Following on from decades of digestive issues I discovered in 2023, after paying for a fully comprehensive stool analysis test that I had gut dysbiosis. I mentioned this to my gastroenterologist who gave me a SIBO breath test, it came back positive for hydrogen SIBO. Gastro was rather nonchalant about it all stating that the breath tests are quite unreliable and I would probably be suffering from a complicated or serious health condition if I genuinely had SIBO. However, she did prescribe me the antibiotic to treat it (Rifaxmin) but this made me feel dreadful and I still have the gut issues. From my research it does seems as though many sufferers end up taking several rounds of this stuff and it's very expensive. I really don't want another round of it tbh.
My dietitian basically said the same as the gastro, stating there have been various studies and the tests are very hit and miss. She believes the people pushing the antibiotics are making money out of it (there are several US doctors who are supposed experts in SIBO and they all push the antibiotic which here is £200 for a 2 week supply). However, I have joined several SIBO support groups and the sufferers on here are almost evangelical about blasting this bacteria with anything from the antibiotics, antimicrobials (berberine/orggano oil), very expensive motility agents and biofilm disruptors to break down the supposed protective film that the bacteria have on them. It's all very confusing and so many of these sufferers have various ideas on how to kill the bacteria yet many are still struggling with their gut issues.
The UK support group is very strict on how to kill off this bacteria, many of them have done this with the support of very expensive private functional practitioners costing £1000 or more. They firstly need to find their nutritional deficiencies and correct which they say is often a B12 issue. They then spend months self injecting which they purchase from the internet, then finding their route cause of the SIBO and fix that, I still have no idea what mine is (was recently diagnosed with endometriosis so could be that?). All in all it appears to be a very expensive route to go via a functional practitioner with no guarantees of success and even if it were, I simply don't have the funds for this. So it's a case of either settling for feeling crap with horrible digestive issues for the rest of my life or trying to tackle this on my own.
Has anyone on here suffered with SIBO and managed to kill it off or at least reduce it without having to suffer horrible die off symptoms or without shelling out a small fortune? I would rather tackle this in a more gentle way even if it takes longer.
Here are my symptoms if anyone can relate:
Needing the loo as soon as I wake - can me anything from loose to constipation (anything from No1 to No 5 on the Bristol Stool Chart) but I always go everyday (often at least 3 times a day and can suddenly need to poop at anytime which is very inconvenient and causes me a lot of anxiety). I have a strong gastrocolic reflex so often need to go after eating which makes socialising an unpleasant experince.
Excessive gurglings and rumblings from my stomach through to bowel (bowel always seems so angry)
Nausea, burping, acid indigestion and a general unsettled feeling within my stomach
Wake with a flat stomach and end up looking heavily pregnant come 3-4pm. Very painful to eat dinner when I am this bloated. The bloating in general is very painful and I then spend the evening farting like a horse (not great for a social life which I no longer have as a result).
Weirdly, there are a few days a month when I have minimal symptoms but no idea why as I keep a food and symptom diary and basically eat the same kind of foods every day (avoiding trigger foods etc), so no idea why I have 3-4 good days a month. Maybe hormonal as I am in perimenopause which incidentally has seen my 30 year journey with gut issues become so much worse.