What was the bloody point of seeing this dietician (warning, it's very long - sorry)

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I've been having stomach problems for months now. Brief symptoms - severe stomach pains about 1.5 hours after eating for 45 mins culminating in me vomiting or it suddenly getting better.

Ive gradually stopped eating anything that seems to cause a problem leaving me with a very restricted gluten free, fat free and anything with any bloody taste- free diet. I've lost 15 kg (about 2.5 stone in 6 months). Attacks have lessened from 4-5 to 1-2 a week).

I've had loads of tests - nothing showing a cause. (bloods ok, poo ok, ultrasound, MRI, endoscopy, swallowing camera, coeliac ok etc). Eventually diagnosed with IBS - despite bowels being normal and vomiting being atypical!

So waited 18 weeks for a dietician appointment. I gave her the above info (and more) after which she gave me a leaflet about IBS and talked about a restricted diet. It was a leaflet from the internet which I have been using and I have already eliminated all the suggested foods and am following all the advice. It was only at the end of the appointment when I mentioned the weight loss (she hadn't asked before) that she suddenly seemed actually interested in this "unexplained weight loss" despite me telling her it actually isn't unexplained as I'm basically unable to eat anything!

She suggested eating linseed and then we would need another appointment. If there is no improvement, she will refer me to another dietician, I did ask how this person could help, but she just muttered about 'procedures' This would take about another 18 weeks. Just had the letter with the date of the next appointment with her which is April 2020! So basically, I will have to wait 9 months to see someone else!

I understand that some people might need to make lifestyle changes and so be able to control or alleviate their symptoms and so having 2 appointments is helpful, but I'm not sure how waiting another 5 months doing exactly what I'm doing now, is helpful. (Apparently, I cant miss out or bring forward the second appointment).

So, I assume I'm going to have to save to pay to go private. In the meantime, I'm going back to the GP to see if there is anything else I can do.

Posting for a couple of reasons a) in the hope that someone might be able to suggest something I haven't though of and b) cos I'm really pissed off and b) because just writing it all down has been very cathartic!!

Thank you so much if you have read it all.

I'm sorry i don't have any advice for you but wanted to sympathise - that sounds totally shit and if the waiting time is as long as that you would think that the GP could point you towards the leaflet and then the appointment might have something else to offer you.
I hope someone reads this thread and has some constructive advice.

What a bloody waste of time and money.

My MIL recently had similar. 16 week wait to see someone about lifestyle changes before she can be referred to a consultant about a long term health condition. My MIL is a slim vegetarian, gluten free, has never smoked, doesn’t drink, and exercises 3/4 times a week. She is fitter and healthier than people 50 years her junior.

Which is exactly what the dietician told her, before putting her on the 8 month waiting list.

Have they ruled out gallbladder issues - not just gallstones but gallbladder failure too?

Do you get full quickly after eating as well? Your symptoms sound similar to a family member who has gastroparesis.

Sounds like NHS dietician services to me! Nothing you can’t find in 5 minutes on the internet.

Sorry not to be helpful

Have they ruled out gallstones?
SIBO? Helicobacter pylori?
Also, have you tried probiotics?

I thought gastroparesis too. Have you had a stomach emptying study? (Can't remember the proper term)

Thanks for the replies.

Sorry, forgot to say, I had my gallbladder out in 2016 so not that.
That itself can cause problems, but Dr discounted that.

Gastroparesis and Helio was mentioned, but apparently the tests ruled them out too.

I do take probiotics and kefir.

My stomach doesn't feel full quickly, possibly because I don't eat much! But I'll look into stomach emptying, thank you.

I'm sorry that other people have been having problems too.

Sounds like when I had gallstones/gallbladder issues. Had ultrasounds, but they didn’t see it for some reason and I kept being sent home. Was absolutely horrific. Afterwards a doctor told me it might help a bit not to have drinks with my meals, to have them after the meal instead. And to drink as hot water I could manage, often.

Have a look into a condition called

Bile Acid Malabsorption

1 in 10 with removed gallbladders still have problems, so please don’t rule it out.

Thanks @Glogirl but Dr did mention that but because my bowels are fine or no diarrhoea or constipation, he was also discounted it.

Just looked back Wrecktangled and apparently the capsule swallowing test ruled out gastroparesis.

Thanks GoodDog, Dr did tell me that but it seems to be the lack of diarrhoea or constipation that rules out gallbladder issues and which this why I think they've said it's IBS because they can't think of anything else!

I'm gong to go back to the GP and get back into the medical system again.

Really appreciate all the suggestions, thank you.

Hi sorry if this has already been mentioned but have you had the breath test, for cebo? (Not sure if that's how you spell it) my boss had very similar symptoms, finally went private and she had this test. Turns out she's got this cebo (certain type of bad bacteria in the gut) so she needs super strong antibiotics. Not sure if it's available on the NHS but it might be worth a google if you haven't done so already

Sorry just realised it's spelt 'Sibo'

I think I’d complain actually Op. the referral hasn’t even tried to achieve anything as far as I can see.

Less serious but I also had a referral for pain and was given completely incorrect info by the physio, who also did a quick google/ print in front of me (I went private after that) I was so annoyed. What are the NHs paying these people for?!

Thanks.
I will certainly ask the GP what the point of the referral was and feedback my thoughts!!