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 have had ibs-d all my life varying degrees of stomach issues for around 35 years now. I am constantly back and forth to the docs it’s debilitating. I have had all those tests and more . Always nothing to work with . My last time round I saw a junior consultant who advised me to go back to my GP and request assessment for adhd / autism . I thought he was nuts until I looked into the stomach issue links with ND . My GP 100% agrees with this consultant and I am awaiting assessment. I know it sounds odd but maybe look into it as I have never met anyone who has the same issues as me but my now teenage daughter is having the same and she has been also advised to assess. Good luck OP !

Oh! That's interesting, I was diagnosed with inattentive ADHD back in March - I'm 52.

I always knew autism and gut issues were connected, I was unaware ADHD could be too.

Off to Google.......

IBS is a gut brain interaction disorder, and so is functional dyspepsia. I think there's a strong chance that is why you are having gut symptoms but no obvious physical cause.

It doesn’t seem like they have looked at the speed of your stomach emptying? That could be a potential cause — gastropareisis or functional dyspepsia.

I just wish I could find a way to control it, especially the nausea. I've tried everything recommended but nothing is helping right now.

Thanks. I will ask my GP about that.

Perimenopause can be a contributing factor?I’ve also suffered gastrointestinal symptoms for most of my life, I’m also ND. My symptoms ramped up a couple of years ago when the hot flushes and wonky periods started. I feel nausea and bloating from waking until around 1/2pm, I have no appetite until mid afternoon. I’ve tried eliminating foods, eating a snack before bed, going to bed on an empty stomach, I’ve tried pretty much everything. I now just accept it and eat breakfast at 3pm. I’ve also been on PPI’s for 25 years, stopping them makes no difference. I’m sorry I have no answers but can sympathise.

You need a nutritional therapist not a doctor.

I'd say it has to be something you're eating or drinking, if it isn't a 'physical' problem.

I was having some weird symptoms last year: acid reflux, burping like crazy, feeling sick, terrible headaches, and spent ages trying to work out what it was. Realised that, somehow, I'd become intolerant of a whole list of foods and various dietary 'chemicals' and I had to work out just what it was that was setting me off. And, I did. I had become 'histamine intolerant'. Apparently it's a another little gift mother nature gives to some women around the time of the 'change'. Nobody told me! Now I avoid those foods that trigger me. There's various massive lists around online of foods to avoid, but not everyone reacts the same way to the same things and as it's a 'build up' type of issue, some days you can eat the peanuts and have no issues, but on day three, after eating soup with stock cubes, for instance, the symptoms return.

Personally, I can't eat lentils, peanuts, anything with artificial caramel, malt vinegar, mustards, loads of hard cheeses, stock cubes like Oxo, the list is endless. If I get symptoms, then I take an OTC antihistamine. But, since I've been avoiding those foods, if I do have a sneaky bit of something, I can tolerate a little bit, now and then. It's crazy. If I reach my 'safe' level of histamine, I again start up with the weird symptoms, face flushing, headaches, burping, acid reflux, etc. I take two paracetamol and an antihistamine and that seems to work fine.

It might not be the same, for you, but, might be worth looking into.

Your routine is identical to mine. Did you find it all became much worse during perimenopause? Mine definitely has.

Have you tried hrt?

I do wonder what's in my diet which is plaguing me.

I keep a food and symptoms diary and need to painstakingly go through this last year's entries. I know it's not what I drink as I only drink filtered water. I have removed lots of foods and follow the low fodmap diet but maybe it is something like histamines? I have some other symptoms (headaches, itching, nasal congestion etc), I keep thinking it's peri but maybe it's something I'm consuming too?

I'll have to really work on that this year.

I'd love to see one but can't afford it sadly. All the ones I've contacted charge so much.

Id put money on it being your diet tbh. Can u put up a typical days food?
I do have an ulcer and a hernia and while I am on meds for the ulcer I also am fully aware that some foods trigger reflux and the hernia. Making some changes made a huge difference to me.
Specialist said as I dont drink or smoke then my diet wldnt be a problem but tbh I knew some things hurt it and other didn't so withb the help of a gut nutritionist I worked out a better diet for myself. Mine is free with my private health care which I appreciate makes a difference.

I take omnaprazole but my digestive issues get worse when I’m stressed, then I get more stressed about the digestive issues so it’s a vicious circle.

Try to relax about it all. Tests have come back clear. Try not to hyper focus on the symptoms as I do sometimes. I bet if you consciously relax your shoulders, they’ll drop a mile.

I eat really carefully (and boringly). I've worked with a NHS dietitian and follow a diet based on low fodmap but also as low acidic diet as possible.

'Breakfast' is not often till midday as I often feel too nauseous to eat before that. It will often be gluten free home make flatbreads or a couple of rice cakes with some kind of meat (ham, turkey etc).

Lunch is usually gluten free orzo pasta (made with rice and quinoa), a small amount of vegan mayo (I don't tolerate eggs), green leaves and salmon or turkey - that's if I eat lunch. Due to my unpredictable bowels I will often skip lunch on days I work or n ed to go out anywhere.

Dinner will be potatoes of some kind (not fried), veg such as carrots, green beans, parsnips and meat or fish of some kind.

I don't eat any fruit as I find them too acidic, I don't eat cakes or biscuits and there are many foods I just can't seem to tolerate these days. I only drink filtered water. My diet is very boring, I cook different foods for my DH and DC as I don't expect them to eat my plain diet. I keep a food diary but am failing to see a connection to anything I'm eating as I can eat the same thing days on end but have varying levels of symptoms during those days, it's very frustrating.

I admit that I do get very tense, the nurses today during the endoscopy were telling me to drop my shoulders, I genuinely had no idea they were up behind my ears lol.

I find it very hard to relax (not sure if my ADHD has anything to do with that?), I've tried yoga many times, hypnotherapy, various therapies in living reflexology and acupuncture and I listen to sleep stories every night to help me relax but I still find it very difficult to loosen up. I'm like a coiled spring, you can stretch me out be as soon as you stop I'll ping back to my default of tense/tight.

I’m similar. I assume it’s a case of all the symptoms are illnesses/ailments in and of themselves and each one exacerbates the others. Never been investigated though- in my experience of being ill with other non related things it’s a waste of my own time approaching medical professionals (it’s either in my head or I’m completely fine as I look like I am)- I just pop indigestion tablets like sweets.

I’m sure you have thought of this already but have you tested for lactose intolerance? I was fibbed with IBS but I don’t have it, I am lactose intolerant.

I am similar - had a colonoscopy and an ultrasound scan and nothing showed up (a small polyp was removed when I had the scope).

But my bowel or rectum or both is clearly inflamed. I tried Symprove and it worked wonders to start with...I sang its praises on here...and then the symptoms came back worse than they had been before. I stopped it for a while and things got better but now they've come back again (before Christmas so not down to rubbish food).

I am assuming it's something to do with menopause/hormones or lack thereof affecting gut motility. I can't pin it down to any sort of food or drink.

I might try the Symprove again but at a low dose to start with. If it doesn't improve I might investigate HRT.

A work colleague suggested this to me as well, I am going to arrange a test as it's about the only thing that hasn't been tested for, my thyroid is ok, I am not coeliac and various other tests came back negative too.

ive cut out dairy. big difference in my sinuses.

Also i go to private acupuncture. Helped greatly and rebooted my system.

It’s so very frustrating isn’t it?

I’ve not touched any dairy for at least 15 years as I found milk and other dairy products would go straight through me.

I am convinced my hormones must be playing a big part in this exacerbation of my issues since hitting my mid 40’s. I had a complete respite from my IBS when I was first pregnant 20 years ago, it was bliss.

I want to try HRT but I’m worried as my mum was diagnosed with breast cancer last year and I have endometriosis and adenomyosis and worry the hormones might feed it more.

I hope you find something to help, it’s no fun is it?

I am going through this with my dd at the moment, she is severely autistic and we are waiting for an appointment for a camera to be put down into her stomach. She has lost a lot of weight. She burps a lot, gets pain/heart burn and ends up refusing to eat. We have tried all over the counter indigestion type tablets with little change. We have noticed that dairy makes things worse so have reduced dairy intake but it’s not got rid of the symptoms completely.