Digestive Health

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These are comments from Hacker News discussion on the article Gut bacteria may offer a treatment for autism. The user theprotocol explains how he gained back his digestive health. I edited out other comments hot related to theprotocol's comments. This way it would be easier for others to read and eventually add their experiences as well.


theprotocol (adds this disclaimer):

Please note that this is not to be construed as advice, merely an example of what might work for someone, and that everyone is different (for instance, one of my posts mentions that a subset of people do extremely well on a diet opposite mine - high starch).
I've also not written anything about methodology, so I hope my writings have not given the impression that one can play fast and loose with supplements. I actually follow a safety-first approach, and I do this only after a doctor reaches a dead-end.
General approach for evaluating supplements:
1- Find out about something that sounds promising, either by accident, or googling ideas and stumbling upon something that claims to improve your condition in some way.
2- Skim reputable sites (that cite research) listing the potential pros and cons of the supplement in question. Stop here if there is an unacceptable level of risk.
3- Skim any research about the supplement vs. your condition.
4- Read Amazon/iherb/other customer reviews for formulations of the supplement. Do not get excited. Most of these reviews are fake. What you are doing here is scoping out the ideal claimed outcome as a screening tool. If the ideal outcome is not worthwhile, stop here.
5- Dig into the research yourself. Confirm the level of risk. Check interactions. Determine whether there is a chance of the supplement working.
6- Purchase and test product. Remain objective. The baseline expectation is that nothing will work. Don't be emotional about that. I love having experience with products regardless of whether they work for me or not. I find it very interesting either way.



Without S. Boulardii,[1] I am a neurotic mess who can't digest anything at all nor think straight after eating anything, so I'm inclined to believe this hypothesis.


This is an extremely articulate and beautiful perspective. How did you acquire it?


In this case it's based on a heuristic. I can't at all model human will so it seems reasonable to start with it as infinite (since it's so vast and appears virtually limitless, the very reason I can't model it in the first place) and model in the constraints.


I am very interested in learning more. I will Google etc. of course, but if there are links, blog posts or bits of info you would be willing to share I would be most grateful. Thanks.


How did you find out?


I figured out that my problems were related to intestinal microflora because they became ten times worse after undergoing 3 courses of H. Pylori eradication therapy[2] in the span of only a few months, and I never improved for years afterwards. That's the short version; in reality, I suffered for a decade and a half before I caught on that I could do something about it, and it took about 5 years after that to get any kind of positive result (which gave me the confidence to pursue it more seriously).
S. Boulardii is fairly widely known as having a pretty broad range of positive effects, so trying it out was a no-brainer. I have tried many, many things over the years and have improved greatly.
On a related note, it is common to assume that confirmation bias or the placebo effect would distort my judgment, but it turns out I am objective to a fault, as any objectively measurable intervention that I thought worked was later tested experimentally and confirmed my results.
There is actually nothing wrong with taking a guerrilla approach to health if doctors can't help you, as long as you don't fall for the "alternative for alternative's sake" fallacy, and are willing to bear the costs of iterating through the most promising interventions and not being disappointed when most of them fail.


I'm very interested in your experience.
Few questions:
- what positive effects did you get taking S. Boulardii ?
- did you try reuteri ? If no why ? If yes what happened ?
- what forms did you take the supplement in ? What form do you prefer and why ? Any brand recommended or things to watch out ? Do you know natural reliable food sources ?
- can you tell me more about your 3 courses of H. Pylori eradication ? Why ? How ? What are the results and costs ?
- did you notice what in your life may cause you to loose a proper gut content ?
And if you ever have the time, can you give a long explanation text about your overall experience ? That's the kind of information I'm mining hard for. I do understand it takes time and also that you are not a doctor and cannot be considered a representative sample. But it's very interesting and hard to find information.


I didn't expect this level of attention at all. I hope it is appropriate for me to respond.
- what positive effects did you get taking S. Boulardii ?
Intestinal "well-being," feeling I can almost forget about my intestines, whereas normally my abdomen always hurts very badly, to the point my entire body is straining in reaction to it. This is only in combination with the other measures I took; S. Boulardii alone is insufficient.
I tried doubling the dose after reading about that on the net (some people take 25m+ CFUs), but it gave me dryness/constipation and resulted in diverticulitis so I gave that up.
- did you try reuteri ? If no why ? If yes what happened ?
Only as part of larger probiotic formulations. I don't tolerate most and I'm not sure why. It may be that some strains produce histamines or include FOS[3] (when I iterated through probiotic products, I was not aware of FOS - please see my other reply below where I discuss FOS). So I don't have any experience with it.
- what forms did you take the supplement in ? What form do you prefer and why ? Any brand recommanded or things to watch out ? Do you know natural reliable food sources ?
I take KAL S. Boulardii (ordered from iherb). I use veg. capsules because of a bias I have: I had bad side effects to a few liquid probiotic formulations I tried early on, so I ended up avoiding them as a general rule (which might be invalid but I have no further need to re-test it).
- can you tell me more about your 3 courses of H. Pylori eradictation ? Why ? How ? What are the results and costs ?
The reason I got the treatment in the first place was chronic inflammation in the intestines. I also had severe chronic sinus inflammation (enlarged turbinates specifically) that never abated, and a very bad response to histamines (redness, itching). I had asthma-like throat constriction; a doctor once told me "of course your heart rate's up, you're almost choking!" after I went in because I felt out of breath. I had a general drunken feeling, and would even get giddy at times. I have considered the possibility of auto-brewery syndrome, but there's no way to tell now.
After the eradication therapy, that all got much worse and I developed noticeable food intolerances. I think I was already sensitive to those foods, but not enough that I'd notice at the time. I specifically could no longer tolerate dairy and sugar at all, and I had to greatly limit harsh foods (acidic stuff like vinegar, or very salty foods) or else I'd get gastritis extremely quickly (confirmed on endoscopy). My scalp started to itch and lots of hair fell out in my crown area. I am better with dairy nowadays but still can't have sugar, and vinegar just destroys me (I guess because it is corrosive AND high in histamines). I also can barely eat acidic foods and have to avoid most of them.
- did you notice what in your life may cause you to loose a proper gut content ?
I had always felt great until the age of 11, then it hit me and I started to have "attacks" which I didn't understand at the time, and doctors couldn't figure them out at all. I was given a bunch of things like nasal steroids for the sinus issues, and some symptomatic treatment for the stomach.
I felt so terrible though, literally like I was dying. I imagine waterboarding feels like that, because I just felt like I was unable to breathe adequately and even though it wasn't visible, I felt like I was making a contorted face all the time because of the feeling of straining. I kept asking for help but after doctors couldn't find anything, my parents began punishing me for what they thought was malingering (long story there - but they are forgiven and we are on good terms now).
I have some theories about what caused it but nothing concrete. I moved country (continent too, in fact) just 2 years prior and hygiene was far worse. I went through several bouts of gastroenteritis. I also got a salmonella immunization (capsule) and the doctor instructed my mom to open it up and release the powder in some milk, to make it easier for a child of my age to swallow it. I got extremely sick with some kind flu-like illness + gastroenteritis after that, even though my siblings who took the same immunization did not get sick.
Please see the reply I made below for some more details if you're interested


Did you adjust your diet, or are you taking supplements?


Regarding diet, I started observing the effects of everything I ate and adjusting accordingly, somewhat like an elimination diet. I was actually really clueless at first and had numerous deficiencies as a tradeoff for some of the symptoms disappearing (which was great but not sustainable). Over the span of years, this has improved and today I have no deficiencies and only relatively mild symptoms remain.
The biggest breakthrough was limiting fermentation, by taking the FODMAP IBS diet to its natural conclusion, and eliminating everything that would ferment (and thus increase intestinal microorganisms, which for me were imbalanced). What prompted me to do this was trying 2 similar probiotic formulations, only one of which had FOS. The one with FOS caused a huge flare up. So I greatly reduced fermentable things ("resistant starches," "soluble fiber," "FOS," "FODMAPs",[4] fructans, sugar alcohols...). Caprylic acid supplementation really reduced fermentation whenever I made a dietary mistake.
I googled that idea and found the blog of <ref>Dr. Norm Robillard which advocates for a similar low-fermentation diet. Interestingly, the people who commented on his site seemed to divide into 2 camps: low-fermentation people vs. those who did well on the opposite diet (high starch / fermented foods).
Adding S. Boulardii then reduced my symptoms further (brain fog, chronic intestinal inflammation) and I feel pretty decent now.
I cannot yet figure out how to make it so my intestinal microflora is balanced enough that eating fermented and/or fermentable foods wouldn't destroy me. I'm still working on that in my spare time.


Not sure which reply chain to jump into here, but during endoscopic evaluation have you ever had biopsies taken to check eosinophil counts in your stomach or esophageal tissue?


I've had several gastroscopies and always had biopsies taken. Eosinophils were within the normal range, so whatever I have is not a true allergy.


Brain fog, intestinal inflammation. Sounds so very familiar.
Do you have research notes, on methodology and things tried? I'm now very curious for myself.