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?

It’s almost certainly linked to your hypermobility. Ask to speak to a different GP. Take a load of EDS info with you and ask to be referred to a rheumatologist (it was my rheumatologist that explained about IBS/Gastroparesis to me, for me a low FODMAP diet makes a huge difference) You don’t need to spend money on private appointments, your GP has to refer you if you give them enough evidence. If you are scoring 7/8 that’s significant and should be taken seriously.

Thank you, that would be great.

I have an appointment on Friday, I will speak to her about it then so fingers crossed.

@nomoremsniceperson - do you have the name of those probiotics? I'm a 3+ year sufferer of GORD and despite all tests/medications/diets it's still not solved the issue. Even my GI has no idea what's going on as my whole digestive system is affected by 'something' which is causing no end of issues.
Peri/covid/stress did a number on me and I haven't been the same since.

I got these, I actually got them to help me shift a couple of pounds but found they cleared up my nighttime reflux https://sheko.com/products/8595457769802 - I'm in Germany though, so just look at the ingredient list I guess and copy that - this time I bought a different product but with the same probiotics, I'm hoping it'll work just as well

Look up gastroparesis.

I was also thinking MCAS but PP have said more. Prostaglandins have effects such as you describe and if you are prone to being sensitive to these anyway, hormonal fluctuations push them up and down - even rashes, unexplained bruises, and chemical or smell sensitivity can flare and go again in a flash, without hanging around for an explanation.

Although we don't have the same type of symptoms, my Mum has been affected by the gastro side of this and has been investigated many times for possible cancerous issues but over 40 years, this has never been detected despite all the symptoms really matching the descriptions and presentation. Mine are more as above - hormonal and showing as a raft of allergy-like autoimmune things that don't seem to be due to any permanent allergies.

Some things containing lactose that’s aren’t specific dairy products can set me off too. Milk is an ingredient in so many things!

As I follow the low fodmap diet I'm quite fastidious over label reading. I am fairly certain I avoid any milk or lactose containing products and they are usually well highlighted on ingredient labels these days.

That does make a lot of sense to me. I do believe I am super sensitive to prostaglandins (or they are simply at high levels in my body?). My symptoms are so so much worse during what would be my period (I don't bleed due to the uterine ablation I had in 2022 but I still have a cycle) and ovulation is just as bad and always has been. I am currently in the ovulation part of my cycle and have been in so much discomfort the last few days with awful nausea, indigestion, pain and bloating.

Towards the last part of my cycle and especially since being in peri I suffer a myriad of weird symptoms as well, exactly how you have described with the bruising, high sensitivity to smells and chemicals etc and it leaves me feeling quite rotten.

Progesterone triggers acid reflux by relaxing the lower esophageal sphincter (LES), the muscle keeping acid down, and slowing digestion, allowing more acid backflow, which is why heartburn increases in pregnancy, perimenopause, and with some hormonal therapies (HRT). Fluctuating progesterone levels during the menstrual cycle, especially the luteal phase (pre-period), and hormonal treatments can all exacerbate or cause new acid reflux (GERD) symptoms.

Also have you considered your gall bladder? Could definitely be a cause. You could get an ultrasound to check for gallstones and to check gall bladder health. You can also get a HIDA scan to check if gallbladder is working properly.

Sounds very tough and having to weather the smells/neurology/bruising phases is so unpleasant. I have realised I'm sensitive to progesterone as well because of adding up the times when I have attempted to take it in different forms. There have always been symptoms, but not the same depending on age.
I also am hacked off to know of ovulation symptoms now coming through (where I was not aware of them prior to late perimenopause). I hope you get somewhere with a knowledgeable medic.

My hormones are definitely exacerbating everything. Things were not great before but manageable, it all went crazy as soon as I hit perimenopause and just seems to be getting worse now I am in my 50's. I live in hope menopause will bring some relief (whenever the hell that will be).

I have had many upper abdominal US scans and my gallbladder has always looked ok. I have had a SeCHAT scan but never a HIDA scan.

Thank you Ormally, not pleasant at all, is it?

No! Hang on in there, there must be something that can work but the route is a slog.