Help me work out my digestive system?

[Nogodsnomasters]

Hello, I am hoping for Mumsnet lived experience opinions.

I want to pre-face this (extremely long) post by saying I've seen my GP several times over the last 18 months and presented to a&e once re my issues. I have had the following tests, full blood test (fine), coeliac screening (negative), 2 qfit tests 6 months apart (both negative), H pylori test (neg), calprotectin test (normal), an abdominal US (normal except they discovered I have one kidney, brand new information to me!), failed endoscopy (severe emetophobia/anxiety, I fought them off even under sedation 😞), barium swallow test (reported no hernia, no ulcers, no tumours, but very obvious and severe refluxing of the stomach contents into oesophagus). So because of the blood and stool tests being negative and the NICE guidelines regarding these the GP's hands are tied and no further testing is required.

My symptoms are - 5 years of acid reflux, 18 months of constipation, repeated impactions, overflow diarrhea, spasming sensation under right ribcage (painless), pain in 3 areas of the right side, one to the right of my bellybutton, one low right near hip, and third right side pain in the area between ribs ending and hip starting. I also have pain just under my sternum above belly button. Excessive wind, on/off bloating, insane gurgling noises like it literally sounds like a drain.

Things I have tried: permanent diet changes for the reflux so no longer consume alcohol, chocolate, tomatoes, any spices whatsoever, no carbonated drinks, I also take a daily ppi. I also quit smoking. For the lower stomach I have tried fybogel for 6 months, (I'm now switched on to daily laxido 5 sachets per day to stop the impactions), I have tried flaxseeds, chia seeds, kiwis, I drink insane amounts of water per day, I've tried fibre tablets from Holland and Barrett, I take daily magnesium (3in1 nutrition geeks brand), yoga, walking, stomach massages.

In sept 2024 my son was diagnosed with coeliacs disease (with the exact same symptoms as me constipation, reflux, stomach pain, nausea) and I went gluten free with him, since stopping gluten I have noticed some positive changes - my nausea is FAR less frequent, my appetite has increased and I've managed to gain 3lbs (yay!! I had lost 12lbs over the year due to lack of appetite) so despite testing negative myself for CD I think the fact that I've had some obvious changes without gluten shows I definitely had issues with it. In December the dietician recommended my son go lactose free also so I have done this alongside him but seen no difference for myself (definitely for him). I am now wondering about a casein intolerance for myself because for the last 9 months I have noticed (sorry this is grim) these white balls coming out separate from my stool and after much research I believe they could be casein curds, I know this is much more common in children than adults but I never had this before in my life until 9 months ago, it's not every stool but several times per week.

I have a private GP appointment next Friday where I plan to request an abdominal CT scan, mainly because I absolutely can't afford a private colonoscopy which is almost £3000, the GP appointment was £150 and a CT scan is more affordable for me and at least can check out my single kidney situation along with my bowels and my reproductive organs, right?

Genuine apologies for how long this is but this is affecting my every day life, I've had to leave work due to how severe and constant the symptoms are and I feel like doctors have just left me with taking laxido and ppi every day and it barely manages the situation all because I don't have red flags of cancer. Does anyone have any insight or similar experiences?

Nobody? Maybe chat was the wrong place to post, was thinking traffic wise I might get more notice lol

Use the search function and you'll find some helpful threads

What about sugar? My insides don't like sugar consumption.

Have you tried a dietician?

I wasn't offered a referral to a dietician for myself, my son was given one for his coeliacs diagnosis. Sugar is something I haven't tried to cut out actually and consume daily - thank you.

Yes thank you I've read most of them.

Oh that's good. I would have posted a link to the one I found helpful but 8 can't find it just now.

Dairy?

You need a colonoscopy IMO

My first thought was casein. Try going dairy free but be mindful of cross-reactivity to
soya at first. You have nothing to lose by doing an elimination for a bit to check! Good luck.

Why won’t your Gp do a colonoscopy? Surely that’s the next step.

Because the nice guidelines for a referral for a colonoscopy are positive FIT test, positive Calprotectin test or issues with blood results - none of which I meet. I was told if they referred for a colonoscopy it would be rejected by the gastro team.

This post is almost a year old now, I saw the private GP and a private gastroenterologist at my own expense - he refused the CT scan even though I was going to pay for it, said it wasn't necessary but did offer me a referral to a dietician and a bowel transit study. I did the transit study and it came back normal, the dietician telephone consultation only came through a few weeks ago so I've been following her advice - a small amount of improvement has been seen but my bowels are still nowhere near what would be considered normal and I'm still reliant on 5 laxido sachets per day.

I wonder would I be turned down for an MRI the same way I was for a CT scan? I don't want to continue wasting money. The gastro was very dismissive and said he felt it was "probably diverticular disease and IBS combined".

You need colonoscopy , CT scan wouldn’t show ulceration etc. I’ve had Crohn’s for 25 years - took three years to get diagnosed by which time I needed extensive surgery. My bloods in 25 years have never shown a flare but in reality I’ve never been without ulceration or achieved remission and now have a stoma

Would my symptoms be indicative of Crohn's though? Because I've been told no. Surely your Calprotectin stool tests came back showing inflammation? X

I got a colonoscopy referral on the 2 week wait, despite all sample and blood tests being fine. Thank god I did! I would go back to gp and ask again.

All of my indicators were also ‘fine’ but I had a lot of the symptoms you’re experiencing. I was referred on the 2 ww pathway and had an endoscopy and colonoscopy the same day (not pleasant but had lost some weight rapidly at that point). Turned out to be diverticulitis and flaring, not easy to diagnose without a colonoscopy. Course of antibiotics helped. I get the odd flare up now but not often and avoid seeds or anything that might get stuck in the pouches. I also have to ensure regular bowel movements as I get constipated very easily. I take flaxseed on a high fibre cereal every day.

For my child removing gluten and then dairy resolved most if not all these chronic problems. And it was a dietician who identified the issue - on the basis of symptoms and not of tests / results.
But when my kid stops taking their daily calcium carbonate and probiotics or eats too much fried food and chocolate, back it all comes with a veangeance.
It must be exhausting to live with. Caring for someone with it feels bad enough but I know the lived experience is much worse.

There is an amazing Facebook group out there called Movicol Mums. There is nothing they don’t know on the subject, if you are wanting more crowd sourced advice.

I know the original post is old OP but out of interest did you do a gluten challenge before your coeliac test or were you already on a gluten free diet when it was completed?

Coeliac blood tests can show false negatives even if the person has been eating gluten prior to the blood tests anyway but will absolutely show a negative if the person hasn't had gluten in their diet to trigger the autoimmune response prior to the blood test.

Two of my relatives had negative blood tests but were diagnosed coeliac after a colonoscopy.

Given you have a first degree relative with a positive coeliac diagnosis I would be revisiting that one first.

And the standard gluten test requires good levels of IgA in your immune system. When my son had his gluten test done the NHS didn’t check his IgA levels were normal at the same time .. they aren’t, so he got a false negative result.

Can I ask why "thank god?"

When I had the coeliac screening I was still eating gluten as my son had not been diagnosed yet. All my tests were done in spring 2024 and my son was diagnosed coeliacs sept 2024 which is when I went GF with him. I now also have a niece who's been diagnosed with it since his diagnosis. I do believe that going gluten free has really helped how poorly I used to feel, I've definitely been able to gain weight back (over a stone this year!) and I feel nauseous WAY less often - however the chronic constipation, weird-ass stools and acid reflux continues. I guess if it WAS to be coeliacs then one year is not always enough to completely heal the gut and maybe I'm still on that journey?

I don't know much about the kind of issues you have, but is there any possibility you could have a parasite in your gut? They can be very troubling and deplete general health.

Because it was cancer and caught before it spread. Treatment hasn't been fun, but much better than the alternative.

Not at levels that were any concern but they only tested once , blood has never shown active disease either and I’ve had 10 surgeries. In the early days I had a lot of issues with constipation rather than D as I had such bad narrowing of bowel and the top of my stomach was so ulcerated that I needed a bypass surgery to reroute.

Wow that's scary. I've had two normal Calprotectin tests, one in spring 2024 and one in summer 2023. What is the treatment for UC?