To ask for help with a medical diagnosis?

[Nidan2Sandan]

Okay, not an actual diagnosis as I realise this is an internet forum blah blah blah. But I'm at my wits end and I hoped with the variety of people on here that someone, somewhere has the same issues and can point me in the right direction. So here goes.......sorry it'll be long

I have always suffered with stomach ache. Right in the middle where my solar plexus is. I remember as a child rolling in a ball, screaming in pain. My mum describes me as a baby doing the same, pulling my legs up and just being inconsolable. But it didnt happen often, once every few months and would last for a few hours at most.

As I've gotten older it's gotten worse, to the point the pain is almost permanent. To describe it, it feels like my stomach is being eaten from the inside. Most of the time it's there just as a dull ache, but I have what I call "episodes" where its debilitating agony and I will often feel sick, dizzy and just moving/talking hurts.

I'm an active person, karate instructor, I run, i have 3 kids and the stomach pains are really starting to affect my daily life more and more each year. I havent been able to teach at my karate club for the last 2 weeks and had to leave work early one day this week.

I've seen doctors and hospital consultants. I've had a camera down the throat (endoscopy??) and an ultrasound. All sorts of tests etc.

So far I had a week in 2010 where the hospital thought I had an infection, maybe gall bladder or pancreatitis and was kept in for a week. I showed infection markers but everything else was fine and I was sent home (I was 12 weeks pregnant with my second DC). Ultrasound was unremarkable and endoscopy showed no issues.

I've had lansoprazole, esoprazole, omeprazole (excuse spelling, I'm not 100% sure on how to spell these) and over the last few years given amitriptyline for what Drs now say is a chronic pain condition with no known cause.

I take rennies and sometimes they help, often they dont but it feels acidic, like I say, like my stomach is being eaten away. Oh and when in pain, I burp like you wouldnt believe!!! Again, makes me think stomach acid.

So, I have Drs saying unknown chronic pain condition. Medication does fuck all and my life is slowly being taken over by it. I'm worried about the next years.

Oh, should also say i have had allergy testing and avoid foods i cant eat. Have tried gluten free, FODMAP etc to no avail.

So, any bright MNetters have any ideas? Is there a Dr on here that may have a suggestion?

Have you definitely been tested for H pylori? I expect you have, but worth checking. I am so sorry you have been suffering all this time. I guess that hiatus hernia has been excluded too?

@endofagain

Have you definitely been tested for H pylori? I expect you have, but worth checking. I am so sorry you have been suffering all this time. I guess that hiatus hernia has been excluded too?

Yep, been checked. At xmas I was found to have some bacteria after having given a stool sample and was prescribed antibiotics and told to increase the lansoprazole to a double dosage whilst I was on them.

Hernia excluded.

I was checked for chrones disease too (sorry, not sure of the spelling) and was told I was borderline but not enough to suggest I had it and my bowels themselves are absolutely fine. Constipated occasionally but nothing major.

Have you tried taking probiotics ?

Have you been checked to make sure the h pylori has been fully eradicated?

And checked for coeliac disease?

@WrongKindOfFace

Have you been checked to make sure the h pylori has been fully eradicated?

No, not since xmas. I went back to my GP who just said it will have been sorted by the antibiotics and it's a chronic pain condition. In fact, I got the sense he tried to say it was all in my head.

Yep, been checked for coeliac and all clear.

Endoscopy showed no signs of ulcers which I think the h pylorican cause?

Have you been checked for SIBO?

Have you checked the allergy route? Removing certain food groups etc

Ulcerative colitis?

I don't know much about it, other than that it's an inflammatory disorder that can cause stomach pain.

Have you tried probiotics ?

@Sorchamarie

Ulcerative colitis?

Been mentioned by GP before but dismissed after the endoscopy.

@Bontanics

Have you checked the allergy route? Removing certain food groups etc

Yep, been down for full allergy testing and removed food groups did FODMAP etc.

Discovered minor intolerance to tomato and strawberry and an allergy to peanuts, almonds, coconut, and mushrooms.

@GoodnightGrandma

Have you tried probiotics ?

I used to eat those activitia yoghurts but havent had anything for years. Maybe worth a try again!

Thank you to everyone who is offering suggestions, I really appreciate the input. Having spent a good 25 years trying to get this sorted as you can imagine I have tried and been referred for all sorts of things, tests, etc over the years.

Have they checked for malrotation of the gut? I think this normally only shows up on a ct scan. I have this (discovered by accident during surgery for something else) and have been warned severe central abdo pain was a sign it was causing obstruction (which can be acute or chronic). It’s very under-diagnoses.

Did you do FODMAP with the support of a dietician (not a nutritionist)? Maybe contact someone like City Dieticians - they might have some other ideas? I only recommend them because I've seen Sophie there before and she's brilliant.

Have they asked you to do a potato diet? I was told to eat only potatoes for a week and then gradually introduce one new thing at a time until I had symptoms again. It's a pain in the arse to do but if you're reacting badly to a specific food or food group then it is effective in identifying what it is. You get very good at cooking potatoes in different ways!

On the other hand I knew some who used to drink pure aloe vera juice. Most disgusting thing ever but he swore by it.

Also, things like endometriosis? No idea how young that can show up though.

H pylori is tested by stool sample, but you have to be off certain meds like omeprazole for it to show. You need to have not taken the meds for I think 12 to 14 days before the sample, or the H pylori can be masked. I assume that's what you did though. I know GPs can forget to mention these things sometimes.

@ArcticLemming

Have they checked for malrotation of the gut? I think this normally only shows up on a ct scan. I have this (discovered by accident during surgery for something else) and have been warned severe central abdo pain was a sign it was causing obstruction (which can be acute or chronic). It’s very under-diagnoses.

I've never even heard of this! Can you tell me more about it?

@Sulusu

H pylori is tested by stool sample, but you have to be off certain meds like omeprazole for it to show. You need to have not taken the meds for I think 12 to 14 days before the sample, or the H pylori can be masked. I assume that's what you did though. I know GPs can forget to mention these things sometimes.

Yes, I came off my meds before hand.

@PinkFootstool

Did you do FODMAP with the support of a dietician (not a nutritionist)? Maybe contact someone like City Dieticians - they might have some other ideas? I only recommend them because I've seen Sophie there before and she's brilliant.

I was given a leaflet by the doctor, so utilised lots of online support groups for help.

I avoid a lot of food I know can make it worse anyway already. So anything greasy, spicy. Sometimes excess dairy can make it worse, ironically sometimes milk can sooth it.