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Comment by amelius | Hacker News Reader

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 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.

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

Both.

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", fructans, sugar alcohols...). Caprylic acid supplementation really reduced fermentation whenever I made a dietary mistake.

I googled that idea and found the blog of 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.

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.

I don't have notes per se, and I am afraid to say something that can be considered advice. I can answer any question you might have though (assuming it's appropriate for me to do so here, I hope I don't annoy HN users).

I don't think anyone is going to find your comments in this thread annoying, quite the opposite.

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.

More than an allergy I was curious about something to the effect of eosinophilic esophagitis or one of the other eosinophilic gastrointestinal disorders. I present with a similar timeline and symptoms to your description and was querying to see if that was a point of divergence.

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 recommanded or things to watch out ? Do you know natural reliable food sources ?

- can you tell me more about your 3 courses of H. Pylori eradictation ? 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 explaination 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.

Whenever my intestines felt fine, my head felt clear and my nose/sinuses would stop being congested; and vice versa. This phenomenon has been consistent throughout my illness and has led many a doctor to scratch his/her head and/or not take me seriously.

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 (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 stomach and 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. The doctor was a gastroenterologist so he focused on the digestive issues.

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

edit: I forgot to mention something relevant that would relate my experience with the article. A while back I read an article written by an autistic man, in which he mentioned "face tightness" being part of his being autistic (I only made the connection later so I don't know how to find it again). I truly think there is something to that. I felt strained and neurotic whenever my symptoms flared up, and I was quite antisocial in high school, yet mellow on the few days my symptoms cleared up.

edit: further details added. I typed this up a bit quickly (it's late here) so I had omitted some important things.

A lot of your symptoms sound similar to some things that I have been through. I found out that I have celiac disease, after suffering through a lot of physical symptoms which were sometimes paired with mental symptoms such as confusion or mood swings, which are common with celiac. The exact cost seems to be a mixture of things… release of neurotransmitters and immune system chemicals, disrupted gut flora, chronic pain and discomfort, and malnutrition from poor absorption.

Like yours, it’s a long story.

I don't have any statistics, but judging from the number of sites and blogs that have popped up that deal with similar conditions, this seems to be an increasingly common problem. It seems like you could now speak about brain fog and everyone would understand what you meant, and I don't think that was the case 15 years ago.

I've only ever made 2 top-level comments related to this issue on HN and they have surprised me with the amount of attention they generated.

A lot of people are going through desperate times because of conditions like this. It's hard to appreciate how bad it can be just by trying to imagine the symptoms for an instant. It's much harder to imagine what it feels like to experience that for months; years; decades.

I think the conversation about that came up with chronic fatigue. These days it’s used to describe mild hangover-like states, mostly. What people with celiac suffer is more like the confusion that comes with multiple sclerosis. As far as other people’s ‘brain fog’ I think they’re referring to a much more mild condition.

Self described sensitivity to gluten is on the rise. Possibly some gluten intolerance is on the rise, too. However, incidence of -actual- celiac disease as confirmed by biopsy has not changed, but screening and diagnosis have gotten a lot better.

There are actually some very interesting studies looking at blood samples from the 1950s, for instance, that indicate that celiac is much more common than it used to be. See for instance "Increased Prevalence and Mortality in Undiagnosed Celiac Disease" in the journal Gastroenterology, July 2009.

Seems interesting. That was written by a doctor I saw this summer, too.

This is a bit more readable: https://www.the-scientist.com/features/the-celiac-surge-3143...

I recently learned about epigenetics and it's mind blowing.

In a nutshell: the expression of a gene within an individual can change over their lives, and the changes can be inherited. There are multiple mechanisms of alteration and inheritance.

The field is still in very early stages of research, but here are some paraphrases from Wikipedia to hook you:

* Children born during the Dutch famine of 1944–45 were smaller than those born the year before the famine and the effects could last for two generations. They also were at increased risk of glucose intolerance in adulthood.

* Children of women who were abused during pregnancy were significantly more likely than others to have methylated glucocorticoid-receptor genes, which in turn change the response to stress, leading to a higher susceptibility to anxiety

* Male mice that participated in voluntary physical exercise resulted in offspring that had reduced fear memory and anxiety-like behavior in response to stress.

For further reading:

* https://en.wikipedia.org/wiki/Epigenetics

* https://en.wikipedia.org/wiki/Transgenerational_epigenetic_i...

* https://en.wikipedia.org/wiki/Epigenetics_of_anxiety_and_str...

--- Pure conjecture ---

As an engineer, this sounds like coarse short-term evolution; a dimmer switch for various genetic functions which can improve offspring fitness relative to a sudden environmental change, possibly with negative side effects, until the environment stabilizes or genetics can adapt with new functionality.

Only now, our population is mixing over broad geographic areas subject to an unprecedented acceleration of environmental changes, with often no prior genetic training, as cultures shift towards sedentary, inside, less-social lifestyles that have fewer children at greater ages.

An inter-generational epigenetic analysis of celiac, autoimmune, and other "new" diseases could be ground breaking. I'm wondering to what degree they are emergent symptoms of possibly conflicting epigenetic adaptations accumulated over multiple generations. The timing is just so suspicious.

The mouse study of stress tolerance also suggests follow-up studies that may have fascinating political ramifications.

Interesting. As far as heritability, my symptoms closely resemble my mother’s, who is also diagnosed with celiac.

>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.

This is interesting, considering that acidic and salty environments are the ones which naturally harbor beneficial bacteria and yeasts. Quite the paradox you have!

Indeed, but they are also very harsh and my digestive tract sensitive. Sometimes it's just that simple.

Also, vinegar is fermented and thus very high in histamines, on top of being corrosive.

Thanks a lot. I know it takes time to write those long comments.

@theprotocol With your permission, I hope, I copied your comments to my wiki http://www.zeynel.a2hosted.com/index.php?title=Digestive_Hea... I think it will be useful to others as well to read them as a whole. I'll update if there are new relevant comments. Thanks!

Sure, but please note that it 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).

edit:

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.

> everyone is different

Very true. I added your disclaimer.

Not only is people different but what might be helpful for some, in others might create chronic issues.

Killing of species of your gut microbiome (by eliminating foods) should probably not be somethig to take lightly.

True. But I eliminate foods out of necessity. Recently I stopped eating legumes as part of FODMAP diet and I see it makes a difference. I also suspect that we may be eating too much variety. I like for instance Fukuoka's approach to diet http://criticality.org/four-types-diet-masanobu-fukuoka/

How do you react to grains, like rice or Quinoa? Are you in Twitter? How can we get in touch with you?

I can eat small amounts of wheat and any amount of rice without any symptoms. I haven't tried quinoa because I have sufficient grains in my diet now, and don't want to risk reacting to a new food.

Here's a temporary email address: something@radiodale.com

Please email that address and I will give you my real email address there. This is to avoid publishing my email for perpetuity.

I am new to having these symptoms but this is very useful stuff!

I have been taking the peppermint oil tablets from helpforibs.com and they are good for temporary comfort here and there but my gastroenterologist has not recommended the things mentioned here. He has written off probiotics as useless and also downplays dietary adjustments for some reason. It’s really wild. I have found fiber and grains are great for me and eating rice every day is an enormous help.

Do you think a survey of people with similar problems would have helped narrow down effective treatments?

What about instead of sampling randomly selecting individuals to try a treatment?

I'm often overwhelmed by the amount of information about options out there.

I think you'd have to reduce the problem set/space for that to be effective (which is a very similar concept to reducing how you define your state space in AI, if you're familiar with that). If the problem set has too many variables, I think it becomes too challenging to analyze.

My approach is to rely very heavily on heuristics in order to screen potential treatments. I wrote some steps describing how to do that elsewhere in this thread.

Yeah, I guess I really don't have a handle on the complexity.

Your heuristics seem useful. I've been just trying stuff for a month and seeing how they go. Trusting the professionals to guide me in semi-useful directions.

Thanks.

There's a whole group of people who're benefit from eliminating histamins, FODMAPs etc---and even any form of fiber, which probably you already know. Check out carnivores (again if you don't know yet): https://zerocarbzen.com/about-me/... there're facebook groups with many 10ks of members. Another is Dr Ray Peat adherents. They essentially cut out everything but orange juice and milk and meat... :) Curious sort of people. Might give you some ideas.

What works for my "aging" problems (age 40)? Carnivore diet helps to some degree (with weight, testosterone, energy etc). LLLT on the head works really well for me to boost mental acuity, or any form of stimulating light (10k lux lightlamp). It's has been life changing for the past 1.5 years (LLLT device costs $30). https://www.selfhacked.com/blog/my-review-of-lllt/

Best of luck!

It's a great option for people obsessed with pseudoscience I suppose.

low-FODMAPs are University (Monash) science, peer reviewed - if you know of contrary recent studies, please drop some URLs. Mere gainsaying and vituperation is never a contribution to a discussion.

One article that comes to hand: http://well.blogs.nytimes.com/2014/10/06/when-gluten-sensiti...

For a number of people the earth being round was pseudoscience until it wasn't

Yes, going carnivore led to a massive improvement of my health. I am curious about LLLT, sounds a bit like wishful thinking to me but I'd like to try it out. Where would I get a cheap device to play around with and do you use it like stated in the selfhacked article?

I could never stick to carnivore long term, but I like the short term effects. Here's the LLLT device that I use: 1) Aweek® 96 Leds IR Illuminators Light IR Infrared Light LED infrared light CCTV Camera Night-vision Fill Light for CCTV Security Camera, Standard 45°

2) CMVision UL Listed Regulated Power Adapter, 12VDC, 2Amp for Camera, LED Light, IR Illuminator

both from Amazon. 850nm, 96 LED, 2amp 12V adapter.

Don't forget to close the light sensor in the lower left corner when you apply I apply it for 60 sec on upper-front head area every other day. The effects are pretty noticeable for me.

Thanks, will check it out.

Hi! Thank you so much for sharing!

I'm suffering from somehing similar. Did you look into Candida? A lot of the symptoms sound very similar. H. Pylori antibiotics could have killed off good intestinal flora, causing candida overgrowth.

Could you describe what other changes did you make, aside from adding S. Boulardii? Diet, supplements, medications? What helped you the most?

Candida is what a lot of people assume it is, but there's really no way to know for certain what microorganism is imbalanced in your gut, so like many people I started off thinking it was Candida but then moved to more general approach as I learned more (and learned of many, many things other than Candida that could be the problem). It is ultimately very limiting to assume that it's Candida; you'll find most people who think their problem is Candida struggle a lot and the suggested protocols for treating it do not seem to work very well.

You are right to assume that the problem is fungal, since it started after antibiotic therapy, but I find that fermentation of any kind makes me sick - even supposedly anti-candida things made me worse if they were fermented (claimed to provide tons of antifungal probiotics). I have had much better results admitting that I do not know the actual imbalance, and thinking of this as a known unknown.

The supplements that helped me most were caprylic acid (for reducing gut dysbiosis) and S. Boulardii, even though you cannot take both at the same time (the former weakens the latter).

I also benefited greatly from taking nutritional supplements to top off any deficiencies of vitamins and minerals I might have had, but I do not take these things continuously, because supplements usually have specific forms of ingredients that may compete with others - for example, you'll often find Vitamin E as alpha-tocopherol, which is OK for topping off your levels but in the long run, it depletes other forms of Vitamin E such as tocotrienols and other tocopherols.

See my other comments for more details, I wrote quite a bit.

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