Oh wow, I have the first half of this situation. I went through a period where my digestion was so bad that it was affecting my ability to function from day to day. I didn't get anything useful from my gastro; I even had a negative celiac antibody test. Eventually I started rigorously tracking everything I ate against my symptoms, and after a few months I was able to draw a strong correlation with gluten intake. From memory it was in the 0.7 range. The day I cut out gluten, a set of awful digestive symptoms completely left my life. They return any time I am glutened.
I was fortunate that over time I managed to return myself to full capacity, through reading a ton of research and running dozens of experiments like the above. But it was so damn hard. The symptoms reduced my ability to use my brain to fix myself. And if you're not a careful eater, it's not at all intuitive which foods contain gluten. This was also almost a decade ago while living in a developing country, so it wasn't even apparent that gluten might be a suspect.
I'm currently based in the US - does anyone know how one might get properly tested for chronic giardiasis, as a person who isn't themselves in microbiology? I almost certainly encountered poorly treated water in that period of my life.
Also - I can't help but suspect that a nontrivial percentage of the developing world is living below their full capacity due to something like this. Neglected tropical diseases are a horrendous category.
For testing: As the article says, find a doctor that has experience with it and ask for an antigen test.
The below capacity thing can be very real, supposedly a different parasite in the us is responsible for people in southern us having the stereotype of lazy. In that case it could infect you through your feet from tainted soil. https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-so...
Thanks, I'm certainly going to try that. I was more asking if anyone has experience getting tests done properly in light of their low accuracy. From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate. As a commenter on this post shared, managing the health system is challenging in this area. I just did a bit of googling, and found a couple of leads here:
> CDC recommends collecting three stool samples from patients over several days for accurate test results. Commercial testing products for diagnosing giardiasis are available in the United States. [1]
Perhaps running three tests is the standard of care, or if not one might advocate for this based on the CDC recommendation. And if dismissed, perhaps there are commercial products available at the consumer level.
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.
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.
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.
> 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.
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".
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.
Which brand did you end up using for the enzymes and supplement? It's my understanding that there's sometimes significant differences between brands because it's unregulated so I'm curious about the ones that did work for you.
I've been diagnosed with IBS for 10 years but that's hardly any help, I did notice that reducing fat and reducing wheat seems to help with my symptoms. I've tried a lot of different probiotics but they've been no help so far
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.
Thank you. I'm also on this road. Stress, and inflammation in the body. What helped me was extra hemp-protein powder, forest-berries (=prebiotic) and keeping away from milk, gluten, oat, sugar, alcohol, CITRIC-ACID (this is everywhere! and if you google it, you find that it is causing brain fog like hangover)
And quite a lot of C-vitamin. keeping down the inflammation with tea made from ginger, tumeric and other herbs. Now found out that it can be leaky-gut, and started taking slippery-elm to protect+fix the gut lining. _Should_ also chew the food slowly, but that's not possible usually
Congratulations on finding stuff that's worked for you! I recognise a lot of similar things that I've tried to cut out or introduce. The body can heal, it's great at that, I think doing all this stuff can help give it the space to do so. I used to think alcohol helped (Gin) and was "killing" the bad bacteria off. But I actually think it just chilled me the fuck out for an evening. Good luck on your journey, we're going to make it! :D
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.
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.
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.
> Bread is getting a bad name, yet whole civilisations have been founded on it.
However, modern supermarket bread is quite different to what people were eating even 100 years ago. We've selected for wheat with very high gluten levels as it makes for fluffier bread and we've started adding wheat to almost everything as it's cheap. It's very frustrating to go to a shop and see that products that traditionally don't have any wheat in them, now have wheat added to improve shelf life etc. Things like tortillas, onion bhajis, potato fries (or chips as we call them in the UK) etc.
Edit: Had a quick look to see if there's figures for gluten content over time and it looks like I've got the wrong impression from somewhere. This study shows that gluten content has remained relatively static: https://www.sciencedaily.com/releases/2020/08/200811120112.h...
That's one advantage to being gluten sensitive - I don't bother buying those kinds of things now and generally just cook from simpler ingredients.
It is annoying to go out to a fancy restaurant and find that they use wheat based tortillas rather than authentic corn - you'd expect them to be making things themselves rather than just buying them from a shop.
Just thought of another one - Thai-style fishcakes (e.g. in restaurants). Why are they covered in breadcrumbs when Thai food hardly ever uses wheat?
Your diet advice is great for people who don't have a food intolerance. I'm glad it worked well for you. As someone who has pretty serious - immediate diarrhoea, stomach pain etc - responses to certain foods (dairy, gluten, some alcohol sugars) cooking whole foods from scratch and supplementing with vitamins doesn't cut it. Lots of other people are in the same position. There's a lot of research about why these issues are growing - newer pesticide resistant crops seem one likely avenue - but they're real, and deeply disruptive for the people who have them.
Speaking for myself, I grew up in a home where all our meals were cooked from scratch, no fast food or 'candy', and was horrendously sick growing up due to the amount of (whole wheat, locally baked) bread and dairy in my diet. Had ulcers in my early teens, constant stomach upsets, and lots of secondary related issues.
Certainly eating poorly makes these issues worse, but I didn't grow up in a food desert, or eating an American diet, and they emerged none the less. And at a time (I'm 44) when there was zero awareness of them in the culture.
I was exposed to tonnes of antibiotics as a child - but its hard to deduce cause and effect here. The antibiotics were given because I had frequent gastric distress. Either way, I'm sure my gut bacteria are in a terrible state.
This is good general advice, but for as long as I've been an independent adult, I've cooked three fresh meals a day. Even with breakfast I usually do fish and rice instead of something quicker and easier.
Like the individual in the OP story, I'm more inclined to suspect a specific undetected infection rather than a lack of dietary discipline. I just don't know how to explore this without having my sanity questioned.
> 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'.
There's bread and then there is Bread. I can't tolerate "industrial" bread, the kind that stays soft and tender and doesn't get mouldy. It's something to do with the leavening agents they use (yeast or something other).
Basic Scandinavian Rye bread[0] works. Same with the COVID-popularised sourdough. Oat breads are good too.
But if I eat any of the delicious super-soft wheat breads or toasts... Whooo boy, I blow up like a balloon. Don't have celiacs, gluten intolerance or anything like that. For some reason my gut flora can't take some cereals.
There are some anecdotal stories of Americans coming to Europe and suddenly being able to eat bread with no symptoms.
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.
Anecdotal, but this (likely) happened to me. For a year, my body could not digest gluten. My doctors tested me for celiac antibodies and all tests came back negative.
A gastroenterologist asked if I had taken anti-biotics at any point. I had: 12 months prior I had gone swimming near a landfill, gotten sick, and my primary care doctor had prescribed antibiotics (suspecting giardia). This final GI doctor asked if I had taken probiotics after my regimen of antibiotics. I had not. He ordered a colonoscopy (I think the prep process for that itself – a hard reset – may have done something therapeutic) and I was prescribed probiotics (viz: over-the-counter refrigerated Natren Megadophilus pills, refrigerated MegaFood MegaFlora pills, and refrigerated Bio-K Plus drinks). After the scope prep, scope, and two weeks of probiotics, I could eat gluten again.
I've shared this story with others but wish I had more evidence so that it might have been written up in a way that helped others like Anders. It was frustrating that none of the many providers I saw during that year tied the giardia incident (in my chart) to gluten intolerance (some instead made mild allusions to psychosomatic IBS) until the final gastroenterologist (my hero! I am forever grateful) but I can't complain. Ever since that difficult year, I have tremendous empathy for those with allergies and intolerances, especially for those with celiac.
They did this to me once after finding an allergy test was inconclusive. After about 9 months of being ill and having nutritional issues I was back to where I was again with the same problem
This turned out to be lactose so I just avoid it and all is good now. Could have been a new finding but I suspect the problem was just poorly identified to start with.
So this is actually shockingly similar to something that happened to me. I did a lot of back country travel with sketchy water and developed something close to dairy intolerant for more than 10 years to the point I wasn't sure if I had always had it. Eventually I got lucky on a test (for E. Coli not giardia) and the treatment was to go to nuclear on my intestines. That week wasn't fun. Now i can eat ice cream and dairy with out trouble. I'm not convinced that test was related to the 10 years of symptoms, but the hard reset on the gut definitely worked.
> Dr. Leo Galland, a doctor of internal medicine, describes people like Anders Johnson as having a non-celiac gluten intolerance from chronic giardiasis.
I would describe Anders Johnson (probably a PhD by now) as a responsible and smart young man. It's your body, you must take care of it.
> But doctors never definitively diagnosed Johnson with celiac disease. His doctors wanted to do a biopsy to get a definite answer, but that would require eating gluten again, something Johnson wasn’t willing to chance.
How about this for an app idea? Does this already exist?
Use the app to record all the food consumed. Use AI to read restaurant menus, cereal boxes, ect. Give the user a survey every 1 hour. Make eating A/B testing strategies, for example, have the user not eat dairy for a day, then not eat gluten, ect.. Do some calculations and figure out what foods cause what symptoms.
I've had this web app about 15-20 years ago, until the tech got obselete.
It was popular, yet little bit more simpler
Now I saw that somebody made similiar app...but without proper execution..
If you make one, please don't focus on automating photo taking and that stuff, but the simple ui + simple results
>> the person has symptoms provoked by gluten, but they don’t have evidence of celiac disease
Sigh, it would be useful to know what specific tests for celiac were performed that came back inconclusive or even just stating what doctors consider to be definitive evidence of celiac disease.
Wild. So how exactly did cutting gluten out of his diet mask his symptoms that effectively? Does gluten somehow feed/provoke the giardia? Or were the dietary changes mostly irrelevant?
That's interesting—I know that NCGS is somewhat controversial and its causes aren't totally understood, so this makes me wonder how many people with NCGS have some other, undiagnosed underlying condition that the gluten's aggravating.
actually... our civilised country don't have these infections if you are not an traveller to poor country. so the doctors don't know anything, no medicine available or even accepted to sell. Only few doctors in whole country who has diagnosed these
I have this, how to kill it? I can't go to doctor, because they are all so difficult in my country when it comes to things like this.
Does ivermectin help?
Oh wow, I have the first half of this situation. I went through a period where my digestion was so bad that it was affecting my ability to function from day to day. I didn't get anything useful from my gastro; I even had a negative celiac antibody test. Eventually I started rigorously tracking everything I ate against my symptoms, and after a few months I was able to draw a strong correlation with gluten intake. From memory it was in the 0.7 range. The day I cut out gluten, a set of awful digestive symptoms completely left my life. They return any time I am glutened.
I was fortunate that over time I managed to return myself to full capacity, through reading a ton of research and running dozens of experiments like the above. But it was so damn hard. The symptoms reduced my ability to use my brain to fix myself. And if you're not a careful eater, it's not at all intuitive which foods contain gluten. This was also almost a decade ago while living in a developing country, so it wasn't even apparent that gluten might be a suspect.
I'm currently based in the US - does anyone know how one might get properly tested for chronic giardiasis, as a person who isn't themselves in microbiology? I almost certainly encountered poorly treated water in that period of my life.
Also - I can't help but suspect that a nontrivial percentage of the developing world is living below their full capacity due to something like this. Neglected tropical diseases are a horrendous category.
For testing: As the article says, find a doctor that has experience with it and ask for an antigen test. The below capacity thing can be very real, supposedly a different parasite in the us is responsible for people in southern us having the stereotype of lazy. In that case it could infect you through your feet from tainted soil. https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-so...
Thanks, I'm certainly going to try that. I was more asking if anyone has experience getting tests done properly in light of their low accuracy. From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate. As a commenter on this post shared, managing the health system is challenging in this area. I just did a bit of googling, and found a couple of leads here:
> CDC recommends collecting three stool samples from patients over several days for accurate test results. Commercial testing products for diagnosing giardiasis are available in the United States. [1]
Perhaps running three tests is the standard of care, or if not one might advocate for this based on the CDC recommendation. And if dismissed, perhaps there are commercial products available at the consumer level.
[1] https://www.cdc.gov/giardia/hcp/diagnosis-testing/index.html
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.
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.
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.
> 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.
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".
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.
Which brand did you end up using for the enzymes and supplement? It's my understanding that there's sometimes significant differences between brands because it's unregulated so I'm curious about the ones that did work for you.
I've been diagnosed with IBS for 10 years but that's hardly any help, I did notice that reducing fat and reducing wheat seems to help with my symptoms. I've tried a lot of different probiotics but they've been no help so far
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?
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.
Thank you. I'm also on this road. Stress, and inflammation in the body. What helped me was extra hemp-protein powder, forest-berries (=prebiotic) and keeping away from milk, gluten, oat, sugar, alcohol, CITRIC-ACID (this is everywhere! and if you google it, you find that it is causing brain fog like hangover) And quite a lot of C-vitamin. keeping down the inflammation with tea made from ginger, tumeric and other herbs. Now found out that it can be leaky-gut, and started taking slippery-elm to protect+fix the gut lining. _Should_ also chew the food slowly, but that's not possible usually
Congratulations on finding stuff that's worked for you! I recognise a lot of similar things that I've tried to cut out or introduce. The body can heal, it's great at that, I think doing all this stuff can help give it the space to do so. I used to think alcohol helped (Gin) and was "killing" the bad bacteria off. But I actually think it just chilled me the fuck out for an evening. Good luck on your journey, we're going to make it! :D
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.
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.
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.
> Bread is getting a bad name, yet whole civilisations have been founded on it.
However, modern supermarket bread is quite different to what people were eating even 100 years ago. We've selected for wheat with very high gluten levels as it makes for fluffier bread and we've started adding wheat to almost everything as it's cheap. It's very frustrating to go to a shop and see that products that traditionally don't have any wheat in them, now have wheat added to improve shelf life etc. Things like tortillas, onion bhajis, potato fries (or chips as we call them in the UK) etc.
Edit: Had a quick look to see if there's figures for gluten content over time and it looks like I've got the wrong impression from somewhere. This study shows that gluten content has remained relatively static: https://www.sciencedaily.com/releases/2020/08/200811120112.h...
> onion bhajis, potato fries
These kind of foods should be home made. Wheat is lesser issue with them.
Even simpler foods like garlic-paste, if bought ready-made in store it contains lot's of unnecessary ingredients.
People buy junk food (pre-made meal) and blame wheat.
That's one advantage to being gluten sensitive - I don't bother buying those kinds of things now and generally just cook from simpler ingredients.
It is annoying to go out to a fancy restaurant and find that they use wheat based tortillas rather than authentic corn - you'd expect them to be making things themselves rather than just buying them from a shop.
Just thought of another one - Thai-style fishcakes (e.g. in restaurants). Why are they covered in breadcrumbs when Thai food hardly ever uses wheat?
Your diet advice is great for people who don't have a food intolerance. I'm glad it worked well for you. As someone who has pretty serious - immediate diarrhoea, stomach pain etc - responses to certain foods (dairy, gluten, some alcohol sugars) cooking whole foods from scratch and supplementing with vitamins doesn't cut it. Lots of other people are in the same position. There's a lot of research about why these issues are growing - newer pesticide resistant crops seem one likely avenue - but they're real, and deeply disruptive for the people who have them.
Speaking for myself, I grew up in a home where all our meals were cooked from scratch, no fast food or 'candy', and was horrendously sick growing up due to the amount of (whole wheat, locally baked) bread and dairy in my diet. Had ulcers in my early teens, constant stomach upsets, and lots of secondary related issues.
Certainly eating poorly makes these issues worse, but I didn't grow up in a food desert, or eating an American diet, and they emerged none the less. And at a time (I'm 44) when there was zero awareness of them in the culture.
I was exposed to tonnes of antibiotics as a child - but its hard to deduce cause and effect here. The antibiotics were given because I had frequent gastric distress. Either way, I'm sure my gut bacteria are in a terrible state.
This is good general advice, but for as long as I've been an independent adult, I've cooked three fresh meals a day. Even with breakfast I usually do fish and rice instead of something quicker and easier.
Like the individual in the OP story, I'm more inclined to suspect a specific undetected infection rather than a lack of dietary discipline. I just don't know how to explore this without having my sanity questioned.
> 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'.
There's bread and then there is Bread. I can't tolerate "industrial" bread, the kind that stays soft and tender and doesn't get mouldy. It's something to do with the leavening agents they use (yeast or something other).
Basic Scandinavian Rye bread[0] works. Same with the COVID-popularised sourdough. Oat breads are good too.
But if I eat any of the delicious super-soft wheat breads or toasts... Whooo boy, I blow up like a balloon. Don't have celiacs, gluten intolerance or anything like that. For some reason my gut flora can't take some cereals.
There are some anecdotal stories of Americans coming to Europe and suddenly being able to eat bread with no symptoms.
[0] https://en.wikipedia.org/wiki/Ruisleipä
> Bread is getting a bad name, yet whole civilisations have been founded on it.
The idea cereals are bad for health is at least 2 millenia old: https://www.persee.fr/doc/etchi_0755-5857_1983_num_1_1_993
You can get a blood test for indicators of celiac and gluten sensitivity, among other things.
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.
Anecdotal, but this (likely) happened to me. For a year, my body could not digest gluten. My doctors tested me for celiac antibodies and all tests came back negative.
A gastroenterologist asked if I had taken anti-biotics at any point. I had: 12 months prior I had gone swimming near a landfill, gotten sick, and my primary care doctor had prescribed antibiotics (suspecting giardia). This final GI doctor asked if I had taken probiotics after my regimen of antibiotics. I had not. He ordered a colonoscopy (I think the prep process for that itself – a hard reset – may have done something therapeutic) and I was prescribed probiotics (viz: over-the-counter refrigerated Natren Megadophilus pills, refrigerated MegaFood MegaFlora pills, and refrigerated Bio-K Plus drinks). After the scope prep, scope, and two weeks of probiotics, I could eat gluten again.
I've shared this story with others but wish I had more evidence so that it might have been written up in a way that helped others like Anders. It was frustrating that none of the many providers I saw during that year tied the giardia incident (in my chart) to gluten intolerance (some instead made mild allusions to psychosomatic IBS) until the final gastroenterologist (my hero! I am forever grateful) but I can't complain. Ever since that difficult year, I have tremendous empathy for those with allergies and intolerances, especially for those with celiac.
> Instead, the doctor prescribed him a cocktail of antibiotics, antifungals, and antiprotozoal medications.
> “If my intestines were a warzone, we went full nuclear,” Johnson remarked
Is that giardiasis treatment, or just let's kill everything and hope for the best? Glad it worked out for him.
> Is that giardiasis treatment, or just let's kill everything and hope for the best? Glad it worked out for him.
The second one.
They did this to me once after finding an allergy test was inconclusive. After about 9 months of being ill and having nutritional issues I was back to where I was again with the same problem
This turned out to be lactose so I just avoid it and all is good now. Could have been a new finding but I suspect the problem was just poorly identified to start with.
Totally useless.
So this is actually shockingly similar to something that happened to me. I did a lot of back country travel with sketchy water and developed something close to dairy intolerant for more than 10 years to the point I wasn't sure if I had always had it. Eventually I got lucky on a test (for E. Coli not giardia) and the treatment was to go to nuclear on my intestines. That week wasn't fun. Now i can eat ice cream and dairy with out trouble. I'm not convinced that test was related to the 10 years of symptoms, but the hard reset on the gut definitely worked.
> Dr. Leo Galland, a doctor of internal medicine, describes people like Anders Johnson as having a non-celiac gluten intolerance from chronic giardiasis.
I would describe Anders Johnson (probably a PhD by now) as a responsible and smart young man. It's your body, you must take care of it.
> But doctors never definitively diagnosed Johnson with celiac disease. His doctors wanted to do a biopsy to get a definite answer, but that would require eating gluten again, something Johnson wasn’t willing to chance.
How about this for an app idea? Does this already exist?
Use the app to record all the food consumed. Use AI to read restaurant menus, cereal boxes, ect. Give the user a survey every 1 hour. Make eating A/B testing strategies, for example, have the user not eat dairy for a day, then not eat gluten, ect.. Do some calculations and figure out what foods cause what symptoms.
I've had this web app about 15-20 years ago, until the tech got obselete. It was popular, yet little bit more simpler Now I saw that somebody made similiar app...but without proper execution.. If you make one, please don't focus on automating photo taking and that stuff, but the simple ui + simple results
>> the person has symptoms provoked by gluten, but they don’t have evidence of celiac disease
Sigh, it would be useful to know what specific tests for celiac were performed that came back inconclusive or even just stating what doctors consider to be definitive evidence of celiac disease.
Wild. So how exactly did cutting gluten out of his diet mask his symptoms that effectively? Does gluten somehow feed/provoke the giardia? Or were the dietary changes mostly irrelevant?
This isn’t an uncommon presentation - disease processes that lead to inflammation of the small bowel can be expected to resemble gluten sensitivity.
Gluten consumption, on its own, can cause small bowel inflammation and this effect is well known (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5677194/)
That's interesting—I know that NCGS is somewhat controversial and its causes aren't totally understood, so this makes me wonder how many people with NCGS have some other, undiagnosed underlying condition that the gluten's aggravating.
I love the quote at the end :)
Yes
People in developed countries have very little knowledge of parasitic diseases (ok, maybe only of tick-bourne diseases)
You wouldn't need Dr House to diagnose tape worm in a lot of less developed countries.
actually... our civilised country don't have these infections if you are not an traveller to poor country. so the doctors don't know anything, no medicine available or even accepted to sell. Only few doctors in whole country who has diagnosed these
I have this, how to kill it? I can't go to doctor, because they are all so difficult in my country when it comes to things like this. Does ivermectin help?