5 ms·

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,

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".

nerdponx 2y ago
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.
- jrockway 2y ago
  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.
  - failrate 2y ago
    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.
  - solveit 2y ago
    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?
    - andrewflnr 2y ago
      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.
      - nradov 2y ago
        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-hydrogen-breath-test https://my.clevelandclinic.org/health/diagnostics/12360-hydr...
        nerdponx 2y ago
        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.
        nradov 2y ago
        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.
        nerdponx 2y ago
        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.
Chinjut 2y ago
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 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.
cjbgkagh 2y ago
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 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.
- failrate 2y ago
  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.

nerdponx 2y ago

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.

jrockway 2y ago
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.
- failrate 2y ago
  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.
- solveit 2y ago
  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?
  - andrewflnr 2y ago
    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.
    - nradov 2y ago
      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-hydrogen-breath-test https://my.clevelandclinic.org/health/diagnostics/12360-hydr...
      - nerdponx 2y ago
        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.
        nradov 2y ago
        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.
        nerdponx 2y ago
        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.

Chinjut 2y ago

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 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.

cjbgkagh 2y ago

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 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.

failrate 2y ago
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.