8 ms·

I've been looking for relief from abdominal pain, bloating, poorly formed movements, and breathing problems for well over a year now. It started right after a r

I've been looking for relief from abdominal pain, bloating, poorly formed movements, and breathing problems for well over a year now. It started right after a round of antibiotics, which strikes me as a very clear cause-and-effect situation involving some sort of microbial imbalance. I don't think restrictive diets are a great idea, because I want to stay healthy otherwise and ultimately restore that balance, but curiously enough, I've found that wheat might be exacerbating some of these symptoms—despite eating it without issue my whole life. No matter how neutrally and deferentially I approach doctors with this info, I'm treated like a paranoiac for merely inquiring about certain possibilities like so-called SIBO. I'm pretty sure I'd get dragged straight to the loony bin if I ever mentioned parasites. Sorry for making this about me, but I wrote all this to say: this guy is very lucky he's a medical student. Even with similar evidence, I have a hard time believing he'd get medicine (and respect) as a single mother. The moment she whipped out slides like he did, they'd be writing an antipsychotic Rx.

vasco 2y ago
You need to prove your knowledge to doctors contextually, and even then it's much easier if they are not actively giving you a consultation. Doctors don't respond well to randomly dropping theories on them. If you respond to something by dropping an inappropriate paper for the illness or ask about rare issues when common ones would fit they'll stop listening. Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". It's rare to have someone capable, who isn't going to jump to conclusions and just complicate everything, so I get why they discard most of what people tell them.
- n8henrie 2y ago
  This is about the most charitable thing I've ever read on this site about physicians. As a physician with a degree in nutrition, I find most HN threads about medicine, nutrition, or the health system very frustrating, and in spite of it being the only area in which I'm formally qualified to opine, it's also where I've earned most of my downvotes (which prior to 500 internet points kind of mattered). I eventually learned to just bite my tongue here. Curiously, I think my "hacker spirit" is what drove me to medicine. In undergrad, I was spending 5+ hours per day reading medical literature (mostly nutrition, endocrinology, exercise science) and had decided that doctors were mostly idiots, and eventually decided to change majors from ME to pre-med. In medical school, I was a real handful to many of the lecturers, which I kind of regret now. Ends up it is really easy to publicly humiliate someone when they mis-state or misunderstand a minor detail that you've studied in depth, even if they have far greater expertise in the field. In medical school, residency, and practice (EM), I've learned a lot about why things are the way they are. In my field, many patients are entirely obsessed about some problem and completely lose track of reality when discussing it. It becomes part of their identity. They don't know how to read or evaluate medical literature, and they lack the background knowledge to the extent that even beginning a discussion is onerous. It's like your uncle who is far to one side or the other of the political spectrum and is well read but only in support of his biases -- yes, you might learn something this time, but do you really want to get into long discussion to find out? He already "knows" all the answers to many unstudied questions, and knows why the studies are wrong for the others. There are so many of these patient encounters that it is entirely infeasible to engage with even a small proportion of them and still get your job done, so you learn to nod, smile, and move on to determining whether or not a life-threatening emergency exists or not. You definitely don't have time -- at least in my field -- to really listen and consider all of these. Unfortunately it's not always easy to differentiate symptoms that are possibly psychological, exaggerated, self-limiting, or impractical / impossible to diagnose in my clinical context, from those that present opportunities for me to make a difference even if not a true emergency. I still think that many doctors are idiots that lack critical thinking skills and self-reflection, and unfortunately almost nobody outside of academics reads primarily literature that isn't forced on them (MOC). I've tried to show many friends and colleagues how to set up RSS feeds for pubmed queries for their topics of interest -- zero people have seemed impressed. In contrast, I think much of HN leans heavily on representativeness heuristic and doesn't consider likelihood ratios when evaluating their test results. Anyway, thanks for the considerate comment.
- theshrike79 2y ago
  I actually had a discussion about this with a very experienced gastroenterologist. They said that doctors love data. Don't come at them with theories or papers. Give them a food diary + symptoms, it helps a LOT more than "I think I have X".
  - dekhn 2y ago
    Doctors don't love data: they love a veneer of data on top of a seductive narrative, typically at a conference in Bermuda, after a couple of wine glasses.
    - littlechef 2y ago
      So take them a food diary and a bottle of wine??
- Pikamander2 2y ago
  The flip side of this is that doctors aren't infallible, and will often struggle with rare diseases that they don't deal with on a daily basis, or in some cases were never even taught about in medical school (such as recent discoveries). It's true that doctors have to deal with a constant flurry of "I did my own research and think this bruise I got yesterday might be liver cancer", but sometimes people with legitimately debilitating illneses slip through the cracks and have to aggressively advocate for themselves to get any real testing done, particularly if they have a very "let's wait a few months and see what happens" type doctor who never seems to make any progress on their own.
  - vasco 2y ago
    > but sometimes people with legitimately debilitating illneses slip through the cracks and have to aggressively advocate for themselves to get any real testing done Sometimes they do, but by definition it's likely not you. It's important to think here that everyone thinks "they are the informed one" or that they are the one that "might have the rare one". Same reason why most people have bought a lottery ticket in their lives or why everyone is of above average intelligence. I like being active in my medical treatments by doing my own research but I censor a lot of what I say to a doctor, it's usually more to make sure I understand what's going on and that I can double check things.
    - catlikesshrimp 2y ago
      It is too bad most people don't like all the dull gray truth in your comment. Everybody thinks they are the exception, for good and bad. On top of that, there are medical schools, not just one. A doctor might be following a [compulsory] guideline from his association / state / institution / college.
      - matheusmoreira 2y ago
        > A doctor might be following a [compulsory] guideline from his association / state / institution / college. I have no doubt they are, compulsory or not. When things go wrong, the first thing the judge asks is whether the doctor followed established medical practice, whatever that may be.
- hansvm 2y ago
  A technique I have a lot of success with is asking why <some observation> doesn't change their opinion. It leaves the doctor in a position of expertise and authority, so they're usually happy to spend the time teaching you. Normally I learn a lot about some gap in my medical knowledge, and sometimes the additional reflection changes the doctor's opinion and gives me better outcomes.
  - LorenPechtel 2y ago
    Depends on if their mind is made up. Yeah, I failed the food challenge test because you used the wrong thing! No, you can't use pork in place of ham--the trigger was something that gets added in the process of making it ham.
    - hansvm 2y ago
      Kind of. Even when their mind is made up, they're likely to try to answer (since the framing places them on a pedestal). Both you and the doctor will notice anything obviously wrong with the answer. I've met a few young doctors who would dig in their heels (different from explaining why they're right; if they're actually right and teach me why then I think that was an incredibly valuable opportunity), but you ought to, in most parts of the world, be able to fire them and find somebody actually willing to talk to you. Almost all of the time I meet doctors who handle the framework I set out exceptionally. Your pork/ham comment is interesting. For other toxins/allergens/..., I see doctors very explicitly examining every possible extra ingredient/factor before even deigning to consider that the bulk solid might matter (e.g., most chocolate allergies are actually to soy lecithin or one of the other mixins). I'm surprised anyone would rule out a ham problem just because they tested one kind of pork.
      - LorenPechtel 2y ago
        It's obvious he thought the problem was upstairs. If you're a medical mystery they're going to consider psych and some of them will consider it too much.
- m_fayer 2y ago
  Why is it too much to ask for doctors to take sufficient interest in their patients to clock just how sophisticated they are, and react accordingly.
- matheusmoreira 2y ago
  > Doctors don't respond well to randomly dropping theories on them. Because they are liabilities. If he follows along with your theory and you get worse, he doesn't get to claim he was following accepted medical practice. Plenty of smart guys turn into the doctor's worst enemies after things start going wrong. Wanna know what arguments they use in court against doctors who show patients this sort of respect? > I couldn't possibly have known > He is a doctor and I'm just a patient > My judgement was impaired due to my sickness If patients want to start dropping theories on doctors, they should be ready to share in the responsibility for the outcome. Courts have demonstrated that the vast majority of people are not ready to accept that responsibility. > Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". Well said. Many of my patients are illiterate. Imagine how hard it is to obtain informed consent. Combine that with internet diagnosis and it's a shit show. I have people asking me about the benefits of some YouTube charlatan's special himalayan salts on a daily basis. And that's when they're not already using those things and dismissing medicine as a corporate conspiracy to keep them sick and perpeptually consuming drugs. I have no problem with people who googled things, understood those things and who want my professional opinion on the matter. It only becomes a problem for me once they start trying to determine what the treatment is going to be. It's my name, signature and license on the prescription. The only options available to the patient are the ones I'm willing to write on that paper.
dcx 2y ago
Speaking as someone who went through this, running experiments with your diet is absolutely worth trying. It worked for me. There is actually a specific medical practice for this: look up "FODMAP". The idea is to temporarily cut out all likely suspects for a short period, see if that fixes things, and then gradually reintroduce them to identify the culprit. A gastroenterologist recommended this to me. It didn't help with my issues at the time as gluten is not covered by this cluster, but struck me as a very sensible approach. In my experience the medical system is unusually useless and dismissive with digestive issues. I think this is probably related to how little it can do in this area. 10-15% of the US has IBS, and this is a disease of exclusion. That literally means that the medical system acknowledges a cluster of symptoms, but has no idea what is causing them or how to cure them. I can imagine that blaming patients is easier than the alternatives for some doctors.
- jim-jim-jim 2y ago
  Sorry, I didn't want to turn my original post into an essay, but I've already done low FODMAP and various other restricted diets for diagnostic purposes, without any noticeable shift in symptoms. Only bread and sugar seem to be correlated, and not strongly. To me it's a curious symptom rather than the root of the issue.
  - jtc331 2y ago
    Have you looked into Mutaflor probiotics? It’s a beneficial E. Coli (seriously) that has research showing it can colonize the gut and clinically improve e.g. IBS symptoms. I’ve personally seen it solve (or significantly mitigate) issues for multiple people.
    - sersi 2y ago
      Thanks! I'll take a look at this.
  - xupybd 2y ago
    Have you had the celiac blood test?
Theodores 2y ago
I am not sure what to make about the increasing amount of people with a real or an imagined gluten intolerance. By imagined, I mean someone that has a generally unhealthy diet, for them to not see the doctor, but decide for themselves that wheat is the enemy, rather than the garbage they have in their sandwich, in their burger or on their pizza. Bread is getting a bad name, yet whole civilisations have been founded on it. This bad name is coming along at a time when most of what most people eat is 'processed food' rather than 'real food'. I brought my own bread making 'in house' with a bread making machine and I have not looked back. Not so much as a slice goes in the bin and the machine is on 2-3 times a week. I have no incentive to pay more for bread laced with preservatives that does not taste quite as good. I have just the four ingredients, well, I add a spot of olive oil too, to keep it soft, but you get the idea. I don't add any extract of human hair into it, or any propionic acid as a preservative. There are no 'processing aids' that don't appear on the ingredients list. I hear you regarding restrictive diets, however, I did restrict my diet to cut out all of the processed foods and to always cook from scratch. I buy mostly vegetables and fruit. Those aisles of frozen things or things in bright packaging are of no interest to me. I have just chosen the good stuff, and changed my ideas on what that might be. This was just done on a whim, to see if I could last a whole week without chocolate, sticky toffee puddings, ready made pizza and all those good things. I did not expect to feel so much better in such a short period of time, so I decided to go for a month, which was easy, and, after that, the pattern was set. I had always considered a certain amount of bloating, poorly formed movements and the rest of it as normal. Oh, how wrong I was! I have not had the slightest problem since my 'nutrition experiment' started and a fully working digestive tract is such a pleasant life upgrade. It is not something one brags about, 'having perfectly working bowels', but there is no way I would go back to eating processed food garbage. The only downsides are no farts that smell (always odourless is weird), and no time spent doom-scrolling 'on the throne' (visits to the restroom are all too brief to need a book or a phone). In my opinion we have over-complicated the deal with our microbes. We do this to get to a stage where people avoid fibre at all costs or become fearful of bread. From my n of 1 experience, wonderful things happen if eating just real food, as in mostly vegetables. I don't think there is anything wrong with sugar, all I know is that I can live life without it, and prefer having good teeth. It is the same with fats, clearly some are bad, but, from fairly natural sources, all is fine. Palm oil is ubiquitous in processed foods, and there is nothing wrong with it, but I don't have any in my food and see no reason to seek out processed foods that have it. I count the half hour I spend in the kitchen as 'physical activity' and ring-fence that time much like how some people go to the gym. I know it is low intensity and not a 'workout', but, once I get off the sofa and into the kitchen, I enjoy preparing vegetables and cooking. I also enjoy the money saved. My 'superfoods' are things like potato and carrot. The only supplements I take are vitamin B12 and vitamin D. I also get to eat more, which is due to calories. Junk food is calorie rich, and, if you are eating mostly vegetables, then you have to eat to satiety, which needs a bit of stomach training. I don't believe everything can be magically fixed by eating mostly fresh-cooked vegetables. Yeast infections and the like need some prescription medications to resolve, but, once done, there is a new normal of a perfectly working digestive tract, perfect blood pressure, a BMI at the lower end and skin that never gets so much as a pimple. Give a 'restrictive diet' of just real food a go for a week, make some mistakes along the way, and learn what works for you.
itronitron 2y ago
You can get a blood test for indicators of celiac and gluten sensitivity, among other things.
- draven 2y ago
  I got pretty good results with the autoimmune protocol (pain-free plus no more brain fog after 3 months of the elimination phase.) I talked about it to my GP who told me to do an allergy skin test, because blood tests were not 100% reliable.
davzie 2y ago
I also went through this for 6 years. A guy on YouTube will help called Pain Free You. Recent studies suggest bad bacteria can continue to flourish if we are chronically stressed (which symptoms like this easily cause). Huge correlation between stress and flare ups for me. In the short term whilst you work on the mind-body aspect, I recommend taking Digestive Enzymes with each meal along with a Betain HCL + Pepsin supplement. These are the only supplements that removed my symptoms (and trust me I’ve tried them all). They work by ensuring you have the right level of stomach acid to properly digest food, proteins, carbs and fats so that by the time it hits your digestive tract, there’s less undigested FODMAPs for the bacteria to feed off of. There IS a light at the end of the tunnel. Happy to chat about this and what I use since I know this can be hard to go through davzie at davzie dot com.
- anonymous344 2y ago
  Did you fixed yourself with these? Did you try probiotics (90% of them are shit) Did you try fasting ? how about milk-gluten-sugar free diet?
  - davzie 2y ago
    I tried probiotics, tonnes of different types, none of them worked, most made it worse. I tried fasting, a few days eating nothing and drinking only water with a bit of salt. It doesn't really work. The bacteria go into hibernation mode until you start eating again. I don't drink milk anymore and I tried a low FODMAP diet. The latter helped, but I found it so hard to keep up and it was stressful. I had every diagnostic under the sun. Chest xrays, stool samples, hydrogen methane breath tests (hydrogen positive). I am 99% convinced it was all caused by stress and the antibiotics I took was the straw that broke the camels back. Stress triggers flight or fight mode. Chronic stress means you're always in this state which means your body isn't producing the digestive enzymes and stomach acid it needs to maintain correct bacteria levels since you don't need to digest food when you're being chased by a metaphorical tiger, better use that energy to run away instead. The only probiotic I haven't tried that I would like to try is Symprove which is a refrigerated one that was recommended to me by quite a few pharmacists. Once I am fully confident my stress levels are very low and I've learnt to manage them I will start to wean off the supplements and see if I get a recurrence of symptoms. I'm not yet fully cured but most importantly I'm on the right track.
trhway 2y ago
>I'm treated like a paranoiac for merely inquiring about certain possibilities like so-called SIBO Yes, as my GE dismissively smiling told me "we all would like to chug burgers like we did in our youth, wouldn't we?". So talking and describing in details doesn't help much. What helps is if you're on PPO or similar insurance, so the doctor is easy to order tests, whatever you like from like the 20-items list - CAT, genetics, ... . The tests are the key. For SIBO you may get the hydrogen breath test - it is a very simple one - and watch the numbers that the nurse will record from the machine - it will help you understand the situation better. And just like with many other GE issues, getting diagnosed is just half of the journey though. Second is getting it to treat which is again can be a long one (there is a lot of recommendations in this thread - i've tried many of them and they do improve the situation somewhat, nothing though completely solves it for me. I though found some regimen for me which so far made it almost gone. Like many describe - observe and act accordingly.) Btw, just to illustrate the complexity/interdependencies - kind of like in large enterprise software - one of the side effects of SIBO i've got is anemia, discovered accidentally by looking at blood tests results done for something else (again looking into specific numbers yourself seems to be the key as the doctors said nothing) - as SIBO impedes B12 intake, and with B12 and iron supplements i've got my physical abilities back which at the time strangely went down when i started to get tired and running out of breath somewhat quickly for no apparent reason.

vasco 2y ago

You need to prove your knowledge to doctors contextually, and even then it's much easier if they are not actively giving you a consultation. Doctors don't respond well to randomly dropping theories on them. If you respond to something by dropping an inappropriate paper for the illness or ask about rare issues when common ones would fit they'll stop listening. Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". It's rare to have someone capable, who isn't going to jump to conclusions and just complicate everything, so I get why they discard most of what people tell them.

n8henrie 2y ago
This is about the most charitable thing I've ever read on this site about physicians. As a physician with a degree in nutrition, I find most HN threads about medicine, nutrition, or the health system very frustrating, and in spite of it being the only area in which I'm formally qualified to opine, it's also where I've earned most of my downvotes (which prior to 500 internet points kind of mattered). I eventually learned to just bite my tongue here. Curiously, I think my "hacker spirit" is what drove me to medicine. In undergrad, I was spending 5+ hours per day reading medical literature (mostly nutrition, endocrinology, exercise science) and had decided that doctors were mostly idiots, and eventually decided to change majors from ME to pre-med. In medical school, I was a real handful to many of the lecturers, which I kind of regret now. Ends up it is really easy to publicly humiliate someone when they mis-state or misunderstand a minor detail that you've studied in depth, even if they have far greater expertise in the field. In medical school, residency, and practice (EM), I've learned a lot about why things are the way they are. In my field, many patients are entirely obsessed about some problem and completely lose track of reality when discussing it. It becomes part of their identity. They don't know how to read or evaluate medical literature, and they lack the background knowledge to the extent that even beginning a discussion is onerous. It's like your uncle who is far to one side or the other of the political spectrum and is well read but only in support of his biases -- yes, you might learn something this time, but do you really want to get into long discussion to find out? He already "knows" all the answers to many unstudied questions, and knows why the studies are wrong for the others. There are so many of these patient encounters that it is entirely infeasible to engage with even a small proportion of them and still get your job done, so you learn to nod, smile, and move on to determining whether or not a life-threatening emergency exists or not. You definitely don't have time -- at least in my field -- to really listen and consider all of these. Unfortunately it's not always easy to differentiate symptoms that are possibly psychological, exaggerated, self-limiting, or impractical / impossible to diagnose in my clinical context, from those that present opportunities for me to make a difference even if not a true emergency. I still think that many doctors are idiots that lack critical thinking skills and self-reflection, and unfortunately almost nobody outside of academics reads primarily literature that isn't forced on them (MOC). I've tried to show many friends and colleagues how to set up RSS feeds for pubmed queries for their topics of interest -- zero people have seemed impressed. In contrast, I think much of HN leans heavily on representativeness heuristic and doesn't consider likelihood ratios when evaluating their test results. Anyway, thanks for the considerate comment.
theshrike79 2y ago
I actually had a discussion about this with a very experienced gastroenterologist. They said that doctors love data. Don't come at them with theories or papers. Give them a food diary + symptoms, it helps a LOT more than "I think I have X".
- dekhn 2y ago
  Doctors don't love data: they love a veneer of data on top of a seductive narrative, typically at a conference in Bermuda, after a couple of wine glasses.
  - littlechef 2y ago
    So take them a food diary and a bottle of wine??
Pikamander2 2y ago
The flip side of this is that doctors aren't infallible, and will often struggle with rare diseases that they don't deal with on a daily basis, or in some cases were never even taught about in medical school (such as recent discoveries). It's true that doctors have to deal with a constant flurry of "I did my own research and think this bruise I got yesterday might be liver cancer", but sometimes people with legitimately debilitating illneses slip through the cracks and have to aggressively advocate for themselves to get any real testing done, particularly if they have a very "let's wait a few months and see what happens" type doctor who never seems to make any progress on their own.
- vasco 2y ago
  > but sometimes people with legitimately debilitating illneses slip through the cracks and have to aggressively advocate for themselves to get any real testing done Sometimes they do, but by definition it's likely not you. It's important to think here that everyone thinks "they are the informed one" or that they are the one that "might have the rare one". Same reason why most people have bought a lottery ticket in their lives or why everyone is of above average intelligence. I like being active in my medical treatments by doing my own research but I censor a lot of what I say to a doctor, it's usually more to make sure I understand what's going on and that I can double check things.
  - catlikesshrimp 2y ago
    It is too bad most people don't like all the dull gray truth in your comment. Everybody thinks they are the exception, for good and bad. On top of that, there are medical schools, not just one. A doctor might be following a [compulsory] guideline from his association / state / institution / college.
    - matheusmoreira 2y ago
      > A doctor might be following a [compulsory] guideline from his association / state / institution / college. I have no doubt they are, compulsory or not. When things go wrong, the first thing the judge asks is whether the doctor followed established medical practice, whatever that may be.
hansvm 2y ago
A technique I have a lot of success with is asking why <some observation> doesn't change their opinion. It leaves the doctor in a position of expertise and authority, so they're usually happy to spend the time teaching you. Normally I learn a lot about some gap in my medical knowledge, and sometimes the additional reflection changes the doctor's opinion and gives me better outcomes.
- LorenPechtel 2y ago
  Depends on if their mind is made up. Yeah, I failed the food challenge test because you used the wrong thing! No, you can't use pork in place of ham--the trigger was something that gets added in the process of making it ham.
  - hansvm 2y ago
    Kind of. Even when their mind is made up, they're likely to try to answer (since the framing places them on a pedestal). Both you and the doctor will notice anything obviously wrong with the answer. I've met a few young doctors who would dig in their heels (different from explaining why they're right; if they're actually right and teach me why then I think that was an incredibly valuable opportunity), but you ought to, in most parts of the world, be able to fire them and find somebody actually willing to talk to you. Almost all of the time I meet doctors who handle the framework I set out exceptionally. Your pork/ham comment is interesting. For other toxins/allergens/..., I see doctors very explicitly examining every possible extra ingredient/factor before even deigning to consider that the bulk solid might matter (e.g., most chocolate allergies are actually to soy lecithin or one of the other mixins). I'm surprised anyone would rule out a ham problem just because they tested one kind of pork.
    - LorenPechtel 2y ago
      It's obvious he thought the problem was upstairs. If you're a medical mystery they're going to consider psych and some of them will consider it too much.
m_fayer 2y ago
Why is it too much to ask for doctors to take sufficient interest in their patients to clock just how sophisticated they are, and react accordingly.
matheusmoreira 2y ago
> Doctors don't respond well to randomly dropping theories on them. Because they are liabilities. If he follows along with your theory and you get worse, he doesn't get to claim he was following accepted medical practice. Plenty of smart guys turn into the doctor's worst enemies after things start going wrong. Wanna know what arguments they use in court against doctors who show patients this sort of respect? > I couldn't possibly have known > He is a doctor and I'm just a patient > My judgement was impaired due to my sickness If patients want to start dropping theories on doctors, they should be ready to share in the responsibility for the outcome. Courts have demonstrated that the vast majority of people are not ready to accept that responsibility. > Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". Well said. Many of my patients are illiterate. Imagine how hard it is to obtain informed consent. Combine that with internet diagnosis and it's a shit show. I have people asking me about the benefits of some YouTube charlatan's special himalayan salts on a daily basis. And that's when they're not already using those things and dismissing medicine as a corporate conspiracy to keep them sick and perpeptually consuming drugs. I have no problem with people who googled things, understood those things and who want my professional opinion on the matter. It only becomes a problem for me once they start trying to determine what the treatment is going to be. It's my name, signature and license on the prescription. The only options available to the patient are the ones I'm willing to write on that paper.

dcx 2y ago

Speaking as someone who went through this, running experiments with your diet is absolutely worth trying. It worked for me. There is actually a specific medical practice for this: look up "FODMAP". The idea is to temporarily cut out all likely suspects for a short period, see if that fixes things, and then gradually reintroduce them to identify the culprit. A gastroenterologist recommended this to me. It didn't help with my issues at the time as gluten is not covered by this cluster, but struck me as a very sensible approach. In my experience the medical system is unusually useless and dismissive with digestive issues. I think this is probably related to how little it can do in this area. 10-15% of the US has IBS, and this is a disease of exclusion. That literally means that the medical system acknowledges a cluster of symptoms, but has no idea what is causing them or how to cure them. I can imagine that blaming patients is easier than the alternatives for some doctors.

jim-jim-jim 2y ago
Sorry, I didn't want to turn my original post into an essay, but I've already done low FODMAP and various other restricted diets for diagnostic purposes, without any noticeable shift in symptoms. Only bread and sugar seem to be correlated, and not strongly. To me it's a curious symptom rather than the root of the issue.
- jtc331 2y ago
  Have you looked into Mutaflor probiotics? It’s a beneficial E. Coli (seriously) that has research showing it can colonize the gut and clinically improve e.g. IBS symptoms. I’ve personally seen it solve (or significantly mitigate) issues for multiple people.
  - sersi 2y ago
    Thanks! I'll take a look at this.
- xupybd 2y ago
  Have you had the celiac blood test?

Theodores 2y ago

I am not sure what to make about the increasing amount of people with a real or an imagined gluten intolerance. By imagined, I mean someone that has a generally unhealthy diet, for them to not see the doctor, but decide for themselves that wheat is the enemy, rather than the garbage they have in their sandwich, in their burger or on their pizza. Bread is getting a bad name, yet whole civilisations have been founded on it. This bad name is coming along at a time when most of what most people eat is 'processed food' rather than 'real food'. I brought my own bread making 'in house' with a bread making machine and I have not looked back. Not so much as a slice goes in the bin and the machine is on 2-3 times a week. I have no incentive to pay more for bread laced with preservatives that does not taste quite as good. I have just the four ingredients, well, I add a spot of olive oil too, to keep it soft, but you get the idea. I don't add any extract of human hair into it, or any propionic acid as a preservative. There are no 'processing aids' that don't appear on the ingredients list. I hear you regarding restrictive diets, however, I did restrict my diet to cut out all of the processed foods and to always cook from scratch. I buy mostly vegetables and fruit. Those aisles of frozen things or things in bright packaging are of no interest to me. I have just chosen the good stuff, and changed my ideas on what that might be. This was just done on a whim, to see if I could last a whole week without chocolate, sticky toffee puddings, ready made pizza and all those good things. I did not expect to feel so much better in such a short period of time, so I decided to go for a month, which was easy, and, after that, the pattern was set. I had always considered a certain amount of bloating, poorly formed movements and the rest of it as normal. Oh, how wrong I was! I have not had the slightest problem since my 'nutrition experiment' started and a fully working digestive tract is such a pleasant life upgrade. It is not something one brags about, 'having perfectly working bowels', but there is no way I would go back to eating processed food garbage. The only downsides are no farts that smell (always odourless is weird), and no time spent doom-scrolling 'on the throne' (visits to the restroom are all too brief to need a book or a phone). In my opinion we have over-complicated the deal with our microbes. We do this to get to a stage where people avoid fibre at all costs or become fearful of bread. From my n of 1 experience, wonderful things happen if eating just real food, as in mostly vegetables. I don't think there is anything wrong with sugar, all I know is that I can live life without it, and prefer having good teeth. It is the same with fats, clearly some are bad, but, from fairly natural sources, all is fine. Palm oil is ubiquitous in processed foods, and there is nothing wrong with it, but I don't have any in my food and see no reason to seek out processed foods that have it. I count the half hour I spend in the kitchen as 'physical activity' and ring-fence that time much like how some people go to the gym. I know it is low intensity and not a 'workout', but, once I get off the sofa and into the kitchen, I enjoy preparing vegetables and cooking. I also enjoy the money saved. My 'superfoods' are things like potato and carrot. The only supplements I take are vitamin B12 and vitamin D. I also get to eat more, which is due to calories. Junk food is calorie rich, and, if you are eating mostly vegetables, then you have to eat to satiety, which needs a bit of stomach training. I don't believe everything can be magically fixed by eating mostly fresh-cooked vegetables. Yeast infections and the like need some prescription medications to resolve, but, once done, there is a new normal of a perfectly working digestive tract, perfect blood pressure, a BMI at the lower end and skin that never gets so much as a pimple. Give a 'restrictive diet' of just real food a go for a week, make some mistakes along the way, and learn what works for you.

itronitron 2y ago

You can get a blood test for indicators of celiac and gluten sensitivity, among other things.

draven 2y ago
I got pretty good results with the autoimmune protocol (pain-free plus no more brain fog after 3 months of the elimination phase.) I talked about it to my GP who told me to do an allergy skin test, because blood tests were not 100% reliable.

davzie 2y ago

I also went through this for 6 years. A guy on YouTube will help called Pain Free You. Recent studies suggest bad bacteria can continue to flourish if we are chronically stressed (which symptoms like this easily cause). Huge correlation between stress and flare ups for me. In the short term whilst you work on the mind-body aspect, I recommend taking Digestive Enzymes with each meal along with a Betain HCL + Pepsin supplement. These are the only supplements that removed my symptoms (and trust me I’ve tried them all). They work by ensuring you have the right level of stomach acid to properly digest food, proteins, carbs and fats so that by the time it hits your digestive tract, there’s less undigested FODMAPs for the bacteria to feed off of. There IS a light at the end of the tunnel. Happy to chat about this and what I use since I know this can be hard to go through davzie at davzie dot com.

anonymous344 2y ago
Did you fixed yourself with these? Did you try probiotics (90% of them are shit) Did you try fasting ? how about milk-gluten-sugar free diet?
- davzie 2y ago
  I tried probiotics, tonnes of different types, none of them worked, most made it worse. I tried fasting, a few days eating nothing and drinking only water with a bit of salt. It doesn't really work. The bacteria go into hibernation mode until you start eating again. I don't drink milk anymore and I tried a low FODMAP diet. The latter helped, but I found it so hard to keep up and it was stressful. I had every diagnostic under the sun. Chest xrays, stool samples, hydrogen methane breath tests (hydrogen positive). I am 99% convinced it was all caused by stress and the antibiotics I took was the straw that broke the camels back. Stress triggers flight or fight mode. Chronic stress means you're always in this state which means your body isn't producing the digestive enzymes and stomach acid it needs to maintain correct bacteria levels since you don't need to digest food when you're being chased by a metaphorical tiger, better use that energy to run away instead. The only probiotic I haven't tried that I would like to try is Symprove which is a refrigerated one that was recommended to me by quite a few pharmacists. Once I am fully confident my stress levels are very low and I've learnt to manage them I will start to wean off the supplements and see if I get a recurrence of symptoms. I'm not yet fully cured but most importantly I'm on the right track.

trhway 2y ago

>I'm treated like a paranoiac for merely inquiring about certain possibilities like so-called SIBO Yes, as my GE dismissively smiling told me "we all would like to chug burgers like we did in our youth, wouldn't we?". So talking and describing in details doesn't help much. What helps is if you're on PPO or similar insurance, so the doctor is easy to order tests, whatever you like from like the 20-items list - CAT, genetics, ... . The tests are the key. For SIBO you may get the hydrogen breath test - it is a very simple one - and watch the numbers that the nurse will record from the machine - it will help you understand the situation better. And just like with many other GE issues, getting diagnosed is just half of the journey though. Second is getting it to treat which is again can be a long one (there is a lot of recommendations in this thread - i've tried many of them and they do improve the situation somewhat, nothing though completely solves it for me. I though found some regimen for me which so far made it almost gone. Like many describe - observe and act accordingly.) Btw, just to illustrate the complexity/interdependencies - kind of like in large enterprise software - one of the side effects of SIBO i've got is anemia, discovered accidentally by looking at blood tests results done for something else (again looking into specific numbers yourself seems to be the key as the doctors said nothing) - as SIBO impedes B12 intake, and with B12 and iron supplements i've got my physical abilities back which at the time strangely went down when i started to get tired and running out of breath somewhat quickly for no apparent reason.