Am I going crazy or am I being fobbed off by gastro consultant?

[Stomachpainagain]

I have had gastritis symptoms for 3 years. Saw a gastro consultant 2 years ago who did a gastroscopy and was all normal. He said it was "functional dyspepsia". I was getting constant nausea, bloating, lack of appetite, burning pain in stomach. Said just to take Gaviscon Advance. This has kept symptoms to a manageable level but I continued to have constant stomach pain, heartburn and reflux.

Then 6 months ago I had a massive flare. Felt very sick, huge bloating, couldn't eat, really burning pain. Took a home H pylori test and it was strongly positive. GP gave me antibiotics and PPIs and I felt about 80% better. Repeat H pylori test came back negative. A month later GP told me to stop the PPIs and the pain came back immediately but not the bloating/nausea etc. Went back on PPIs but still had constant burning pain.

Got referred to same gastro again. He said it couldn't have been H pylori as it is rare in the UK and people only get it in developing countries. This goes against everything I've read and also the fact that I had a strong positive test, felt better after antibiotics and then tested negative.

Took a FIT test on gastro's advice which was positive for blood in stools. Was then scared about bowel cancer!

Had a gastroscopy and colonoscopy. Colonoscopy was normal. Gastroscopy showed erosive duodenitis. Looked up the symptoms and this matches the burning pain and how I have been feeling. Also explains the positive FIT test. At the time of the testing, the consultant said it clearly looked like coeliac disease and that he had taken multiple biopsies.

Now the biopsies have come back negative for everything and the gastro consultant is saying that there is nothing wrong with me and the erosive duodenitis was temporary and due to the laxative drink for the colonoscopy. This makes NO sense to me.

The symptoms of erosive duodenitis match exactly how I have been feeling. And it can happen after an ulcer caused by H pylori which is what I personally think happened. But he is insistent that I DIDN'T have h pylori in the first place (I suspect this is because he didn't test for it when I saw him 2 years ago so doesn't want to admit I might have had it for the last 3 years and he didn't test me for it) and that the erosive duodenitis that showed in the gastrocopy (I even have the photos!!!) was somehow caused by the colonoscopy drink I had 24 hours before.

What is going on? This consultant is actually really nice and listens well and isn't generally dismissive. But I feel like I can't believe anything he says as it makes no logical sense to me. I just don't understand what is going on here. I have a follow up with him tomorrow and need to figure out what to say to him.

Any advice would be much appreciated!

Could you have stomach ulcers at the moment?

I had a stomach ulcer caused by H pylori which is certainly NOT rare in the UK. Of course you can also have stomach ulcers without H pylori.

I had the same symptoms as you.

He sounds like a plonker. You sound correct. Get retested as you may be reinfected. H Pylori is very common in the UK

He sounds like he's trying to cover his own back in case you put in a complaint about your original referral to him. I wouldn't listen to a word he says. If he said he could see clear coeliac damage, have you ever had a blood screening for it? I'd go GF for a trial period of 6-12 weeks, it's worth a shot because he's not going to concede to anything you say and getting a second opinion is like gold dust.

If coeliac is a possibility don’t go GF before the blood test. You need to eat the equivalent of 2 slices of bread for 6 weeks before the blood test to ensure it shows up correctly

I had my child tested for coeliac and stupidly cut out some gluten before her test

The gastroscopy showed no ulcers but erosion of the duodenum. So irritation/damage to the lining of the duodenum.

The coeliac biopsy and all the other biopsies came back negative.

Is it at all possible for the colonoscopy laxative drink to cause erosive duodenitis? I just don't think it is.

Also biopsy for h pylori was negative so I definitely don't have it any more.

I have been eating gluten so the coeliac biopsy will have been accurate.

I have a similar issue.
I have a long ongoing history of upper and lower gut issues. I've had 2 colonoscopies and a gastroscope and all tests have come back (including coeliac and h pylori) as normal. Gastro keeps saying it's functional dyspepsia plus IBS.

However, I had a pill camera endoscopy 2 years ago. That came back clear. A few months later I requested a copy of the images and it was noted that I had a raised erosion in my stomach. When I asked my gastro about this he said the same as yours, more than likely to have been caused by the laxative I took for the procedure and it would most likely be a temporary thing.
I'm still having daily gut issues so am not sure what to think tbh but I think I'll do an at home h pylori test to see what that shows.

Interesting that he said it could be the laxative drink. I just don't see how though and all the symptoms of erosive duodenitis fit with mine.

I felt the same when he said that to me, I just felt he was fobbing me off tbh (I not sure that I have a lot of faith in my gastro if I'm honest). I now worry I have this area of erosion sitting in my stomach getting bigger!

Yes exactly and now when I feel the burning pain I can also see the erosion in my mind's eye that's causing it! Doesn't help that I have the photographic evidence!

I think if he hadn't told me that H pylori is rare in the UK I would be more inclined to believe him. Because I've known loads of people have it and everything I've read says it's common in the UK. So now I'm doubting everything he says even though he is actually a really nice doctor.

I have about as much faith in my gastroenterology consultant as I do in Mr Bean being the second coming of the messiah. Last time I had an appointment, after 3 years of severe symptoms being dismissed as 'a bit of IBS', I fainted in the overcrowded, unventilated waiting room (he was running 80 minutes behind), and the nurses went and told him that I had collapsed. He said to the nurses I had to 'wait my turn' - I was on the floor at this point - and they had to go back and tell him I was being taken downstairs in a wheelchair to some fresh air, close to minor injuries if needed (I'd hurt my hip hitting the deck). He didn't come out of his office at any point.

He struck me off his list and I was DNAed (ie marked Did Not Attend). My GP will have to make a new referral, and the consultant can refuse it if he chooses. (GP not impressed btw).

OP, I agree with you that the service you are receiving sounds 2nd rate. If the consultant is as pleasant in person as you say, I'd smile and ask if he'll kindly allow you a 2nd opinion, either at the same or a different hospital in your region. (Don't patients have a right to ask this now? - PALS should be able to answer that for you if you give them a call/email. I think I'm going to have to.)

p.s. I have found significant relief meanwhile through following the Monash University low-FODMAP diet, which is about exclusion and gradual reintroduction of foods.

I've been seeing him privately which is such a different experience to the NHS as you get up to 30 min appointments and so have loads of time to ask questions and discuss things. Your experience sounds awful @JanuaryCrow . I can't believe they DNA'd you after that!

I have tried different diets and have found that nothing males any difference which is a relief in some way as I'd prefer not to have to restrict my diet.

At least the treatment for chronic duodenitis is what I'm already on so even if he got the diagnosis wrong I'm being treated for it. I just don't know why it's so chronic and not improving though. I wonder if I should ask about a repeat gastroscopy in 3-6 months.

I think we may have the same consultant! Mine is a lovely guy but comes out with some ridiculous ideas. He told me the best way to improve my symptoms was to retire (I was 45 at the time).

Are his initials AH?

No, mine is based in Essex.

So do you really think the laxative drink could cause duodenitis? It doesn't seem logical when all my symptoms point to it being chronic duodenitis, not something that happened 12 hours before the colonoscopy!

Ive seen loads of patients with H Pylori in the UK (nursing) Id get a second opinion.

@Stomachpainagain I'd be paying someone else I think.

https://gutscharity.org.uk/advice-and-information/conditions/helicobacter-pylori/#

No, no way.

I've had treatment for H Pylori, so you can get it in the UK.

I worked with a dr who did a huge research project on h pylori in the mid 90's. I can absolutely assure you there were plenty of people around Leeds who tested positive for it on his trial - not rare at all

I worked for several gastroenterologists. There were some good & some not. I'd find another dr if I was in your position op x

You realise he’s talking utter shite don’t you? H.pylori is more common than you think.
I would see someone else.

I had exactly this following severe H pylori infection (immunosuppressed).
I was put on PPIs to suppress the acid and, most importantly, a course of amitriptyline to soothe and deal with the nerve pain (chronic pain syndrome) caused by the erosive gastritis and duodenitis. The point being that stomachs are very susceptible to chronic nerve pain even when infection and excess acid are cured.

So I had the follow up appointment with him and what he said did seem to make sense. He said there was no inflammation found in the biopsies and the appearance of the erosion showed that it was temporary. He seemed very confident about that and the way he explained it did seem to make sense. He said if there was chronic erosion he would have been able to tell by the biopsies.

He said starvation plus the laxative drink can cause this appearance of mild erosion in the duodenum.

He thinks my symptoms are caused by nerve pain/overexcitabke nerves in the gut. When he did the colonoscopy he said I had visceral hypersensitivity which means that any time the camera touched the bowel wall I was in a lot of pain. Thankfully I don't remember as I was sedated - he said they had to keep sedating me due to the pain. I did remember waking up in the middle of it very confused and then they put me back to sleep again. So he thinks the same is happening all along the stomach/duodenum. etc.

I have had chronic nerve pain before as I had painful bladder syndrome after a bout of UTIs that took years to clear up. I've also been really stressed and that fits with nerve excitability.

So I'm going to continue with the famotidine but also try to remove stress as much as possible (easier said than done). He also suggested trying a SSRI to see if reduced anxiety helps as well.

So as much as I disagree with him about the h pylori I think the rest of what he said does make sense. Again, he was really thorough and kind and spent ages answering my questions so despite the h pylori comment I don't feel like he was fobbing me off.