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?

My son has had all the tests several times, ppis, diet changes but he still suffers. Stress work wise doesn't help. About a month ago they put him on amitriptyline. He said a couple of weeks ago that it seems to be working. He has ADHD.

Google it. Interesting results

I had similar gut symptoms with nausea & bloating for years leading to weight loss sometimes because of lack of hunger. I assumed it was IBS and never had any tests. In my late 40s, putting on weight easily led to me going low-carb & I noticed an improvement in gut health, particularly when I didn’t eat wheat. Now my diet is mainly plant-based & unprocessed. The only carbs eaten are oats. (I do eat dairy - kefir.) I have never felt as good gut-wise. Not sure if it’s due to giving up wheat & UPFs or whether it’s all the plants but a dietary alteration might be worth a try. Do you follow Professor Tim Spector’s research (Zoe) on the microbiome? I do wonder if a lot of gut ill health is caused by sub-optimal gut bacteria.

You've reminded me about something I read. About gut bacteria and viruses, food poisoning, etc. Knocking it about permanently. Friends big climbers climbed in Nepal. They picked up something which came and went gut wise for a year before the school of tropical medicine identified it. They've said 20 odd years later they still get attacks even though they eat very carefully

I had food poisoning three years ago. My gut just couldn't return to normal after four weeks the GP prescribed mebevererine to help it settle down which it did.

Antibiotics have a disastrous effect on me as do many other drugs. Never mind my food intolerances.

It's very boring
.

Gallbladder?

Also look up visceral hypersensitivity, v common in IBS suffers, v common to have in upper gastro too. Often feel normal physiological reflux and other things as pain or be more sensitive to these sensations. Can he treated with amitriptyline or that class of drugs, or mirtazepine sometimes better for nausea predominantly symptoms.

@UnderThePressure how were you diagnosed with your three diagnosis? Currently suspect SOD for me but no changes in my liver tests so unsure (but consultant suspects as we've ruled out most other things!)

I was diagnosed with SOD type 1 years ago after severe pain reactions to opiates, I mean pain so severe it put me in A&E via an ambulance. The pain was the worst pain I have ever experienced and that's after giving birth. Bilirubin through the roof during the pain but that's the type 1 part, you can be diagnosed with no liver changes I believe. Eventually had to have the muscle cut during ERCP. That wasn't a cure though.

i got SIBO after a bog standard tummy bug. 3 years of diahorrea and horrific pain. all sorts of tests, ended up with suspect endo recurrence with bowel involvement.
Saw a private gastro, in desperation quite franky, she happened to ‘believe in it’.
course of antibiotics and it went.

later told by a menopause specialist nurse it’s not uncommon in peri/meno to develop it. Just another women’s problem that’s ignored!

Apparently reflux often caused by low acid. Research this one. I'd try having a grapefruit in mornings and see if this actually helps!

Similar story to me, but turns out, with a chance encounter with aspirin and an allergic reaction, I am Salicylate intolerant. Worth checking it out, as certainly helped me. Avoiding UPFs helps too.

I have taken Nortriptyline in the past but my mum's consultant (mum has advanced Alzheimer's disease) advised me to stop taking it. Mum was on Amitriptyline and he says it could be one of the causes, it's an anticholinergic drug which are linked to dementia. I came off as I want to lower my risk as much as possible. Adhd is also linked to dementia which tbh scares the life out of me so I'd rather not take any anticholinergic drugs as I age (risk is higher the older you get).

Problems can be caused by functional issues. In other words there is nothing wrong structurally or metabolically, but things simply do not function properly.
It is frustrating because finding a simple structural cause opens the door to clear solutions, whereas a functional problem needs a bit if trial and error to establish triggers and ways of alleviating the problem

This way of eating is what I am hoping to aim for. I do follow Zoe and Tim Spector on SM. I had a gut microbiome test a few years ago and it did pick up high gut dysbiosis which I am not at all surprised about because my diet is very basic and very limited. I need to work on my fear of foods and introducing new stuff, every time I do and get an increase in gut symptoms I panic and revert back to my basic eating pattern again, my 'safe' foods which aren't safe at all and are probably causing half the issues!

This needs to be one of my main goals this year.

I definitely have high visceral hypersensitivity and have been trying really hard over the years working with my neuro-gastroenterologist with hypnotherapy, acceptance therapy etc but nothing has helped. I am going to look into vagus nerve stimulation next.

I can't take Amitriptyline (see reply further up) and all the SSRI's and SNRI's I have tried in the past have made my issues worse sadly.

I have had several US scans and they all say my gallbladder appears ok.

Oh, that's interesting. I use pepto-bismol and I believe that contains Salicylate?

Counterintuitive but the Atkins diet worked for me. No fresh or raw veg or fruit, any veg or fruit very well cooked, only hot drinks, no cold drinks, cut out tea (esp green tea) and coffee and drink miso soup instead. Also acupuncture. The only fruit I could eventually eat was dates and bananas. I didn't eat an apple for about 5 years! Oh and honey bush tea - it's very soothing on the stomach.

O he exactly this including negative tests for coeliacs.

decided about 8 years ago “just to try cutting out wheat”

1 week later I’ve been clear of symptoms ever since.

occasional reflux but I’ve identified that’s related to too much dairy ( specifically cream and too much milk)

It's a very low dose and not taken permanently.

Mine was only 10mg but mums neurologist told me to come off it. I'm too scared to take it again tbh so I'll have to try and find an alternative.

They took biopsies for coeliac yesterday but regardless of the results I've going cold turkey on wheat/gluten from today just need to find a way not to fall off the wagon as I usually do.

Did you find the acupuncture really helped? It's something I've wanted to try for a while but it's so expensive.

Justasking111 - poor you!

MuddyDogWalk - sorry to hear about the dysbiosis but good you are considering this angle. It seems the gut function is complex and many variables & diagnoses to consider! Good luck!

Thank you , it really is a very complicated part of the body isn't it? I think I need to tackle it from multiple angles I think my gut issues are caused by many different things.

Problems can be caused by functional issues. In other words there is nothing wrong structurally or metabolically, but things simply do not function properly.
It is frustrating because finding a simple structural cause opens the door to clear solutions, whereas a functional problem needs a bit if trial and error to establish triggers and ways of alleviating the problem

Two areas to explore:

-chronic stress. A friend of mine had issues similar to you while caring for an elderly parent. All the symptoms cleared up completely a few months after her parent died.

-gynae issues. I had nausea, vomiting in the night and in the morning, IBS type symptoms for about seven years (five year really badly) and every doctor said it wasn’t related to gynaecological issues which were severe pain, large fibroids, heavy periods, flooding, ovarian cyst, but as soon as I had a hysterectomy they all stopped and I got my life back.

good luck