Diagnosis- ish

[Awwy]

Hi everyone,

Hope you are well. I have seen a gastroenterologist for issues with swallowing.

He has diagnosed the following: intermittent dysphagia. Slight incordination of motility via barium swallow. I also had a high resolution manometry. They said reassuring noromotensive lower oesopageal sphincter and body peristalsis. Impendance test showed weak acid reflux indicating visceral hypersensitivity.

Recommended I carry on taking omperazole to which I had side effects. Then said try another lansoprazole pantoprazole or famotidine.

Even though my food comes back up after eating... they saying its mild and im just more sensitive to the feeling. I think he has discharged me now but I have a camera booked in few weeks to take a look.

What medicine is best to take? What are my next steps? I know they have done quite a bit.

My other conditions: I have Lupus, Raynauds, Chronic fatigue, hashimoto's disease, stage 4 widespread endometriosis. Currently being investigated for fibromyalgia. Im on a lot of medication.

My weight also came up. Those of you who have read my previous posts know that this has been an ongoing struggle.

Any advice gratefully received.

Thanks

[westcountry]

I have acid issues...gastritis, heartburn, oesophigitis and fibromyalgia. I have tried Omeprazole, Lanzoprazole but both gave me horrid side effects. I tried Pantoprazole and managed to take it for over a month which helped a bit. I then started with side effects so has to stop Apparently Famotodine works in a different way to PPIs by just reducing acid. I haven't plucked up courage yet to try it yet as worried about side effects again. My advice is to try different ones as everybody is different with side effects. I just rely on Gaviscon Advance now and have been trying slippery elm recently.

[Awwy in reply to westcountry]

Thank you for your reply. Side affects are where are worrying me. I just feel like its a pill for something and then something else. I might try Gaviscon again and see how that goes. 💛

[FarflameX]

I can only give you my experience, although it sounds a lot different to yours. I was just experiencing chest pains at night and some breathing difficulties, both of which were put down to acid reflux. In the end, I think this was probably accurate, although I'm still a bit suspicious that these might have been symptoms of something else. But I had my heart checked over and over and it seemed fine, so it may have been 'just' acid reflux.

I was prescribed Lanzoprazole, which did pretty much nothing for me. If anything, I would say that all antacids just kept me stuck in the place I was in. It was probably too little or too weak stomach acid, due to the endless antacids that I'd taken before this hit me. So I went with the idea of increasing / strengthening my acid rather than decreasing / weakening and I got better quite quickly. I still have to maintain a strict 'bland' diet otherwise I get heartburn, but I'm healing now. I still take Betaine HCL which increases stomach acid rather than reducing it and it really seems to help. My experience of antacids is that they give short-term relief but I never actually got any better long-term.

It can be very different for everybody though but that's just my thoughts, hopefully it may help a bit.

[Awwy in reply to FarflameX]

Thank you for you reply. I did ask him if I had high or low stomach acid and he said it doesn't matter. This is what makes me suspicious of just blindly taking medication. I think I have low stomach acid in which case those medicines to me will probably make it worse. At its worse I drink carbonated water and that eases some of my symptoms. 😊

[FarflameX in reply to Awwy]

Yes, we're on the same page here. I'm sure they're doing their best, but I think there's a big blind-spot here.

In my case I was taking antacids for a year or two before it started. This makes me suspicious that I'd damaged my own body's ability to correctly regulate my stomach acid. Looking further into it, it's possible that it's done damage to my gut biome or elsewhere, since constantly reducing the acid makes it harder to digest food. It's hard to know without any true diagnosis, but I was working on that idea. I tried PPI's and Gaviscon but nothing changed. Gaviscon did at least relieve the symptoms temporarily but then they'd come back during the night with a vengeance.

A doctors appointment now takes over a month which makes it even worse. If it were me now, I'd go to the doctor and insist that they do a stomach acid test. I asked but he said it wasn't worth it. I explained about the antacids but he dismissed it. If you're in the UK, I think you're entitled to treatment if you insist. At least if you get a diagnosis, you can go in the right direction.

I started trying apple cider vinegar and started to feel a bit better quite quickly. The downside is that it can burn as it goes down and the oesophagus is probably already inflamed, so that might make things worse. It seemed good for a few days though and pushed me in this direction.

I cut out all antacids and started taking Betaine HCL (which is basically the ingredients for more stomach acid in a capsule). I no longer have any serious symptoms and can sleep well now. I still have minor issues and still have to keep my diet sensible. No more chocolate for me but that's a good thing now I've lost the addiction to it.

I'd also try to avoid drinking with meals, including water. You're just diluting your stomach and making it hard to break down the meals. I used to drink at least a cup of water with every meal since I was having difficulty swallowing. Just chew more until it's easier to swallow (we should all be doing this anyway, I've heard up to 30 chews per mouthful) and skip the water. That really helped.

[Awwy in reply to FarflameX]

Sleeping is hard I have so many pillows to pop me up at night. Good tip on the water. I sip throughout the day now can't drink a glass or have tea etc... without it feeling like it's coming back up. Does chocolate flare it? 😒😬. Agree with the more chewing. Thank you so much for sharing that has really helped. I'll look into Betaine HCL.

[FarflameX in reply to Awwy]

Yes, chocolate or anything with breadcrumbs really flares me up. I just avoid them now and haven't had a flare up at all for ages. That's the main thing for me, just stop feeding the problem and let myself heal.

I found that propping myself up at night also made it worse. Same with sleeping on the left, I was just getting pains down my left side since I really needed to turn over. Now I just sleep normally and I sleep much better.

If you're considering the 'low acid' approach, you can start by just getting off all antacids and see how you go. If you feel even a little bit better, it's possible that the antacids are feeding the problem. From there, move onto HCL etc.

When I came off the 'ozole's, I started getting bad back ache. I read up and found others with the same problem so put it down to the withdrawal. It's gone away now so that was probably accurate.

[Awwy in reply to FarflameX]

I took anti acids omeprazole for a while, but then came off them because I felt sick and was very bloated. Currently not taking anything. I don't have a burning sensation. Just a pressure and feel like whatever I have eaten is sitting in my chest or coming back up.

[FarflameX in reply to Awwy]

Yeah that does sound a bit like too low acid. Again, I'm not a doctor so this is just comparing notes. But when I was on antacids, I was also very bloated. The theory being (and I believe this) that your acid is so low and/or weak that it's just not digesting the food. Rather than turning your food into paste in <an hour as it's supposed to, it's instead struggling to break it down so it's just sitting there for hour after hour. Betaine HCL might help with that since it's a boost of 'acid'.

Interesting fact I found out is that if your stomach is very low on acid, it'll start to churn deliberately in order to splash the food around in whatever acid you have. Normally, you want a stomach at least half full of acid so that the food can plop in and totally submerge, allowing it to dissolve very quickly. But it's just a puddle, the stomach will toss it about, trying to get it soaked with as much as possible.

Take all of this with a pinch of salt. I can't confirm anything. Mind you, I'm not sure the doctors can either. I'd try the Betaine, if it helps with the bloating then that might set you on the right path.

Give it a few months and it'll all slowly get better.

[Awwy in reply to FarflameX]

Thank you very much. That would explain the growling noises .my stomach makes! I have learnt to listen to my body and do what is right by it. So I think ill go with the low acid thing and work it out from there. Nice to have someone else understand. X

[FarflameX in reply to Awwy]

Yeah but just to reiterate, a lot of this is theory and it differs very much from the standard medical approach. Personally, I think they've got this wrong and too little/weak acid is just as common, or even more common than too much and has similar symptoms. It's just that it FEELS like you've got too much since you get the burning.

If you're getting churning and rumbling, it could well be this. When I was on lanzoprozole, I got a lot of bloating. When I switched to Betaine and ACL the bloating went away fast. You really need to dissolve that food FAST.

Honestly, I wasn't really aware of what the stomach did, I used to think that it basically did everything but it's only a small part of the process. It's really just to prepare the food for the real processing lower down. You need strong, strong acid for that (PH 1.5 or so).

If your food isn't digesting in the stomach very well, you can end up with gas building up causing pressure in the stomach that eventually just blurts up into the throat.

Even basic salt (for the chlorine in the hydrochloric acid) and vinegar (for the acid) can help.

But again, be careful. Try stuff slowly, see how your body responds. I responded so well to the ACV that I started swigging the stuff and it helped a lot. Problem is, it messes with your teeth so I switched to Betaine.

[Awwy in reply to FarflameX]

Yes totally understand you not an expert and its theory. I just disagree 2ith the doctors.

[FarflameX in reply to Awwy]

Same here. It probably didn't help that I spoke to about 6 doctors and they all told me a different thing

[Hidden in reply to Awwy]

I read in one of the advice things for silent reflux that chocolate and peppermint relax the sphincter at the top of the stomach so make it easier for reflux to happen, not that they are acidic.

[Nextoneplease]

This is very interesting, thank you all 😊 My daughter is on shedloads of antacids of various sorts (omeprazole, famotidine, Gaviscon…) and if she’s not much better soon, I think maybe we need to talk about alternatives. In fact I’m pretty sure we do, long term.

[FarflameX in reply to Nextoneplease]

You could try a nutritionist. They very much take the 'too little acid' approach, so the opposite of what the doctor will say. It's very frustrating without a real diagnosis. The ACV test is pretty good though, take a swig and if she doesn't burn, she's 'probably' low on acid.

[Nextoneplease in reply to FarflameX]

Ah, that’s interesting! She has tried cider apple vinegar, and no, surprisingly she didn’t burn! So as you say, that increases the possibility that she ‘ may’ have low acid. Who knew!! Will definitely bear this in mind but don’t want to encourage her to keep changing both diet and medication before each has been given a fair trial.

Thanks again, your support is very helpful 😊

[Hidden]

I have recently had a barium swallow, and another test which involved swallowing barium mixed with different thicknesses of food. I have a really helpful Speech and Language Therapist who rang me after the tests. They said I had a weak swallowing reflex, which gave problems with residue of food near the epiglottis which gets into my airway and causes coughing and choking. The SALT is going to give me swallowing exercises to strengthen the swallow.I also have a problem with my vocal chords one of which is not working properly.

I take pantoprazole which I have done for some years, without problems. I tried doing without, but problems got worse again. The ENT doctor suggested taking gaviscon after each meal which works best on throat reflux problems. Unfortunately doing that has made me quite constipated, but may not be a problem with others.

Gaviscon does seem to work well in terms of lying on the top of food and preventing reflux rather than reducing the acid.

Didn't quite understand all the medical stuff, but it's worth trying pantoprazole, and gaviscon.

[Awwy in reply to Hidden]

Thank you so much for you reply. I think I'd stick to gaviscon and see how I go from there.