Auto-brewery syndrome in a 50-year-old woman | Hacker News Reader

Auto-brewery syndrome in a 50-year-old woman

cmaj.ca

146 pointsgeox150 comments

This poor woman. I feel like auto-brewery syndrome is well known enough in pop culture that I am somewhat stunned it went so long before anyone considered the possibility.

It's known in pop culture because it's so strange to actually see in a doctor's office.

It took me several years to get a SIBO diagnosis even though the "breath test" fir it is cheap and easy. Similar symptoms and treatment to autobrewery syndrome, and a lot of the feedback I got from doctors prior to diagnosis was that I was either a hypochondriac or "just more sensitive to pain".

It's ridiculous what doctors will put people through instead of doing a basic test that's cheap and easy to administer and (in the USA) should be covered by health insurance.

I know someone who went through a similar experience with H. pylori.

Tests are not 100% accurate, so running a test without a good reason can lead to a lot of unnecessary medical intervention. A false positive can lead to thousands of dollars of expense and not getting better.

In my particular case, I had numerous other more expensive and invasive tests before my gastro finally decided to even offer the breath test. The treatment is a course of antibiotics for a week.

This reasoning only makes sense in the context of a dysfunctional system. "We can't gather information because we will react in stupid ways".

Surely the correct response for noninvasive tests is to run the test, and raise the threshold for intervention?

Or if it's cheap, run the test twice. And you're presumably going to have other symptoms that corroborate the results. Maybe the symptoms of X are ambiguous alone, but what are the odds you have a positive test for X and matching symptoms but not X itself? Not zero, but lower.

Running most tests twice won't necessarily give you any useful additional information. Tests generally don't give binary results. Like a hydrogen breath test will give a value within a range, but a high value isn't necessarily definitive for diagnosis of SIBO. It's just one piece of evidence.

https://my.clevelandclinic.org/health/diagnostics/12360-hydr...

There are well-established frameworks in statistics and decision theory for handling this kind of situation, some of them in continuous successful use for over a century. It's not exactly a solved problem, but we aren't fumbling around in the dark either.

Those well-established frameworks in statistics and decision theory are unfortunately mostly irrelevant in complex medical cases like this. There is no reliable source of truth to index against. We often don't have a reliable scientific basis for taking the result of a particular quantitative test and calculating the probability that a patient has (or doesn't have) a particular condition. Estimates of selectivity and sensitivity for particular tests are often wildly off. And when there are multiple tests involved we often don't know the correlation coefficients. Even the definitions of particular conditions are often somewhat arbitrary and not particularly biologically relevant.

Software developers often have this unrealistic fantasy about how things ought to work in medicine and biology. They reality is far messier.

Fortunately I'm not a software developer!

Also yes, you're right about having good estimates for medical tests.

Mainly I take issue with your claim that "Running most tests twice won't necessarily give you any useful additional information." As long as it is directionally associated with the thing you're trying to test for (i.e. it has any medical value at all), then running it twice absolutely should give you additional information. "Not necessarily" I guess is true, but again, probability gives us the tools to reason about situations like this even if we can't estimate population parameters reliably.

It took me nearly two decades of problems before I got a SIBO diagnosis, via breath testing. But now I'm not sure how much stock to put in such tests, given the very recent paper https://onlinelibrary.wiley.com/doi/10.1111/nmo.14817 which suggests positive breath test results may usually be an artifact of decreased transit time more than any small bowel overgrowth.

I definitely sympathize with you on doctors generally being unhelpful and uncurious.

I was told that I was a hypochondriac by a few doctors so I went away and studied what hypochondriacs typically complained about.

I found that there isn't as much variety in complaints as you would expect if people were independently making things up to complain about and there isn't as much consistency as you would expect if the complaints were due to social contagion.

There does seem to be spikes around general awareness like when a popular TikTok or famous person is diagnosed with a thing, but it's possible to use the less well known bucket of comorbidities to figure out what percentage of those are examples of social contagion, what percentage do present with these actual conditions, and what percentages are true hypochondriacs. The first group lack the depth of comorbidities that the second group have, and the true hypochondriacs tend to claim they have absolutely everything no matter how preposterous.

From what I found the large majority of those considered hypochondriacs do exhibit the conditions that they believe they have. The social contagion and true hypochondriacs appear to cooccur with mental disorders and are only a small percentage of the cases. I really wish medicine made an effort to distinguish between these three cases to extract the apparent hypochondriacs from the true hypochondriacs and treat them separately.

I think a large number of those with undiagnosed conditions actually exhibit conditions from the hEDS bucket of comorbidities which is especially vast and varied. See https://ohtwist.com/about-eds/comorbidities for an incomplete list. This bucket does include SIBO. So if you have been told by a doctor that you're a hypochondriac and you exhibit SIBO these do increase the probability of you having hEDS. There is an assumption that hEDS requires the person to exhibit excess flexibility and while this does appear to be generally true it doesn't appear to be a necessary condition. A person with hEDS, especially if they are male, may not exhibit any excess flexibility but will exhibit hEDS comorbidities at the exactly same rate as someone who has been officially diagnosed with hEDS which would be rather unlikely if they didn't have also have hEDS. Of course if a person exhibits excess flexibility that would increase their likelihood of having hEDS. What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.

Thank you for the well considered response, but my symptoms include a tremendous amount of flatulence and diarrhea, a specific smell that other people can detect, etc. that cannot be explained by hypochondria.

I 100% believe that you are not a hypochondriac and did expect you to have corroborating evidence of such. I was writing in criticism your doctor’s initial assessment and of doctors in general.

I was also throwing information over a wall on the off chance that the information would be useful to a third party that may not yet know about hEDS and hEDS related comorbidities.

> I think a large number of those with undiagnosed conditions actually exhibit conditions from the hEDS bucket of comorbidities which is especially vast and varied. See https://ohtwist.com/about-eds/comorbidities for an incomplete list. This bucket does include SIBO. So if you have been told by a doctor that you're a hypochondriac and you exhibit SIBO these do increase the probability of you having hEDS.

Not really. SIBO prevalence increases with age and goes up to 80% in elderly patients.

hEDS prevalence is between 0.005% and 0.02%.

The symptoms/diseases you listed are very common. We don’t really use hypochondriac anymore but the reason these are common is because they’re vague constitutional symptoms that have 1000 different possible causes or nothing at all.

> What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.

There is nothing unorthodox about this, it’s part of the 2017 international criteria for hEDS.

https://www.ehlers-danlos.com/wp-content/uploads/2022/03/Mal...

Well if the actual hEDS prevalence is a lot higher than that then it would upset a lot of your other numbers.

The presumed prevalence of hEDS used to be 1/50K, then 1/15K, then 1/5K (you are here) and now more recent research has it 1/500 (post 2019). So I don’t take much stock in presumed prevalence given the history of it. What are the odds that they got it wrong all those other times yet completely right this time.

The problem with first presuming this prevalence and then designing diagnostics around it is that of course the measured prevalence using these diagnostics will match the prior assumptions.

I’m of the view that it’s ~1/50 (2%) depending on ethnicity and that >90% of these are rather mild and very difficult to detect yet still show up as comorbidities. I currently don’t have the evidence I would like for this theory, I do have enough for my own beliefs. Until I get my hands on enough relevant WGSs I will not have definitive proof.

I’m not sure what you mean by designing diagnostics around an assumed prevalence. The 2017 criteria is pretty broad and I’m not sure how this was influence by assumed prevalence.

Is there a reason you suspect a connective tissue disorder to be the unifying diagnosis? I have not heard this theory before.

Only ~15% of people with a pre-2017 diagnosis of hEDS met the newer 2017 diagnostic criteria so the new criteria was a strengthening of thresholds. It's assumed within the patient community is that this was done to ensure that hEDS remained a rare disease. The rare disease classification is required for many NIH grants. The NIH rare disease threshold is (60/100,000) and even a (1/500 or 200/100,000) would cause hEDS to lose this status. The 2017 criteria has been a source of controversy. There has been a fair amount of research since then, e.g. https://bmjopen.bmj.com/content/9/11/e031365. But if there is one thing I don't trust doctors with (or medical researchers with) it's statistics.

The main thing I focus on is the lack of the distinction between hEDS and HSD, there appears to only be a weak association to severity with everything else about it being entirely proportional to the severity. I.e. both conditions appear to be the same thing. There is just so much randomness between individual doctors, and even within the same doctor, that even the severity link is very weak. US doctors especially are reluctant to diagnose with hEDS because of the presumed rarity but also a diagnosis of hEDS can apparently screw up the clients insurance - and as there is no known treatment they don't see the point of doing that. So while it's generally accepted that hEDS is 1/5,000 and HSD is 1/600 I don't see a difference between hEDS and HSD so it all goes into the hEDS bucket. Especially when doctors are also bad at diagnosing the hEDS comorbidities and without those they generally assume they're seeing a presentation of benign hypermobility.

The other thing I focus on is the strong predisposition to Long Covid by those with hEDS/HSD. Dr. Jessica Eccles is doing great research here and if anyone in the medical community is going to find out what I have seen it will be her. Dr. Jessica Eccles has a psychiatry background and which helps her use the psychiatric comorbidities of hEDS to find associations that would not be clear if only using standard diagnostic criteria. Her claims are not as strong as mine but she does have to work within the medical community and can only push so hard, even still her claims are pretty strong and she does provide the evidence for them. She is getting published. I expect her claims to get stronger once she is able to collect more evidence. She is currently using Generalized Joint Hypermobility https://bmjpublichealth.bmj.com/content/2/1/e000478 but notes that the distinction between GJM, HSD, and hEDS is rather blurry and I think in time, when she has more evidence, she will start to challenge the standard diagnostic criteria more forcefully.

As for my own research, I did an unofficial study on the patients of a Long Covid clinic and found that 30% have hEDS/HSD which would be statically impossible if hEDS/HSD was at 1/500 and could only happen if the true incidence rate was closer to 1/50. It's reasonable to expect some sampling criteria basis in sampling from a clinic and not the general population but in testing for such bias I was only able to find a weak effect and nothing anywhere near close to the measured 10x.

So yes, I do believe that the hEDS connective tissue disorder is the unifying diagnosis responsible for huge number of undiagnosed conditions. Clearly not all but possibly the majority and at least the plurality. I think it's the most under diagnosed condition by absolute numbers and work should be focused on correcting that until it is at least the second most under diagnosed condition.

The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive.

For every case of "It took 8 doctors over the course of 3 years to get a diagnosis" there are 5000 cases of "It took 1 doctor on one visit to get a diagnosis"

And "outliers" aren't necessarily exotic. Idiopathic disease isn't rare and difficult to diagnose.

The problem is the fat tail of rare conditions is really wide because their are thousands of them.

Say there are 500 rare conditions with a rate of 2 per 100k per year. That means one out of 100 patients will develop one of those 500 in a given year.

> The core issue is that the system is just not good at catching outliers, and the only conceivable way to do so would be incredibly wasteful and expensive.

But in this case, I don't think it would be "incredibly wasteful and expensive." The case study stated, "On her ED visits, she was discharged with the diagnosis of alcohol intoxication, despite her reports of no alcohol intake, corroborated by her family." She didn't need some expensive diagnostic test for a diagnosis, she needed a doctor to pay attention to what she and her family were saying.

And to disregard their previous experience with high-functioning alcoholics who deny everything when they mess up. I’d bet there’s a lot more hidden day-drinkers out there than patients like this.

As someone with a relatively obscure condition, I’ve gotten used to being the pachinko ball that falls straight down the diagnostic chart to the wrong conclusion. But I understand the numbers are against me.

Yes. High functioning alcoholics are not checking themselves into the emergency room 9 times over a year.

Should doctors never trust their patients?

What's the threshold for where doctors should begin to believe their patients' claims, as opposed to simply assuming they're merely some drug addict seeking another hit or someone lazy seeking time off work?

I'm someone who's specifically had GI doctors ignore what I say so intensely as for this conversation to have seriously taken place:

Me: "The [medication] might have worked, I feel slightly better, but it was way too strong. I had nearly all the major side effects that the instructions said to contact you if I get them. Is there any smaller dose, or could I try out something else?"

GI Specialist: "Ok, so would you like me to increase the dose? I can prescribe [double]."

Edit: meant to conclude that I think it's not just excessive distrust, and that it'd be absurd and cruel to just always distrust patients completely -- that doctors definitely seem to ignore patients heavily, especially if they're in any way abnormal.

Doctors are human. how did the rest of conversation go? did you explain that they misunderstood what you said?

Also, Did you consider just taking half the dose?

They can't be human too and make oopsie whoopsies with no repercussions while demanding unlimited deference from society.

What is this "unlimited deference" you speak of?

I dont think doctors should be elevated to some super-human status. They are human. Many of them do a tricky and socially useful job, but there is nothing magic about it or them.

The rest of the conversation was mostly uneventful, I did explain it but got told that it was the smallest dosage available. As for the doctor personally he mostly just acted like it was a misunderstanding and not actively not paying attention to what I was clearly saying, but I'd have to say that's a pretty incredible lack of listening/language comprehension for a native english speaker with a college degree. I sure didn't trust that doctor ever again to be paying attention or properly respond to my symptoms if he could hear the exact opposite of what I said.

And as for dose, it was a medication measured in micrograms -- I'd have to be able to carefully measure microgram amounts and put them back into new capsules, it wasn't very realistic. I wound up finding alternatives on my own.

As an aside, I actually have FAR worse stories of GI doctors being incompetent and careless, that one just seemed the most relevant to the topic there.

One other funny one seriously went like:

GI Specialist Dr., "No, you can't really be feeling pain there, the intestines don't have any nerves"

Me, "So why did you say I needed to be sedated for my colonoscopy because it would be too painful otherwise?"

Dr, [angry response about if I want to just argue or let him do his job]

If you can't tell, I soon switched doctors after. But overall that sort of encounter, or things like even violating their own medical association's recommendations such as with prescribing PPIs and Antibiotics simultaneously to a patient already at higher risk of c. Difficile or more than one doctor not being aware of which painkillers are NSAIDs (Yes, really! One GI and one Urologist) has really reduced my trust in specialists, at least in Texas. They so, so, so often seem to just ignore or disbelieve patients.

I think people have pretty unrealistic of expectations for doctors, and am really curious where it comes from. They are all humans with variability, and some aren't even particularly smart or even good.

I get being frustrated to work with a bad doctor, but the outrage seems deeper, like people are frustrated that they even exist.

I would imagine the expectation comes from them being very well compensated, and supposedly very well educated and trained experts that people entrust their current and future wellbeing to, and who try very hard (often successfully) to minimize their own accountability.

One would expect a nurse to know less about which medication is likely to produce the best outcome in a given patient than a doctor, but the opposite is often the case due to some mix of the average doctor’s ego, and their investment and presence around patients over prolonged periods.

Many doctors appear frustrated that patients exist, they’d rather just look at a list of symptoms and write a prescription without acknowledging the individual.

>I would imagine the expectation comes from them being very well compensated, and supposedly very well educated and trained experts that people entrust their current and future wellbeing to, and who try very hard (often successfully) to minimize their own accountability.

I just think this is delusional. Pay, and education, and accountability do very little to make them superhuman. similarly, just because people dont have good alternatives to doctors, doesnt make doctors good at their job or their expectations rational. That is wish casting, and not how the world works.

I think it is more realistic to think of them like a mechanic who you are asking for advice. They might shrug or give their best guess, but they aren't promising anything. At the end of the day, it is your car and your problem, not their problem. They might try to help, but they dont owe you anything.

I guess I dont think patients are entitled to results or anything else from doctors, besides trying not to leave them worse off and maybe a mild positive intent.

I replied to your other post in this chain, but felt like adding:

Does a bad mechanic leave you in physical pain and have the potential to leave you suffering worse than before you arrived?

Can you avoid the problem of a bad doctor by just getting a new body?

Remember that the origin of this discussion is in many doctors not believing a woman despite reasonable evidence to the contrary.

Nobody would be outraged if they still were broadly and even justifiably wary but put in ANY effort at all to attempt to at least humor the possibility she wasn't an alcoholic, especially after passing psych screening tests, however primitive.

And sure, she could have gone to doctors other than ER doctors, but that is why I mentioned my own experiences that it isn't very different with (at least some) specialists.

Going a bit back to the mechanic analogy, it's hard for people who are busy and suffering to make extremely well thought out and slow decisions in that state, especially if there's sometimes enough improvement they can seemingly be recovered.

I think the thing that gets me about this example is everyone comes into it with perfect hindsight, and then projects their own biases about lack of effort and care. If it was so obvious, then the woman should have been able to diagnose herself, or any of her family and acquaintances. It's not that clinicians didn't try to help, as some people claim. They gave her CT scans and psychiatric assessments try to figure it out, some of which she refused. It is easy to say that the doctor simply should have trusted her statements, and use them as a basis for further research, which may have identified the cause more quickly. However, people don't have an answer for how this would play out the other 999 times out of 1000 when the patient is lying or in psychiatric crisis. Armchair doctors say it would have been obvious if they trusted her and kept her overnight for observation. This ignores the fact that this is not what emergency departments are typically set up to do, if they did, they may have seen her blood alcohol decrease, consistent with her lying. For all we know, she left the emergency room each time with the recommendation to seek help from a specialist, but people fill in whatever narrative they want.

Regarding your questions, I do think both doctors and mechanics have a responsibility to try not to make things worse than if they had done nothing at all. I don't think the doctor is here made her condition worse.

If I have a broken car, it's my responsibility to fix or replace it, not the mechanics. If I don't like the service a mechanic offers, my choices are find a new one, do it myself, or go without.

I think people would be better served if they thought about doctors in the same manner.

Yes, people are frustrated at highly paid and educated specialists being paid large amounts of money by them while in severe pain, and sometimes not getting help.

Just like they're frustrated if they don't listen at a grade school comprehension level, which absolutely is not superhuman.

Are you autistic by any chance? If so, I recommend trying to think in terms of the suffering people experience specifically because of the circumstances and because of a common social treatment of distrust and inattention.

E.g. I'll be far more bothered by someone who pretends to listen then ignored me, or who actively accuses me of not feeling pain, than someone who merely does a bad job -- i didn't, for instance, complain about my first GI specialist who merely did a bad job but always paid attention and tried to work slightly more than a chatbot in terms of effort put.

And effort too there is relevant, especially someone in a context of great luxury and not insignificant "authority" (i lack a better term rn) afforded by their position.

Accurate grade school comprehension 100% of the time IS superhuman. However, I agree that some people probably half ass it and do worse than their best. I think it is fine to be frustrated when someone does a shitty job for you.

I think the interesting point for me is the "authority", or social part of it. This seems to be a projection from the patient, and then they get upset that doctors dont reciprocate.

This is what strikes me as screaming at the clouds. Respect, authority, and trust are in the eye of the beholder. To the degree that there is a mismatch between expectations and reality, the error is on patient for projecting a false reality. Then they are angry when reality doesn't match of with their imaginations.

I also think it is weird to place such broad expectations on doctors as a class of people, as if they are all the same. Some are great and some are shit. Most are somewhere in-between.

If the anger is that doctors are paid more, that doesnt make sense to me either, because it is just supply and demand, not some moral social quality of doctors that make them better humans, and therefore deserving of more luxury or financial success. It seems a weird special expectation that people have constructed for doctors. In contrast, Nobody has an elevated moral expectation of bankers just because they make more money.

I just think that people would be happier, and perhaps get better care if they based their expectations in reality.

You shouldnt view health as a responsibility you can outsource to a doctor. No doctor will care about your life more than you do. Doctors come in all levels of competency, and it is your job as owner of your body to shop around. Some people desperately want blind trust and freedom from responsibility, but if they go down that path, they are embracing a fantasy,

> And to disregard their previous experience with high-functioning alcoholics who deny everything when they mess up. I’d bet there’s a lot more hidden day-drinkers out there than patients like this.

I'd rather them disregard their bias than disregard their patients. If someone insists they don't drink when challenged with the BAC data (especially with corroboration like in this case), do a test to determine if they're lying or not. Don't just assume they're lying.

But doctors often are arrogant and unwilling to admit error, even to other doctors. The best you can sometimes do in those situations is to get bossy and try to take control of the situation (e.g. I know you're assuming I'm a lying alcoholic, but I don't drink, so explain to me how I could be intoxicated without drinking...what tests would you need to prove that...), but not everyone has the confidence to do that or to do it only when it's needed.

When I was extremely sick, I was super frustrated with the 15 Minute Appointment. It was more infuriating than the things that inspired me to bitterly joke "They majored in medicine and minored in hubris and contempt."

Some of my big breakthroughs came in ER visits where they are a little more focused on problem solving and less on getting you out the door in time to keep to schedule. It doesn't live up to the fiction of House but sometimes if I had good rapport with an ER doctor, they took a few minutes to think about how best to keep me out of their ER in the future.

This sometimes got me what a relative called "real drugs instead of tea and sympathy."

We have a broken system. I don't know how to fix it but some of the criticisms of specific people in the broken system implicitly assume "These people are the problem!" And that doesn't really fit my firsthand experience.

> little more focused on problem solving

I actually had a great ER experience along these lines. I felt bad being there after it became clear that I was going to be fine while there was a lady wailing in pain about 10 feet away, but at least I left with a lot of things to discuss with my regular doctor and I at least knew when I should/shouldn't worry in future situations.

In my second paragraph I pointed out that this probably isn’t bias, this is Occam’s Razor. If the razor cuts against you, it’s your problem as a patient to fight back.

Is that fair? No. Does a medical professional have an obligation to take a patient seriously? Yes. But I bet busy physicians have an hard time avoiding being biased by direct experience with unreliable patients: drug seekers, people with mental health issues, people who want the drug they saw on Fox News ads, etc.

Women get dismissed a lot by doctors. (This is common enough knowledge I'm not going to provide citations in spite of being a woman posting on an overwhelmingly male forum. If you downvote this without doing a quick google: There's your problem.)

When I was a homemaker and having serious health issues, I sometimes wore a suit to see a medical professional to try to get them to take me more seriously. I used to bitch to friends that I felt like pinning a list of my academic achievements to my lapel.

"Oh, it's a homemaker. Must be stupid! Couldn't possibly have been a good student in school! Smart women all have serious careers."

Yeah, sure. That's reality./s

If 200 people presented with alcohol intoxication and no history of use, 199 would be secret alcoholics sneaking booze, and maybe 1 would be someone with this condition. The previous case I read about, they forced the poor guy to inpatient for weeks to rule out alcohol use. It's not just 'doctors don't believe women' it's 'doctors don't believe (probable) addicts'.

Yeah, as a man nobody would believe me either. I was in hospital with acute pancreatitis and they found at the same time I had a fatty liver. Both are often explained by heavy alcohol intake. The truth is I hardly drank at all (I had perhaps had a single bottle of beer in the whole previous 12 months) but nobody would believe me. I ended up being told to never drink alcohol again.

Did you find a solution eventually ?

Not really. Since then I've been unable to eat bananas due to a severe bloated feeling (even a tiny bite causes it), and I found a Japanese research paper about a banana allergy inducing acute pancreatitis. But I don't know for sure if it's linked.

I've continued to drink alcohol in moderation for another 15 years+ without issue.

Yeah I have to go with my wife to doctors visits or they ignore her. All I have to do is sit in the corner and not say anything but my presence is still required for 50% of the doctors she’s seen over the years.

I don't thin this has anything to do with sex...

A coworker of mine had back issues, they only took him seriously when he was brought in via ambulance because he couldn't stand a year later after multiple visits to both his GP and hospital.

And they still didn't take him seriously, they were going to discharge him in a wheelchair until he pissed himself because he had lost all control of his lower body and couldn't even tell that he had to pee.

White guy, steady job and good insurance. To the doctor's it look like someone trying to get pain meds.

Edit to change tone

I'm not suggesting gender is solely and entirely The Reason. I don't think I should have to say that.

But it's a factor generally for women. Which doesn't assert men always get fabulous results every time, nor does it in any way "rebut" points other people already made elsewhere in this discussion.

I was just going to ignore the ridiculous pile on to my comment, but it's not stopping. Folks are blowing it out of proportion.

Which may not stop but now I'm on record with that observation.

You could have just posted “people get dismissed s lot by doctors” and not bring attention to your username or gender, but ya did

Your comment assumes no one remembers me and no one reacts to my username and gender unless I point it out. This seems implausible to me.

I wish it really were that simple. I dont think it is.

Additionally, your suggestion fundamentally dismisses my main point: This is apparently a bigger issue for women than men generally.

And when men act like it's unreasonable for a woman to be aware this is a bigger issue for women and to toss that detail out there in public discussion, it's just a no win situation for women.

The people most impacted are routinely treated like they are whiners who should just shut up and accept that no one will bother to care.

And not just about gender. People of color also routinely get treated crappily for being the ones who bring up X issue when no one else will and they bring it up because they are the ones aware of it.

Would it be better fixing the US-style healthcare system to make it a more of a market system or trying the Canada-style healthcare where you’d have no option to go see a “woman-friendly clinic” that popped up out of sheer demand for it?

FWIW I hardly look at usernames and judge the comments anonymously, at least at first.

No downvote from me. My wife did her Univerity thesis on this topic, and it's hard to correct for 100 years of RCTs that didn't consider gender, and were mostly male-centric. Never mind a system that churned out mostly male doctors. However, in most Western European countries, we now have a good balance of male/female doctors (trending massively towards more females) and being not believed is much less of an issue.

And that is the tradeoff. 99.999% of the time the person is lying, confused, or crazy.

I doubt it was lack of attention, but lack of trust instead.

You get much further with crazy people by not directly challenging them.

I'd like to watch a hidden camera reality show in which people try to convince doctors to take their conditions seriously.

Meet Amanda- will she be able to convince Doctor #3 that she's not a secret alcoholic?

I don't really think it's about catching outliers.

With doctors it's about catching anything that isn't obvious.

If you've broken a bone or have a tumor or one of the standard tests comes back out of range, their job is easy. If you haven't they're completely useless and will prescribe either an SSRI or a stimulant.

Very many people have very many conditions that aren't trivial to diagnose and just get ignored.

It's not because they can't, it's because they're not interested and resources aren't organized enough to be able to give the appropriate amount of attention to a person.

The thing is it wouldn't have been expensive to test. In the article they describe the testing they did after they treated her for auto-brewery syndrome. The gave her an oral administration of glucose and then observed her alcohol levels. It would lead me to believe a pretty easy means to diagnose auto-brewery would be to check BAC, give them glucose and then retest BAC. If it goes down they at the very least aren't currently suffering from auto-brewery. If it goes up, that would be a pretty strong indicator they are suffering from it. Have an orderly or nurse observe to verify no alcohol was consumed if you want.

> I feel like auto-brewery syndrome is well known enough in pop culture

Never heard of it until now.

It may depend on what TV shows you watch. It's been on Grey's Anatomy, the Good Doctor and House MD. I thought it was on Chicago Med once or twice too.

I don't think it's ever been on House.

Don't recall it from memory or find it on a quick Google search.

Posisble I'm wrong though.

The problem of "how doctors think" was well-documented over 15 years ago by Jerome Groopman. As a result, I think the problem is well understood, at least by those who are aware of books like Groopman's. Unfortunately, his message hasn't traveled far despite his reputation and book sales.

http://jeromegroopman.com/

Yearly checkup, new lab doctor asks how many hours have you fasted. You reply "Zero, but I've only consumed my own alcohol".

Still not worth it.

I wonder if autobrewery syndrome is less common in cultures that eat fermented foods, such as sauerkraut and kimchi.

Probably, it's why I eat a lot of Greek yogurt. Fermented foods keep the gut bacteria in check.

This sounds like an awful disease to have. As someone who suffers from fungal problems, f*ck em. I hate fungi so much .

Yeast (the things responsible for fermenting foods) are fungus. So if you like fermented foods, you shouldn’t hate fungi.

Greek yogurt is full of lactobacillus bacteria, not fungi.

Kefir, a food similar to yoghurt, is fungus-based fermented food. The Kefir grain contains a symbiotic culture of yeasts and lactic and acetic acid bacteria.

Most fermented foods are not yeast-fermented. Alcoholic beverages are.

hating fungi is a bit like hating your own liver or stomach. They are an absolutely fundamental component to the web of life on earth, including your own.

I'm not sure “less common" makes sense for a condition so rare it has only been seen a hundred or so times.

I'm guessing there is very little fermented foods would help with.

Instead, autobrewery has more to do with yeast exposure following systemic antibiotics in especially vulnerable people.

You have to wonder how much damage to this poor woman’s liver was caused by the ED’s constant diagnosis of “go home, you’re drunk.”

Or the possibility of involuntary DUIs..

From the article:

> Auto-brewery syndrome may carry substantial social, legal, occupational, and medical consequences for patients, and awareness of this syndrome is essential for clinical diagnosis and management.

>On her seventh ED visit, the patient presented with slurred speech, alcohol odour on her breath, and an elevated ethanol level of 62 mmol/L.

About 0.285% or 2.85‰ (!). For a 200lbs (90kg) person about 14 drinks[0] for a 120lbs (55kg) person about 11 drinks.

TL;DR: The issue was resolved with a low carb diet (about 6 months) and putting her on courses of fluconazole.

[0]1 drink = a 12-ounce (350 ml) beer or 5 ounces of wine (140 ml) http://www.clinlabnavigator.com/alcohol-ethanol-ethyl-alcoho...

> About 0.285%

That's pretty high and aligns with the description of slurred speech and other signs of inebriation.

I wonder if those afflicted ever connect diet with severity of symptoms as it seems that high carbs increase ETOH production.

I also wonder if the constant exposure leads to addiction and if withdrawal complicates treatment.

As someone who was a home brewer, the amount of fermentable sugar this woman must have consumed over the Days of fermentation to cause a BAC at that level at one point in time is astounding to the point where I’m suspicious she wasn’t drinking

I’m talking about the equivalent of consuming a pound of honey for multiple days straight, and more likely something like multiple pounds somehow turbo fermented to hit that alc%. If she didn’t have this medical problem, she would have had five others soon.

For those who don’t know, there is an upper limit of natural fermentation where if you try hard, maybe you hit 20% alc/vol. Four pints of it to hit those numbers at the low end (120 lb / 55 kg person)

> there is an upper limit of natural fermentation where if you try hard, maybe you hit 20% alc/vol

In a drink. In your stomach your blood will absorb that, meaning the yeast will just continue to make alcohol forever until you die since the yeast tolerates much higher alcohol percentages than you do.

Yeast makes sugar into about half alcohol, so 200g carbs would be enough for about 2% blood alcohol at 5l blood. 200g carbs isn't that much, you'd get it from some cake and soda at a party.

Ok that’s interesting. But at the same time her body is getting rid of 10 mL of alc an hour or so too? She’d have to get past the first ~10g of carbs, every hour? 240g base carb plus another 200g at one point to hit the mark?

Edit: 20g of carbs converted to alcohol would be removed every hour? My quick math sucks

> “Genetic predisposition for inactive aldehyde dehydrogenase enzyme and subsequent inefficient alcohol metabolism, may also play a role. In our patient, we suspect her recurrent antibiotics for UTI and dexlansoprazole use led to gut dysbiosis with potential contribution of genetics, resulting in auto-brewery syndrome.”

If the patient was genetically predisposed to have inactive ALDH, that would explain how they could reach such a high BAC without excess carbohydrate or exogenous alcohol consumption.

This shows the absolute lack of humanity from those doctors, that refuse to listen to patients. Now that was a resolved case, what about all the other cases? I am living with someone that was told for decades that it was all in their head and that they had psychiatric issues before finally they decided to listen and map the symptoms and realize it was a simpler endocrine problem. This is how patients are treated and especially if they are women and/or racialized.

It goes both ways. How many alcoholics had this doctor treated that lied about their drinking? We can expect our doctor's to be perfect but addicts lie, and it's normal to expect addicts to lie. I think a little empathy would have gone a long way here, don't get me wrong, but saying they have no humanity is a bit much.

I do not think it true that it goes "both ways." Patients do not have a collective responsibility to doctors. Patients should not go untreated because other patients lie about their addictions. Being a doctor means exactly watching dozens of horses go in and out the door each day and saying "that's a zebra" before the zebra makes it to the exit. There's a fundamental responsibility to perform differential rather than normative diagnosis.

Patients do not have a collective responsibility to doctors, but I dont think doctors have the responsibility to provide a diagnosis at all.

I think people have strange and exaggerated expectations.

You don't go to a car mechanic and expect them to have all the answers and perfect accuracy. The expectation is that they will take a look and provide their fallible opinion.

If a particular doctor is clueless, that's what referrals are for. You don't just shrug and move on.

When there are single digits for the number of people experiencing this, and many digits for those who are alcoholics, you cannot expect anything but Occam’s razor.

Exactly, that is where patient responsibility for their own care comes into play.

Doctors should be held to higher standards than auto mechanics.

You can make up whatever standard you want, but it will fail when an impossible expectation collides with reality.

Reality is messy, and optimal care has a non-zero failure rate.

My standard is that doctors listen to patients, which they don’t do because they don’t respect them. They think they’re all knowing, incapable of mistakes, and let their personal biases rule. Every doctor I’ve been to has struggled to listen.

Listening is not an impossible standard.

I have never expereinced a doctor that doesnt listen to their patient. However most dont take everything the patient says at face value.

Processing, weighing, and interpreting what patients say is a fundamental part of their job. Sifting through crappy data and figuring out what is relevant.

You are paying them for their personal biases.

“I haven’t drank alcohol.”

The doctors interpretation:

“She’s clearly a drunk.”

Like I said elsewhere, a night in the hospital would have solved this immediately, but the doctor was unable to get past their own bias.

I don't disagree, but what you are missing is that those biases are correct 99.9999% of time.

It's unclear if the doctors she saw even knew that Auto Brewery syndrome existed.

Six nines? Really? Sounds like you need to show evidence of that claim.

Severe auto-brewery has been documented on the order of 20 times in the history of the western world. Thats why it is worth publishing a paper about, and why doctors dont suspect it, and might not even know about it.

How many people have have gone to the doctor and lied about their alcohol use? 6 nines is 1 a million patients. There are probably more nines than that.

Now you’re just mixing up sub groups and definitions to meet your criteria. Mine are simple: doctors should listen more.

Do you think it might sound similar to someone clueless about cars discussing an engine issue with their mechanic?

No, cars are not able to talk to the mechanic to tell them where it hurts.

What standard of care are you proposing? Please be specific.

Auto mechanics frequently misdiagnose problems, especially those caused by electrical or software faults. But in the worst case they can usually just keep following the manufacturer's service manual and replacing parts in a trial-and-error process until the vehicle works again.

The human body is orders of magnitude more complex and there is no service manual. We have a few evidence-based medicine clinical practice guidelines but those cover only the simplest of cases. For anything more complex, physicians have to fall back on theory, intuition, and experience. It's not surprising that they sometimes get it wrong. And sometimes there's just no way to make a definitive diagnosis for the root cause of a patient's complaints and so treatment is necessarily symptomatic; this can be tough for patients to accept. I'm not trying to defend clinicians who make preventable errors or dismiss legitimate patient concerns but we need to be realistic about what is achievable given the current limited state of medical knowledge.

The standard here was the doctor didn’t listen to the woman. He could easily have found she was lying or not with a simple overnight visit to the hospital. Put her in there for one night, see she’s not drinking but still drunk, and that’s it. Instead, she suffered for ages.

Listening is a simple standard. Doctors don’t listen because they don’t care further than getting more patients through the door faster.

If I tell my mechanic there is a problem with the steering, he’s not going to change the oil and send my car out, he’ll check the fucking steering.

Did the woman come in and say "I have auto-brewery syndrome, and I want you to test me for it"?

If so, then the comparison is off. It isnt that the doctors "didn't listen", it is that they didn't correctly deduce a 1 in a million cause, based on the information they had.

She came in, the doctor asked if she had drunk alcohol, she says no, what more is there to understand? This doctor didn’t listen. If he had, even if he didn’t know about this specific disease, he could have started tests and brought in other doctors. Instead, suffering. Not hard to understand. Doctors don’t listen.

You keep saying they don't listen, but there's no evidence they didn't hear what she said. It seems your problem is more with how much weight they put on that information, and how much effort they put into getting to the bottom of things.

Most doctors aren't interested in playing Detective for the extremely rare cause. They treat the most likely cause given the information that they have on hand

So you’re admitting they don’t listen, they just try whatever’s most common.

I think you are hung up on the word listen, and I am saying there are a lot of things that happen after they hear what a patient says.

patients aren't saying "I have auto brewery and would like you to confirm it".

Patients are instead reporting symptoms which the doctor then has to interpret and find a likely cause. Even if they 100% believe the patients, the diagnosis may not be obvious. IF they dont 100% trust the patient, or think they may be confused, then it is even harder. Patients ARE very unreliable.

So if patients are so unreliable, why not send her to inpatient for one night to find out? There was a really simple way to solve this.

To find out what? What are they looking for in this hypothetical?

That's my whole point.

Why not make her do hand stands? Why not make make her wear pink?

You are picking a test because you know the disease.

They think she’s a drunk, she says she isn’t, the easiest way to find out is ensure she can’t have alcohol. Not that hard to do at a hospital! Seems like a simple idea to me.

Remember, it took several visits to figure this out, and no one even tried this simple thing to suss out if she was truly an alcoholic.

Why do you say they never tried this? were you there?

If they kept her at the hospital and took multiple BAC measurement, her BAC would be going down, making her look like a drunk.

The only way they would see BAC spike is if they loaded her up with carbs, which only makes sense to do if they already suspected auto-brewery.

Its very common to blame everything that a trans person may have to their hormones. It even has a name, "trans broken arm syndrome". This leads to a lot of trans people to not disclose their medications in hopes of receiving proper care.

They are not trans but yes it is even worse for them.

I wasn't trying to imply that they were, only adding to the discussion.

I think there is a major disconnect between the public expectation for doctors, and what their role actually is.

It is more accurate to think of a doctors as job as offering aid to resolve a problem if they can, and not ensuring a particular outcome.

People like to place the responsibility for the health on the doctor, but in reality, the responsibility always lies with the patient.

There was a Scott Alexander post about how the point of expertise is the ability to out predict the statistical odds.

I’m struggling to find that post.

Edit: Found it. https://www.astralcodexten.com/p/heuristics-that-almost-alwa...

> with a strategy of antifungal therapy and a low-carbohydrate diet.

I wonder if she ultimately switched to a meat only diet or at least tried it.

The term "rare" disease should be replaced by "rarely diagnosed" disease.

The difference is subtle but hugely important.

Is it not a rare disease? It has been recorded around 100 times worldwide, and is notable enough to publish a paper when it is observed.

It is probably more common than diagnosed, but still incredibly rare!

> Is it not a rare disease?

We don't know. Possibly.

> It has been recorded around 100 times worldwide, and is notable enough to publish a paper when it is observed.

Indeed. Had it been recorded more often, it wouldn't be as notable.

> It is probably more common than diagnosed, but still incredibly rare!

Hence rarely diagnosed. :)

Nonsense. It could be 1,000X more common and still be considered a very rare disease.

It is safe to say it is rare.

A disease is considered "rare" in the US if less than 200k people have it. If there 200k Americans suffering from spontaneous drunkenness, we would know it.

I'm a little surprised there is no mention of flatulence in that article. The reddit post in aaron695's comment does bring it up, and intuitively I think it should be present.

I self-diagnosed (so yeah make of it what you will) auto-brewery syndrome in myself, after I had ingested unusually large amounts of live yeast - I had been making cider and drinking it a bit earlier then recommended - while the yeast was still very active, as I was playing around. Only symptom I noticed was flatulence after carb-heavy meals (didn't notice becoming tipsy, but I'm not very good at noticing that either ig). Like I literally farted once a minute for a day one time. However this only lasted a very short time, maybe a few days. I still had a very mild version of that like a month or two later (from memory so idk) and like a year or two later it was completely gone.

How can you self diagnose yourself from a symptom that's not even included as a symptom for what you're self diagnosing for?

Well I didn't think of it in terms of the label auto-brewery syndrome. Rather I was just thinking "I guess the yeast has colonized my gut". How, well because I have seen and listened to fermentation and admired the bubbling process - it's very satisfying btw. And so it seemed very natural to assume that the same thing was happening inside me.

https://www.youtube.com/watch?v=DV_9tfFyY00

Brooklyn Lager + 24 month aged Canadian cheddar + rosemary & olive oil Triscuits = flatulence so bad it will keep you awake or you will fart yourself awake multiple times. Also, bad gas pains.

A delicious combo though

I think in 2024 they just call that "girl dinner".

how does this start?

Second and third paragraphs under "discussion":

> Auto-brewery syndrome is thought to result when microorganisms capable of fermenting alcohol from carbohydrates outgrow normal gut flora.6 Although population-based studies have shown that gut alcohol fermentation with low levels of endogenous ethanol can occur even among healthy people, blood ethanol levels rarely reach concentrations high enough to cause intoxication.7 Auto-brewery syndrome is uncommon because it requires several host factors to interact with substantial overpopulation of fermenting microorganisms, and high carbohydrate consumption.6 Comorbidities such as diabetes, liver disease, gut dysmotility disorders, and inflammatory bowel disease are associated with auto-brewery syndrome through mechanisms contributing to increased levels of blood glucose and decreased ethanol metabolism.6,7 Genetic predisposition for inactive aldehyde dehydrogenase enzyme and subsequent inefficient alcohol metabolism, may also play a role.6 In our patient, we suspect her recurrent antibiotics for UTI and dexlansoprazole use led to gut dysbiosis with potential contribution of genetics, resulting in auto-brewery syndrome.

> Commonly implicated fungi responsible for outgrowing normal gut flora in auto-brewery syndrome are Saccharomyces cerevisiae and Candida species including C. albicans, C. tropicalis, and C. glabrata.2 Bacteria have also been cultured from patients with auto-brewery syndrome. Although the role of bacteria remains unclear, a recent case–control study proposed Klebsiella pneumoniae as an important culprit.7–9

In her case, I would guess a lot of antibiotics since the article mentioned frequent ciprofloaxin treatments for UTIs.

It's wild that probiotics aren't considered medically necessary and prescribed alongside antibiotics at this point.

Probiotics are really limited in scope compared to what bacteria you naturally have, unfortunately. They’re far from a silver bullet. That’s why things like fecal transplants exist.

Yeah but obliterating your gut flora without even making an attempt at remediation is madness to me. It's like saying that people who quit smoking shouldn't bother going to the gym because their lungs are already busted.

I haven't looked at the literature in a while, but several years ago I saw some research which concluded that probiotics generally do not directly recolonize the gut; instead, they temporarily prevent colonization by "bad" things and help maintain a healthy environment until diverse recolonization happens gradually over time.

I also saw some evidence (backed by personal experience) that "complex" naturally fermented foods (sauerkraut, kimchi, etc) were more effective than single-culture probiotics.

I was prescribed probiotics every time I was prescribed an antibiotic in the last few years, even by a dentist. This may vary a lot by country, though.

It probably depends on a country or a doctor. Here in Czechia I never got prescription for antibiotics without both doctor and pharmacist advising me to also take probiotics.

The metabolic system is like a ecosystem, where every intervention has a fairly large spectrum of unknowns. Probiotics can do harm, just like antibiotics, or it may do nothing, or it may improve health or reduce symptoms. Generally it doesn't have long term negative effect so it fairly safe, but I can see how doctors would be careful throwing in additional unknowns, especially initially when testing if the antibiotics themselves has the intended effect without major side effects.

We live in symbiosis with the gut flora, and the tools we have to fix problems are crude and based on trial and error.

That is true of literally anything ever.

It's becoming clear that the risks of probiotic supplementation to counteract the damage caused by antibiotics are substantially lower than the benefit of actually counteracting the damage caused by antibiotics.

Yes, you can get cramps or diarrhea or brain fog or even SIBO, but that all sounds a lot better to me than intractable c-diff or the growing number of "peripheral" health problems that we now know are at least somewhat related to gut health.

It seems like this is starting to get better here in the midwest US. I think the last 3/4 times I've been prescribed antibiotics (different doctors, different states) I was given a speech and take home sheet about needing to take probiotics with them. The 4th just gave the sheet and skipped most all the talking in general. No prescription for it on any count but that's no different than being told to take any standard dosage of an OTC (in lieu of making you feel better about going if nothing else was prescribed already that visit).

I think it also depends on the antibiotic how much you get recommended a probiotic. There was one I was given for a stubborn tooth infection and the endodontist was militantly clear that I needed to take a probiotic and spent about 5 minutes going over the signs of cdiff as it was a common result and can be so problematic. Still ended up getting cdiff anyways but at least I knew what to expect :).

It really sucks that you ended up with c. diff even with the probiotics.

But it's a relief that the doctors seem to care.

Here in the northeast at best they offhandedly suggest trying a probiotic, but give no advice beyond that. If you mention probiotic foods you get a shrug and a "sure that's good", but they never volunteer it.

Probiotics aren't one single thing. We generally lack evidence-based medicine guidelines for prescribing probiotics outside of a few limited situations, although this is an active area of research. Most of the OTC probiotics available to consumers are basically junk placebos.

https://blogs.bcm.edu/2023/08/11/reluctant-to-prescribe-prob...

A very notorious antibiotic for its plethora of side-effects.

The article seems to hint at her previous gut flora being wiped out by broad-spectrum anti-biotics taken for her recurrent urinary tract infections, thus allowing the fungi in.

There's talk of people trying to give themselves auto-brewery syndrome -

https://www.reddit.com/r/BrandNewSentence/comments/bn5e57/my...

I haven't pinned down a proper account of someone who's tried and if it works, proper testing and stuff. This is what bio-hackers should be working on.

Word of the day: Boofing is a slang term used to describe the process of ingesting a drug through the anus.

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