PPIs not working

[Jaby86]

Hi, I've been prescribed both lansoprazole (worked very well when I had reflux last year but it's come back recently and a lot worse) and omeprazole (currently on day 8) and the reflux seems to be getting worse. It was mostly a stomach pain and burning sensation at the top of my abdomen but it's not moving to my throat and I can taste acid in my mouth which is quite distressing. Should I give the omeprazole more time or go back to my GP? If PPIs don't work then does anyone know what the next step is in terms of treatment? I am also taking DGL liquorice before lunch and dinner, eating a bland diet and have removed all known triggers from my diet/raised the bed etc and using gaviscon advance of an evening Not sure what else I can do?

[Emaych61]

Have you had 24hr pH monitoring? Only reason I ask is that I was put on cimetidine (not a PPI but also used to control acid reflux) when I developed obvious signs of silent reflux. When I eventually got tested for acid reflux using 24hr pH monitoring (over a year later - thanks to covid) things had steadily been getting worse (head of bed raised by 5 inches when I started on the med; it was raised to 8 ins by the time I was tested). The test revealed that far from having excessive amounts of acid, the level was actually at the low end of the normal range, and that was a few days after I had to come off the medication in order to allow things to normalise. In other words I certainly did not need to be on any medication that reduced levels of stomach acid. It probably explained why things had been getting worse: having too little stomach acid can cause problems as well.

[Jaby86 in reply to Emaych61]

Thanks so much for your reply. I did consider low stomach acid but discounted it because the lansoprazole had worked so well the first time I had it. I'll ask my doctor about the monitoring so thank you!

[FarflameX in reply to Jaby86]

I don't know the rules here and I'm not a doctor, so I don't know what we're allowed to say regarding 'medical advice', but all I can do is relate my own personal experience.

I was in the exact same boat, taking endless antacids and PPI's and whilst they sometimes kept the symptoms bearable, all they were doing was masking the problem. Bearing in mind that I explained to my doctor that this all started after heavy OTC antacid use, you'd think the idea of low stomach acid would at least be considered, but it was just brushed aside and more antacids were advised. I just got worse and worse until I turned to a nutritionist who said it might be low acid rather than high acid. I came off the PPI's (without talking to my doctor, which is basically impossible now anyway since it's a 2 month waiting list where I live) and started improving immediately. I've remained on a version of a 'bland diet' anyway, since I prefer it now and I've made it far less bland with more variety. I'm still not entirely back to normal and I'm fairly sure that if I returned to a junk food diet the symptoms would return, but I'm much happier and have very mild symptoms if I eat sensibly and stay away from all antacids.

There are tests that you can do at home to check, though I'm not sure if they're advisable or even accurate. If your doctor is open to discussion, you should ask to see if you can have your acid levels checked. If they are too low, then I'm sure the doctor will agree that the antacid/PPI approach isn't going to work for you.

With this problem being so common now, I think the medical industry will catch up eventually and realise there's no 'one size fits all' solution to this. You need to be properly tested before being put on PPI's in my opinion (I wasn't tested at all and still haven't been).

[Emaych61 in reply to FarflameX]

I certainly should have had 24hr ph monitoring years ago. I’ve been having issues with this on and off for around fourteen years now, and over a decade when they finally got round to doing it.

I would love to see people being checked earlier for acidity levels, the problem is the issue is so prevalent that it couldn’t be done; there is a delay between referral for it and it being done now. So unless they come up with a much faster and reliable test that is accepted by the medics it’s just not feasible to test everyone. However, if someone doesn’t respond to PPIs or H2 receptor agonists (which is what I was on) or gets worse, they should be referred for it at once.

I ended up on cimetidine because I refused PPIs. Every time I’ve had them I’ve had a bad time with rebound at the end of the course. Given what we now know, I’m so glad I did that. As it was I had weeks of things getting notably worse (as in breathing problems after eating and drinking) before things began to calm down (I assume my system eventually adjusted to the reduced levels), though as I said above there was still a notable slow deterioration as the months went by.

I now manage with Gaviscon advance and by being careful with diet (and I’ve been careful with that for years). At the moment I’m going through a reasonable patch. One thing that seems to have baffled the doctors I have seen is the fact that drinking water on its own will cause issues. I have to drink water with a meal, or have some hot milky water (which my stomach will tolerate: tea and coffee is out - tannin and caffeine are no go areas) immediately afterwards. That goes against the normal recommendation for acid reflux sufferers of not having water whilst consuming food - but I don’t have a lot of choice. One more indication perhaps that I don’t have acid reflux.

[FarflameX in reply to Emaych61]

Your situation sounds very similar to mine, except I've only had this for about a year. I have/had very similar symptoms, i.e breathing problems after eating and problems brought on by drinking water. I don't hear these symptoms often, so it's good to hear them from somebody else.

Re : the medical industry approach to this, somebody once said it basically takes 10 years for the medical industry to catch up. This does make sense since they won't enact policies until they've carried out years of studies and research. Acid reflux is now very common and I suspect that the funding for it is increasing exponentially. I truly believe that within a year or two, the idea of too-little acid will be taken seriously. My doctor pretty much brushed it off as woo-woo nonsense although he did say that testing was available but didn't offer it to me.

The more I heard about too-little acid, the more it rang true with me. I brought this problem on myself through heavy OTC antacid use, due to eating very badly and trying to fix my heartburn with them. So it made sense that I'd damaged my bodies ability to produce acid and reduced the amount. And then, when it got worse, I just kept throwing more and more antacids at the problem, with the advice of my doctor. It did temporarily reduce symptoms, but never fixed the problem. So a couple of months ago, I just stopped them altogether but also switched to a VERY strict diet, with zero triggers. Basically, zero junk food. By doing that, I get only mild symptoms, and don't need the PPI's anyway. That also allows my body to finally heal and I can feel it happening.

It might be worth trying the home acid test, just two tablespoons of apple cider vinegar in a very small amount of water (about a centimeter in a cup, I think it's 50ml or so). It will burn a bit in the mouth and back of throat but shouldn't burn in the throat. If it does burn in the throat, i.e like heartburn, then you shouldn't drink any more. But if it doesn't, you probably have low acid. Bear in mind, this is a very 'woo woo' approach and I have no idea how accurate it is but it all makes a lot of sense to me. I now drink this before meals to give my stomach a bit of weak acid to work with and I do feel much better.

Also bear in mind, that if you have breathing problems like I get, acid in the throat, even ACV might make it worse since it activates the pepsins. The long-term goal is to get the pepsins to stay in the stomach where they belong. I don't find that the ACV sets it off though, just heavy meals and sleeping.

[FarflameX in reply to FarflameX]

btw, I also found that Gaviscon Advance worked. But I think long-term, it's probably making things worse. Impossible to say right now, I have some kept in just in case but for now, I'm off all of it and feel much better.

[Emaych61 in reply to FarflameX]

Testing for low acid/non acid reflux is only available in a few places. My gastro cons did know of one in a neighbouring county/hospital trust, but when he approached them it turned out the expert on the subject had retired and so they no longer offered it. I’ve now been referred to a specialist in London.

I only use Gaviscon advance in the evening before bed or if I have a bad patch after a meal (fortunately not common now). Breathing issues are not great as I also have asthma and it can be very difficult to distinguish which is responsible for any breathing problems I might have. I did find that a bout of covid earlier this year really upset things: for three weeks after the other symptoms had subsided I had issues with breathing after everything I ate or drank, even hot milky water which is usually as safe as things get! I did get through a lot of Gaviscon in that time.

Eating more than usual is guaranteed to set it off with me. For years now I’ve been eating smaller portions and taking my main meal at midday whenever possible (great for weight - a plus). That has helped a great deal. Every now and then I go through a phase when my breakfast will cause breathing problems for no apparent reason at all; at other times, indeed most of the time, my stomach is perfectly happy with it.

[Jaby86 in reply to FarflameX]

Hi thanks for your reply, it looks like it's difficult to distinguish between high and low acid from a symptom perspective but I've always thought it was high considering the PPI worked so well last time and I was only them for 8 weeks so not sure if that would then make me have low acid now? I removed all triggers but maybe I should also remove dairy? Although I don't have much and never had a problem with it previously. I feel very confused and feel like I'm throwing too much at it/doing too much research but I'm just so desperate to get back to my old self again. Worried that's never going to happen now! Sorry you have this too and thanks for your comments

[Emaych61 in reply to Jaby86]

You could try keeping a food diary. That can help to identify what is causing a problem.

[FarflameX in reply to Jaby86]

Totally understand. Personally, I find the opinions of other sufferers much more valuable than the standard views. Not to say that the medical approach doesn't offer help, but with symptoms so different and vague and crossing into other conditions, I think it helps. On the other hand, I totally get it that you've done too much research and can't see the wood for the trees. I was in exactly that place. And it's hard to tell immediately if something is working or not, so sometimes something seems to be doing nothing, but long run it might be helping, and vice versa. For me, I've opted for the holistic and natural approach and decided that I need to let my body heal itself. I was loathe to go on such a healthy diet because I was a junk food addict, but it's really helped. I'm still convinced that I caused this myself and junk food just wrecks my gut, leading to this problem. A couple of months of super-healthy food has really helped, to the point that I don't really think like a sick person any more and just get on with my life. Not focusing on it 24/7 helps too because of the reduced stress, so it all becomes a virtuous circle.

I'd recommend the super-healthy diet. I'm eating mostly veg (as many colours as possible) for my main meal, then a bowl of home-made-muesli which includes banana's, strawberries, nuts and oats, with oat milk, then a fruit salad later. I wouldn't touch any of this a year ago, so it's a miracle and I've lost 30 pounds in the past year, which helps. Oddly, I still have the fat belly, despite being back to my fighting weight. I mentioned this to my nutritionist and she said it's because my gut is so messed up, it's just producing too much gas. Again, it makes sense to me.

Re : the acid tests. It does seem very hard to get it done. Maybe try going private for it? The first thing you need to know is whether it's too much or too little. Going to be hard to heal without that information.

[starveycat]

I have been taking omeprazole for years. Then I suffered with inflamed intestines, very painful. Couldn't understand why. Decided to cut down the ppi to one every other day Then I read about cider vinegar capsules. Take a ppi one day and for the next two days I take apple cider vinegar capsule

So far all ok. I take gaviscon advance last thing at night to protect my vocal chords as the stomach acid has burnt them

Good luck hope you manage to sort out your health problems

[Jaby86]

Thank you I didn't realise how many people struggled with this before now! I have read apple cider vinegar helps will give it a try if things don't get any better.

[FarflameX in reply to Jaby86]

It's amazing how many people suffer from it, even people I know (not just people on the internet, I suppose you're bound to find people that way). But even in real life, I keep bumping into people who suffer from it.

I know I've replied before to this thread, but just to say, the ultra-strict diet without PPI's is still working for me. Been almost a month without the PPI's and still the symptoms are improving (though not gone away). I definitely have to stay on the diet of veg and muesli, I can tell I'd get worse if I didn't (the symptoms are there, just much reduced). I think the option is to go PPI's and eat any food you like, or no PPI's and strict diet, at least, that's how it is for me. I feel like I'm healing, very slowly.

I'm not sure ACV actually does much, but it does at least give a basic indicator of whether or not you have low acid (can't confirm that it works, but it seems right for me). I kept taking it anyway for a few weeks and my symptoms were reducing, but I think the diet is the main reason rather than the ACV. I'm on Betaine HCL now, which increases stomach acid and still improving.

I still don't know of a doctor that does accurate acid level readings. I've heard from others that the test isn't available any more. The only test I know you can get is where they monitor for reflux, but since you reflux with low OR high stomach acid, I'm not sure what that would prove.