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.

Severe digestive illness sufferer here lovely 🙋

I've been through everything so will share what I have done ( I have half my intestines missing now and live mostly on liquid. I'm very extreme so don't worry, I am a rare case!)

Food - yes to chicken, white rice, simple fish, chicken broth, low residue food. ( This is significantly easier to digest. Broth is very good but don't leave it too long in the fridge ( days) as histamine develops and you might have a histamine problem ( mast cell activation).

Elemental 028 - this drink is absorbed high in the tract so gives your bowels a rest. It's full of nutrients. You can get on prescription but it's not easy without diagnosis. You can buy it privately and get delivered. It costs lots. In your situation, I'd prioritise buying back up of this. I've had to buy it many times. I would actual ask the GP but it usually comes from a gastro consultant.

Doctor - I think they're exploiting your vulnerability and fobbing you off. I've been left crawling about with intestines ruptured at home with no support so I know what they're like when they don't understand.

You need a good trusted friend to go back to the GP with you. Do Not Cry. I know how hard that is. But do what you can to be strong, assertive yet polite.

With positive inflammation markers 12 months is disgraceful.

Why are you in the wheelchair OP?

Do you have hyper mobility/ EDS?

If you had a full colonoscopy and it showed no inflammation this does not mean no problem. Also, my MRI s often looked normal, my colon was not normal!

You sound like you have some issue with the autonomic nervous system so it can make your bowels go nuts ( too fast, too slow, strong reactions). I have this and POTS.

I know it's tough but a part of you needs to go hard on this. Absolutely no shit food, stick to basic stuff as advised. No alcohol. Bone broth is great for digestive healing.

Have you tried antihistamines? I take fexofenadine and famotodine. Famotodine is a H2 histamine blocker in the gut. It helps acid reflux also. It is not the same as a PPI ( omeprozole - not a histamine blocker). Your reactions make me think there may be an excess histamine problem. The GP will have no clue about this. Most of us have to sort out own issues out ( antihistamines are a start to try out - non drowsy brand fexofenadine)

Sounds similar to chrohns or ulcerative colitis?

Sorry you are going through this sounds unbearable!

Sorry to hear that OP. I'm wary of saying anything as you'll know more than me and are living this but you mention rice in the context of fibre. The last time In looked, this had 0.4% fibre if plain white rice - boiled yourself rather than microwave sachets which often have additives.

Was the rice you tried plain white rice? It isn't nutritionally complete but can provide calories and form part of an exclusionary baseline that enables you to selectively introduce items.

If you are 'reacting' to plain white rice then it might not be the fibre you are reacting to.

Good luck.

I have this. There are treatments.

The arsewipes need to actually investigate and diagnose to enable you a chance of trying something OP. You must go back with a friend and press for the colonoscopy with biopsies.

An MRI does NOT rule out IBD.

How long is the wait for a colonoscopy?

I find a low carb high protein diet helps
Limiting the amount of food you eat and intermittent fasting.

I eat between mid-day and 8pm.
3 egg omelette is my go to - with tomatoes, feta, goats cheese, spinach, what ever you fancy.

I will have fruit and nuts for snacks.
For dinner I have the 800Fast (Michael Mosley diet) recipe books and we do something from there. Any Keto book will do.

Last might was Miso soup with pak choi, mushrooms and prawns.

Tonight will be Thai green curry with prawns.
I eat cauliflower rice instead of rice but you could try brown or wild rice. I am trying to lose weight also. I eat a fair amount of lentils rather than rice.

Limit
Milk, carbs, sugar (I have cut down on biscuits and cake as I think sugar might b a trigger). Any processed foods.

I will have Greek yoghurt with berries and honey for a treat.
I wasn't as bad as you but I was going to the loo up to 8 times a day and it was exhausting. My system felt in overload. This has helped, I go 1 or 2 a day.

I have had a coloscopy, MRI and blood tests. Neg for celiac. My inflammatory marker hit over 900. Last time I tested it was back to 35.

Still try to get to the doctors but in the mean time the above has helped tremendously.

Can you see attached dietitian?

Ps. You must get a colonoscopy urgently!

Have you considered doing a yorktest food intolerance test? They're not cheap around a £100 as sometimes have offers but might make things a bit clearer for you when flags up things?
Helped me out.

This sounds so hard op. However.

and I mean this gently, if your gaining a lot of weight you’re consuming, a lot more calories than you need. You need to eat with in your tdee. Work out what that is, it could be as low at 1500. Then devise a plan to consume no more than that. Of foods you can tolerate.

How about potatoes?

nuts?

I get episodes of this but thankfully they pass. Mine are normally medication related, turns out the omeprazoles and related prazoles are the worst culprits. I ended up in hospital several times, and could tolerate only Haribo and mash.

Definitely worth looking at any medication you are taking.

Also, have you tried fruit pouches?

I have Ehlers-Danlos and gut dysmotilty as the route cause of mine so will never fix it

It sounds like your reaction could be linked to MCAS.
Have you ever tried to take an antihistamine like cetirizine? Does it help?

Tbh I dint think that loosing weight should be on the top priority for the OP.

Gaining weight is much more complex than calories in, calories out. And improving her quality of life shpuld the first thing to do.
Once symptoms are under control, then weight can be looked at.

"I seem to be semi tolerant of chicken, white fish and salmon but not red meat"

But you said you can eat ham...

Research into the micro biome is ongoing and of great interest at the moment.

it’s about the balance in your gut being wrong. Like when you take antibiotics the balance in your vagina is altered and people often develop thrush.

I think fermented foods are recommended and some people go so far as to implant poo samples with healthy microorganisms 🤮

I second crohns. I have a family member who has an absolutely miserable time with food. Can't eat anything overly fibrous. Lives on a diet of white bread, cheese, marmite, smooth pickle, non fatty meat, passata (skins and pips are a nightmare) so vitually no fruits or vegetables unless it's boiled until soft (I'm taking root vegetables, anything like an onion would have them on the loo for days) white pasta and white rice are staples too.

More to the point - regardless of weight - overeating puts stress on your whole GI tract when you have digestive issues.

This sounds like a family member with Crohns. She is on a much better medication now, but was very ill for years.
She eats a low-fat diet with plenty of vegetables, but she couldn’t before she had the newer meds.
She used to often fast for several days, until it settled,( but she could tolerate water).
Have they definitely ruled out Crohns?

Ensures. Just because you’ve put on weight obviously doesn’t mean you’re not deficient in the basics!

I have this, also. Dumping syndrome it’s called, where your stomach empties rapidly and you’ve basically not absorbing anything because it’s all just too damn quick. I feel like utter shite as well. Push, push, push for a Gastroenterologist, even private. There’s medications that can slow things down x

My life was falling apart until I tried the Fodmap diet. I feel for you.

If you just need relief, why not stick to what has been mostly ok and just restrict what you're eating (not the amounts) to give yourself some breathing space. Don't do it for long.

The Monash app is the only trustworthy source of info about low Fodmap foods.

Hi OP, haven't RTFT so sorry if this is repeating what others are saying.

I've had similar symptoms after my 3rd baby was born in 2020, and my iron ferritin levels were really low along with my hormones obviously. I think i came to the conclusion it was some kind of mast cell activation syndrome type thing, which I've heard can be triggered by stress, low oestrogen, or other things that make your immune system more vulnerable or lower.

Got to do the school run now but will try to reply again in a bit ❤️

People have mentioned the FODMAP diet - its worth a look. I have IBS and am extremely reactive to onion and most of the allium family.

I also can't eat anything highly fermented, including things that are often recommended like kefir & sauerkraut. I don't like yoghurt either but that's more a taste thing.

Don't take any pre or pro biotics with inulin in it - check all ingredients first. It can trigger inflammation in the gut in people sensitive to it (like me).

Also as others have said, Ehlers Danlos syndrome definitely causes bowel issues so that is worth checking, even if you don't have some of the other symptoms. It's very underdiagnosed so not as rare as many GP's will try and tell you.

I think maybe you’ve misunderstood. Eat within tdee is maintain. Not lose.

i didn’t ask her to diet.

the point remains if she is gaining she is eating a lot more than she requires, so even if it is just ham and eggs as she says, it has to be a lot more of them than is needed, and her weight is clearly an issue for her. So eating to maintain at the right foods, it’s important,

Have you been tested for Bile Acid Malabsorption? I developed this after having my gallbladder removed. It took years to be diagnosed but treatment is simple - I take sachets that slow down the absorption of food. I'm also deficient in B12 as a result and have regular injections. Symptoms sound similar - immediate need to go to the loo, causes pain, the sweats, dizziness, nausea. If it's bad, I could go to the loo 15-20 times a day. Fatty, sugary or rich foods are the worst for setting this off.