If all tests are ok then why am I experiencing such horrible digestive issues?

[MuddyDogWalk]

I've just came back from the hospital today following my 2nd gastroscope (last one in 2019).

Although I have suffered with IBS for 30 years I didn't start experiencing upper digestive issues until around 8 years ago. It started off as nausea, excessive burping, bloating, acid, stomach pain and very gassy but it was mainly around mid cycle. For the last couple of years though I have been experiencing these symptoms daily and they appear to be getting worse, some days much worse than others but in general I get very little let up from the symptoms.

During these last 8 years I have had 2 colonscopies, a pill camera endoscopy, a Bile Acid Malabsorption scan, US scans and the gastroscopes including the one today (I never, ever want to go through one of those again, ever!).

As with all the other tests nothing major was found during today's scope. The endoscopist said all looked fine (no ulcers, inflammation, redness etc), he took biopsies for h pylori and Coeliac disease although I have been checked for these several times before. He noted a very small (1cm) hiatus hernia but said it was unlikely to cause any major symptoms.

My symptoms are often so bad and so very similar to those described as GERD that I was convinced they would come back with this. I have been prescribed PPI's in the past but being an IBS-D sufferer they always upset my lower gut so I have been using Gaviscon with little relief.

Obviously I am relieved nothing was noted but feel that I am back to square one. Honestly, I feel so nauseated most days, get stomach pains when I eat (especially after breakfast), feel acid coming up my throat, regularly experience a raw/raspy throat with mucus and coughing, burping so much, I can't understand what is causing such uncomfortable issues if nothing can be seen as a possible cause.

I am very careful with my diet and avoid anything which is gas forming or acid aggravating.

Has anyone else experienced GERD type symptoms yet all tests are clear? Did you ever find out the cause and did you find anything which helped elevate the issues which wasn't a PPI or Gaviscon?

I've suffered with LPR/GERD most of my life. I found one mix of probiotics really helped, it included Bifidobacterium breve, Bifidobacterium animalis subsp. lactis and Bifidobacterium longum. I've just bought it again after not using it for a while in order to get my symptoms under control.

I also used acupuncture during pregnancy to deal with very bad morning sickness, it was the only thing that helped and it is thought to work by speeding gastric emptying. There is a point on the inner wrist as well as another point on the leg, just below the knee joint on the outer side of the leg, and together they work well to improve gut motility. Maybe worth a try if all else fails?

I would however encourage any women experiencing new gastric symptoms for longer than a couple of weeks, especially bloating, to get their CA125 and HE4 levels checked to rule out ovarian cancer. My mum's OC was missed because she had IBS and other gastric issues for years but chronic bloating is one of the warning signs for OC.

Can you give the maker of this it seems to be mainly a French face mask??

So many women our age with this problem!

Argiletz Green Clay 1 kg Extra Fine
Please do research it before trying.

https://www.stressnomore.co.uk/products/herbalistic-bentonite-clay-powder-food-grade-300g-13868?currency=GBP&sku=18064180160134308338091170&utm_medium=cpc&utm_source=google&utm_campaign=Google%20Shopping&gad_source=1&gad_campaignid=23179476458&gbraid=0AAAAAD4Hvlt5LhBTbW3lVc4xLRwQCr9Ot&gclid=Cj0KCQiAvOjKBhC9ARIsAFvz5liTBUveIRrZqy6kwCFIsBod-kxUT-EuPly8ksR5Pl3fBgq6neG79wcaAu_1EALw_wcB

https://www.theclaycure.com/products/premium-green-clay?variant=40731995734198

These websites explain a bit more about it and how you take it.

You sound very similar to me OP. I have been told I 'probably have fibromyalgia and ibs' and just been left to deal with it. My GP is not interested in helping me so all I can do is chug gaviscon advance and occasional famotidine. I can't seem to take any ppi or h2 blocker long term as they cause bowel issues. I have a hiatus hernia that was 2cm last time it was checked (2021) but I've had a few courses of antibiotics since then and things are much worse now.

I personally think antibiotics are the problem in my case and have caused gut dysbiosis, amongst other things. I have suffered with recurring uti's all my adult life with no resolution other than repeated antibiotics. I honestly feel like they will be the end of me. They have affected my whole body, not just my stomach. I've tried probiotics but can't tolerate any, cut out dairy, gone vegan, reintroduced eggs, cut out gluten, reintroduced gluten. Nothing works.

I'm changing gp practices soon in a last ditch attempt to make some progress but don't want to get my hopes up too high.

Most likely this. Flexible inner tubes! :D

This is exactly the same as me. I've been diagnosed with MCAS and now take meds as well as following a low histamine diet. Gut has massively improved. Definitely worth looking into.
Also note if you have worse symptoms at different points of your cycle. Rapid changes in oestrogen, which happens at different points in the cycle release histamine. I always feel better for the first half of the cycle.
Hope you work it out. Took me years ago I understand your pain!

I’ve always had loose stools, but since my hysterectomy, generally they’ve been a lot better. Still have periods of severe diarrhoea, which I can’t see a pattern or reason for, but not all the time now.

Thank you, it's the anaesthetic that I am worried about more than anything, I have only had one GA before and I hated everything about it and really do fear them. I will ask if I can have a chat with the anaesthetist when I get my pre-op appointment.

Thank you, I really do need to try acupuncture this year, even if it's just to help relax me!

I very much worry about OC. That is the problem with suffering from endometriosis and adenomyosis, often CA-125 blood results can show up high due to the inflammation from these issues. My sister had to have an emergency operation a few years ago, her CA-125 was high and there was a 'mass' on one of her ovaries, they warned her it could well be OC. Turned out to be a huge endometrioma and her endometriosis was discovered this way.

Nevertheless OC is still a huge concern for me especially as I have endo (my specialist told me endo puts you at a greater risk). I did request a US scan 6 months ago as it's been a while since my MRI scan. My ovaries were noted as normal both times but I still do worry - A LOT!

So sorry to hear your mum's OC was missed, that is the concern regarding IBS, I have heard of too many people who's bowel cancer/OC etc was dismissed as being IBS. My own MIL died after being dismissed for over a year by her GP. They were adamant her neuro-endocrine small bowel cancer was IBS (even though she had never suffered from any gut issues at all prior to her cancer symptoms).

I really feel for you, sorry you are struggling so much, it is so draining isn't it?

Antibiotics definitely play a huge part. My gut issues started to ramp up after some dental treatment and a dental infection about 10 years ago. The dentist put me on co-amoxiclav and I am certain things started to go downhill after that, then throw in perimenopause, my mum's illness and everything else life chucks at you mid-life and I am certain it all contributed to my gut dysbiosis.

I have just started with some S Boulardii this week in the hope I may see some improvements.

I have an appointment with my new GP on Friday

Good luck with the new GP, I hope it goes well, fingers crossed for you.

The more I read about MCAS the more I can relate. I am going to try an anti-histamine diet this month and hope that I see some improvements.

I always feel better straight after my period, then ovulation comes (which has always been super painful for me) and it all goes very downhill from there and for the last few months I seem to be experiencing more urgency and diarrhoea during my period (even though I don't bleed due to the ablation). It's so frustrating. Careful what you wish for and all but Menopause can not come sooner for me. I have had years of horrible gyane issues.

That's interesting. It's really very frustrating when a diarrhoea attack comes and no idea why - it always throws me off.

I'm so sorry to hear about your poor MIL. Glad you've got the OC thing on your radar, although I wish it didn't cause you stress - I worry constantly about OC too, I had elevated HE4 levels last Jan and spent several days in hospital having scans before they concluded it was a false alarm. I'm sure worrying doesn't do our guts any favours either but it's very hard not to 😬

I really feel for you, it's so hard not to feel concerned especially when tests come back elevated and your poor mum had OC, that must have been such a stressful time for you. Stress definitely does my digestive system no favours at all.

Yeah it's exactly the same pattern for me. It all goes downhill from ovulation until next period.
I'm speaking to mcas consultant about hrt in a couple of months. She said there is a way to.take it to flatten out the histamine spikes, which would be great!

Oh that's interesting, good luck, I hope it works out well for you.

Do you see your MCAS consultant privately? I really need to look into this more.

For @MuddyDogWalk and anyone else interested. DS whose issues I've mentioned thoroughly investigated twice came to visit this afternoon. On everyone's behalf I grilled him.

So he's discovered like us onions, garlic etc caused issues. Ditto lactose (which is in a lot more than you think). Plus the usual culprits. He's tried the fodmap too.

Conclusion he's on low dose of amitriptyline. Avoiding gluten. But the biggest surprise was he's started taking lactose tablets recommended by a private GP because he lacks the enzyme to process it she believes. Last night before eating a curry containing cream he took a lactose tablet and slept like a baby. Whereas my DIL had a very bad night digestion wise.

He and DIL did IMO a very silly thing a few months ago Got mounjaro prescription for a month to lose a stone each . His appetite disappeared, lots of nausea so really didn't eat which buggered up his stomach good and proper. Hence the latest attacks I suspect.

Anyway he's so much better once again.

I was going to ask if they have tested your gastric transit, it could be gastroparesis, are you quite flexible, hypermobile?

I'm very flexible and always have been. My son has suffered with joint hyper mobility and knee subluxations since he was a young child and my mum and grandad are/were very hyper mobile too (but certain my mum has undiagnosed EDS).

I've tried bringing this up with GPs in the past but they just fob me off and tell me that many people are a bit bendy (I score around 7/8 on the Beighton scale even now at 52).

How can I get anyone to take me seriously with this though? I really need to book a private GP appointment but I'm worried it'll be money down the drain.

Phone around the private sector. Find the right consultant. I did this with back issue and latterly hip replacement.

Do the research.

"Spire Manchester Hospital - Gastroparesis Network" https://www.gastroparesis-network.com/spire-manchester-hospital/

I get GERD and gastritis frequently and nothing has been found on investigation except for a mild irritation in my stomach. I usually have to end up taking a course of PPIs. I can link it to eating the wrong things, e.g. too much chocolate, fatty and processed foods. I am getting better at working out which foods I can safely eat. When acid and digestion are at their worst, I take DGL liquorice tablets from Holland and Barrett. They are chewable and they really sooth my throat and stomach (DGL is important because it means a substance that raises blood pressure is removed from the liquorice).
I hope you can find some relief.

Thank you. I'll take a good look tomorrow.

Yeah it's a private consultant. NHS are not good with MCAS unless you're very lucky!
PM me if you'd like details