The user expresses frustration with the lack of reliable testing and diagnosis for IBS root causes. They suggest a need for better tools to track the effectiveness of different interventions (supplements, medications, etc.) over time, since individual responses vary widely.
Hey everyone, I’m starting to notice that this sub is filled with people claiming that they are cured thanks to X supplement or Y habit or Z diet. Lots of us have been stuck there for years, and it feels very depressing to read things like “You just need to eat yogurt and avoid sugars”, “just take artichoke because motility is the key”, “just try carnivore”, etc… I’ve been here for a long time, I’m still not cured, tried countless things, most of them did not work. I made some progress but mainly did a lot of research on this disease. - SIBO Breath tests are unreliable. Up to 1/3 healthy patients will come up with a positive lactulose test. Think about it this way: 1 out of 3 people on this planet will test positive to SIBO. - SIBO and IBS are both umbrella terms. It’s not like “I have the flu, I should just get a course of flu medication and this will go away”. There are different types of SIBO (H2, CH4, H2S), and these types have sub-types depending on which bacteria strain is present in the small intestine (e.g. for H2S, could be bilophila, desulfovibrio, etc…) - Current treatments (antibiotics/herbals) only work as expected if your root cause is fixed. SIBO is not something you catch like a regular infection. It arises from another problem in your body: your root cause. This root cause can be complex to identify and is sometimes itself coming from multiple upstream issues. I’ll discuss this later. - Antibiotics/herbals can make your SIBO even worse if your root cause is not fixed. What they do is that they wipe out part of your microbiome (both small and large intestine). Even with SIBO, your microbiome can sometimes maintain a sub-optimal level of symbiosis. Wiping out everything can cause your symptoms to worsen, or new symptoms to appear. - Root cause research can be extremely difficult and time-consuming. There are so many things that can cause unexplained GI symptoms: - Dysbiosis: post antibiotics, post infectious - Fungal overgrowth - Motility issues - Bile flow/ Bile acid issues - Stomach acid issues - Immune system issues - Food intolerances - Pelvic floor dysfunction - Parasites - Vitamin/Mineral deficiencies: B1/B9/B12/Zinc/Copper/D/Molybdenum… - Low grade inflammation - Mold exposure - Nerve issues/Autonomic system dysfunction - etc… The biggest problem is that these causes are interrelated. Some of them causing the others later on. And you might need to treat them all at once if you want to get better. Think of your body as a car. You have a flat tyre, but no one is able to tell it. So you continue to drive with it for years, until it gets really bad. At this point your suspension and chassis are also broken. If you change the tyre now without fixing the rest, you won’t feel better. You might need to fix everything, even if the initial root cause was a flat tyre. SIBO/IBS is the same. You get more and more symptoms, and once you’re here looking for solutions, you’re hoping to find a single treatment that will fix everything. It could be the case for some people. But for most of us, it isn’t. - All the root causes that I listed have one thing in common: They are very hard to diagnose. Almost impossible to test, and even when you can, they often come back negative regardless of if you have the condition. This is precisely the issue with the fact that 1/3 of the population test positive for SIBO. All these people, suffering from GI symptoms, are desperately looking for answers as everything else came back negative. So we do our research, and we all end up here, thinking we are all the same and we all have the same issue. This is likely false. We do have the same positive test. We are all in this 1/3 of the population. But what is causing my problems might be very different from what is causing yours. - We are alone in this. There’s very little research on this topic. Most doctors don’t have the capacity to understand your issues. They haven’t been trained for it. Don’t be surprised if they are not helping. They just can’t. You, and only you, are your own advocate and saviour. Believe in yourself, listen to your body, and I hope we’ll get better soon.