I need a strategy to rid myself of this chronic indigestion

[Dreamsfallapartattheseams]

I have suffered with gut issues for decades. Lots and lots of tests (colonscopies, gastroscope, pill camera endoscopy, ultrasound scans and a bile acid scan). A diagnosis of IBS and functional dyspepsia is all the gastro can come up with.

Over the last few years I have been struggling with a lot of upper gut issues which have been getting worse over the last year or so.
Nausea, acid, burping, weird silent burps which travel up and stay in my throat, sore tongue and mouth, severe bloating, gurgling and a generalised unsettled feeling in my upper gut/stomach. It can occur on/off all day and is worse mid cycle and before my period, I am pretty certain perimenopause is the fuel on the fire as it's been much worse since being in peri. I am 51 and still have a cycle. I also have endometriosis and adenomyosis and not sure if they contribute to the issue?

I very much have to watch what I eat and stay away from anything which is acid forming or causing. I only drink water. I don't eat wheat, eggs or dairy. I exercise and practise mindfulness every day.

I can't take ppi's/h2 blockers as they make my lower gut issues worse. Gaviscon helps for about 10 mins then it's all back again. Even on a "good" day I have this weird unsettled acidic feeling at the base of my throat (I feel this as I type).

Any advice? I am at a loss how to ease this and enjoy my food again.

Have you ruled out SIBO ?

Theres also a test that measures acid levels in the oesophagus which would determine if you actually have GERD or not. Have you had this ? The NHS may not always offer it.

If you have GERD surgery is an option. If you don’t a low dose of antidepressant eg amitrityline can also be helpful if it’s a functional/oversensitivity issue.

My gastroenterologist hasn't offered anymore tests. She said I'd need to be suffering significant health issues to have developed sibo? Sadly I can't afford the test or antibiotics privately (£200 for a two week course of rifaximin) as I've recently lost my job

I did try amitriptyline but it made me feel like a zombie and when my GP discovered my mum has Alzheimer's she advised I take myself off it as it carries a dementia risk.

I am considering trying fluoxetine, my GP prescribed it but I haven't yet taken it as the amitriptyline experience put me off.

Fellow sufferer here. I think all the gurgling, bloating and nausea suggests too much acid, not just acid in the wrong place. (According to an old GP of mine). So surgery for GERD is not the answer. Really, in my experience the only answer is PPIs or H2 blockers (or in my case both!) and deal with the consequences on your lower gut as best you can.

A really strong probiotic like VSL3 might help your lower gut, but is too expensive while you're not working. It tends to speed things up which might not be what you need anyway.

I avoid foods high in fat and have absolutely no refined sugar. At one time I had to avoid all dairy as although it eased my stomach it gave me lower abdominal pain. That's gone now. It's a good idea to periodically try reintroducing foods so as not too have too restricted a diet. Healthy foods like fibrous veggies and beans/lentils can be very unhelpful. A Low FODMAP diet has helped some of my friends, including one total cure of IBS. You don't have to do it forever.

I do already follow the low fodmap diet with the addition of avoiding other foods which set me off such as dairy, wheat, eggs, sugar. I am also triggered by fat, acidic foods (tomatoes etc), mint, artificial sweeteners......

I've worked with hospital dietitians and also a private nutritionist and they all seem to have differing opinions. Some say it's low acid, others say high acid.

PPi's give me awful diarrhoea to the point that I couldn't function and treating it with imodium left me with griping stomach pains.

VSL#3 was suggested by my dietitian but as you say, it is expensive, as is Symprove. I may try some cheaper versions and see if I get any benefit from those. My dietitian did also suggest Alflorex which is a bit less expensive.

It is so frustrating having both upper and lower gut issues. If I treat one it upsets the other and vice versa.

I had SIBO and didn’t even know it so I’m not sure where she’s got that from.

You say you're wheat free, have you ever tried going completely gluten free so no oats, no barley, no Rye?

Have you tried taking digestive enzymes with each meal?

Eg: uk.iherb.com/pr/enzymedica-digest-complete-enzyme-formula-30-capsules/10791

I bang my head against the wall every time I converse with my gastro. She even referred me on to the neuro-gastro dept of the UCLH, they too are telling me not to concentrate on SIBO. They say there isn't enough evidence on the testing/ treatment etc. My neuro-gastroenterologist tells me the tests are not sophisticated enough yet to make a fully accurate diagnosis!

How did you eradicate your SIBO? Did you take rifaximin?

Yes, I'm am fully gluten free. I only consume naturally gluten free products as I find most gf foods have high fodmap or triggering ingredients.

I was taking one from a company called Just for Tummies, I didn't find it helped much but maybe I need to try a different brand. I'll check that one out, thanks.

I did.

Unfortunately it wasn’t the source of my issues - or at least not the main one - I was eventually diagnosed with something else in the end.

That one in particular, Enzymedica Digest Complete, was recommended to me by a friend who had compared lots of them and that came out best in terms of broad range and effective dose of the different enzymes, @Dreamsfallapartattheseams. There are lots with similar names so it can get confusing.

You've been tested for H Pylori?

I have, during my gastroscope samples were taken for h pylori and coeliac disease.

Chewing gum helped me. Basic but maybe worth a try?

You can’t overdose gaviscon so for now I would be swigging it like water to keep it at bay.

Have you tried different types of PPIs? I didn't get on with omeprazole & lansoprazole as they made my stomach issues worse, but esomeprazole works so much better.

I may just try that.

If it is SIBO a diagnosis would provide clarity and might be able to be used to get the NHS to prescribe.

I haven't used this company, but they offer a free 15 min chat to discuss if the test is appropriate for you and talk about affordability:

www.ibsclinics.co.uk/sibo-test-uk-cost/

Place a spoon of apple cider vinegar in half a glass of water and have first thing on an empty stomach.

Works miracle's

I have tried several types but they all give my awful lower gut issues.

Thank you. Willing to try anything at this point.