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 not touched dairy for many many years as I do know it’s definitely one of my triggers.

I really want to try acupuncture as I have some gynae issues (endometriosis and adenomyosis) and have read that acupuncture help with the pain from these conditions.

Bless her, it’s just awful to live with every day. I hope you have some answers and relief for her soon.

I can understand her not wanting to eat, I have regular heated discussion with dh, he tells me to eat more regularly but he just can’t understand it’s not that easy to do when you feel so bloated and nauseous and eating causes pain. It’s like telling someone with a sprained ankle to go for a jog around the block.

Have you been tested for SIBO? Small intestine bacterial overgrowth? They can do a breath test and give antibiotics if positive. I know someone who had all these symptoms and this is what it was.

I suffered the same as you for many years. I was finally diagnosed with upper gastric issues (chronic pancreatitis, hiatus hernia and sphincter of oddi dysfunction) as well as bile acid malabsorption (which I know you don't have). It could be worth getting your biliary tree checked for a blockage.
My daughter also has Gastroparesis and I wouldn't wish this on anyone, but this can also cause the sympoms you have.

My mum has terrible digestive issues and it turns out she is intolerant to lactose, potato, and the nightshade family of foods. Only found out in her 50s.

Functional dyspepsia is the diagnosis you describe which may be helpful in looking for support and ideas on how to manage it.

I’ve had digestive issues on and off for a few years. Mainly silent reflux, burping, coughing after eating, runny nose all the time, bloating and gassy. My diet was good and I couldn’t pin point any triggers. My GP eventually advised me to see a private nutritionist as the NHS would just give me PPIs which I didn’t want.
I started seeing one a few months ago and I’ve seen a big improvement. Over Christmas I relaxed a bit and had the symptoms return so I’m back on it!
It is expensive but I’d tried all sorts of avoiding different things, and reading lots of conflicting advice and was getting nowhere, so I’m glad I went ahead with it.

I’ve had all sorts of tests with no answers. I think there are a lot of us about with digestive issues. I guess the important thing is to rule out sinister causes. Then try and find out what helps. For me my motility is extremely low. I do think it’s maybe a vagus nerve thing.

Have you tried a low fodmap diet? I have the book low fodmap vegan - mainly because it’s easy to add meat and it discusses loads of fruit and veg etc :)

I did ask my gastro but she said I'd have to have some kind of serious health issues like diabetes or something to have developed SIBO.

Thanks, I'll ask my gastro about that.

Sorry to hear your daughter has gastroparesis, it's an awful condition. Does she have EDS? I have joint hyper mobility but I often wonder if I have eds.

I haven't eaten dairy for years but live off potatoes!

That's what I've been diagnosed with but have not had any luck managing it despite trying everything advised.

I think, moving into the new year, if I'm continuing to get nowhere with the NHS in improving my symptoms I'm going to have to save up and see someone privately like a functional nutritionist or someone similar.

I've been looking into the vagus nerve recently. You can buy those vagus nerve stimulators but they are hugely expensive. Wonder if they really work?

I've been low fodmap for quite a few years. Is it the Jo Stepaniak book? I got this for Christmas. I've wanted to go plant-based for years as I actually don't enjoy eating meat but have been too scared to go vegan incase the high fibre caused me to have an IBS flare up.

How has your digestion been eating this way?

Wow, this post, I honestly could have written it myself. I feel comforted I’m not alone. Can I ask how you identified your trigger foods ? I had identified tomatoes, peanuts and I have cut out most diary and all alcohol as my face flushes red and I feel indigestion creep in until I’m in pain with reflux . It’s a nightmare trying to identify the triggers over a day of eating on and off.

A bit random, but I had GERD symptoms, moreso at night. I was diagnosed with sleep apnea and the CPAP treatment has completely resolved the GERD symptoms.

After Covid I had very similar problems that lasted for ages. Somebody suggested green clay powder. Spoonful in water a couple of times a day. Stir and let it settle then drink the water (not the clay). Honestly I was desperate so decided to give it an go and it worked. I took it for three weeks and didn’t look back. I got it on Amazon (argyle verte). I guess it works like charcoal powder which is also good for ibs/stomach problems.

After all the many tests over the years and keeping endless food diaries . None of which showed any long term consistency. I had to manage the diarrhoea with fasting and Imodium . Last year I was advised to lose weight for heart health and after struggling to do so ( perimenopause age 49) the doctor suggested weight loss injections. I was terrified as I felt sure this would only increase my problems . I’ve been using them now for 6 months have lost 3 stone ( now healthy weight) but most of all they have relieved inflammation throughout the body so no abdominal pain or bloating . They slow gut motility down so I’ve had no diarrhoea since the very first injection. It’s been a game changer for me. I have an appointment in 2 weeks with my gastroenterologist to see what he has to say for the long term on regards to if staying on them long term is an option for me. They’re expensive but the thought of going back to how life was fills me with genuine panic.
I always believed I was lactose intolerant, gluten intolerant. Couldn’t stomach fruit and many veg . Since this jab I eat really healthily and I eat everything. Changed my life .

I’ve been told there’s no cause to mine, just one of those things though another doctor did say my hyper mobile joints can be linked (form of eds) but there’s no cure so little difference

That's interesting. I don't think I have sleep apnea but DH says I often snore a lot!

Thank you, I'll check that out.

I keep reading time a time again people saying the weight loss injections have helped their gut issues. I was talking to a guy a few months ago who said his years lomg IBS completely disappeared after being on them. I have a low BMI so they wouldn't be ideal for me. Shame they can't look into this more and find out what it is in them which is curing so many gut issues as a side effects.

I'm hyper mobile too, I think there is a definite link.