprotectin test from your GP. It is a what ppl with ibd test for in their stool. Anything above 50 is cause for concern. It might a. Rule out ibd or get you moved up more urgently.
Have a look at Crohns and Colitis UK, they offer good advice for when in a flare (presuming this is what you might have).

Bone broth, plain soups, mashed potato, electrolytes, smooth peanut butter

Not quite the same but after a bad stomach virus, I could hardly eat for months. I survived on crappy white bread (always toasted), Baxters chicken soups, mashed potato and a few plain (salted) crisps.

Be very wary of kefir. I tried some and the result was immediately disastrous, and set me back for a few days. I was also unable to eat kimchi or anything fermented, even things I’d eaten before.

Edited to add that I also had a Dioralyte every day. They seemed to help with the faintness and weakness.

I hope you get help soon 💐

At risk of sounding completely ignorant, could it be some kind of allergic reaction? I really don't know anything about it at all, but I'm wondering if that could account for the negative reaction to foods.

In regard to the weight gain - I really don't think that's an issue at the moment. If you're barely eating anything, your focus should be on trying to eat as much as you can, irregardless of your weight. Ditto with the food which 'isn't nutritious' - obviously not ideal but at the moment just try to eat what you can. I personally suffer from a loss of appetite, and one of the main lessons I had to learn that however 'unhealthy' the food you are able to eat is, it is more unhealthy to not eat anything. I've had days when I've only eaten a packet of crisps, and while this isn't ideal, I'd rather eat that packet of crisps than say, 'oh that isn't healthy so I won't eat anything'. I'm personally a low weight right now due to not being able to eat, and I don't see any difference between the advice that was given to me ('eat whatever you can') and to you simply because you're 'overweight'. As others have said, it's clearly not because you're eating too much, it sounds like a bodily reaction to something to me unrelated to 'calories in/calories out'. There are loads of reasons you can gain weight, and food intake is only one of them (e.g. antidepressants, medication, stress, thyroid issues). Try your best to eat whenever and whatever you can - you aren't being 'unhealthy', you are nourishing your body as best as you can, and that's a really good thing. The reason that the weight gain is an issue isn't because you're eating the 'wrong food' or doing anything wrong, but because it could be indicative of a medical problem. It isn't your fault, it's a symptom that something is going on in your body.

As others have said, an elimination diet might be an idea, to see what foods you can handle. Gently introducing new foods in really small quantities, to see if anything works. Honestly though, I agree with other posters here - your body is in crisis mode, and I'd say try to get to the doctor's ASAP, as they have actual expertise to be able to diagnose whatever is going on in your body. I'm really really sorry this is happening to you, it must feel really scary and horrible.

I really do feel for you, OP

I know someone who suffers a little like this....nowhere near as bad as you though

And with my friend, it can be such random foods which will be eliminated super fast, with terrible pain and fainting

Apparently it might be a form of allergy....although with my friend its so weird because one day she can eat bread for example, the next day she can't

I'd suggest seeing a dietician who specialises in allergies and intolerances

You might also have leaky gut

Sending you love ❤️

Could it be related to your disability. People with EDS can have mast cell degranulation problems. Do you have a diagnosis of anything particular? You do not have to disclose it here. If yes then just check on the relevant forum that this is not a recognised problem.

In regard to the weight gain - I really don't think that's an issue at the moment. If you're barely eating anything, your focus should be on trying to eat as much as you can, irregardless of your weight.

IMO, this unexplained weight gain is a very important issue.

It wouldn't be possible to gain weight to any sort of degree with the symptoms OP describes. Not in a general distribution. OP, how much weight are we talking here? Maybe your definition of 'a lot' is different?

For everyone saying this sounds like my relative with Crohn's, did your relative really gain weight?

I think we may be forgetting the first rule of House...