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.
Note you can also check your genetic config.log to see if there was a -DALLOW_CELIAC flag in your source build.
Unfortunately your body's settings dialog is shit and does not show you whether or not that feature is set to on or off. But if you were built without that flag then you lack the code for the Celiac algorithm altogether and are good to go. (There may be other sensitivities to gluten, but at least nothing that corrupts your nutrient slurping event loop.)
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.
Where I live, microbiologists work the diagnosis by examining stool through a microscope. Nowadays, though, doctors are lazy and just prescribe antiparasitaries without a diagnosis.
I was taught to suspect worms only in children and immunicompromised adults. And I never found the exception.
Depends on where you live. Parasites are utterly endemic in areas as close as a 30 minutes drive away from me. They are commonly found in patients of all ages, including otherwise normal functioning adults.
Depending on the epidemiology, testing a population is a waste of time and money. They have a very high chance of having the disease and a very high chance of reinfection even after treatment. So what happens is those patients come in every once in a while and they straight up ask for their periodic albendazole dose. And then they go back to their homes and they drink the exact same water and eat the exact same food.
For instance, a rapid covid test might have low sensitivity but high specificity. Meaning if it’s negative, you could still have the disease. But if it’s positive, you’re almost certainly sick. Ie the false negative rate is a lot higher than the false positive rate.
Technically a "rapid covid test" only detects the presence of certain viral genetic material. This usually means the patient is or recently was infected with SARS-CoV-2 (the virus) but it doesn't indicate anything about whether the patient has COVID-19 (the disease). Many infections are asymptomatic and thus not medically classified as a disease state.
This distinction might seem pedantic but it's important to be precise when discussing medical issues.
If you want to be precise… There are different types of “rapid COVID test”, the most popular of which detect antigens, not ‘viral genetic material’. PCR tests detect genetic material. Both tests seem to have differing levels of sensitivity to each variant of the virus.
I have a positive antigen test for celiac disease (I had 2 elevated antigens actually, both associated with celiac disease). The gastroenterologist told me I have celiac disease. Yet I've never experienced symptoms.
I stopped eating gluten and the associated antigens went down to normal levels. I don't feel any better or worse though.
The literature says there are false positives, and I've always wondered if might be one of them. I've searched celiac forums and I've never encountered anyone with a false positives diagnosis. Lots of false negatives or non-celiac gluten sensitivities though.
I do have the gene required for celiac disease, but most who have this gene do not have celiac disease.
... Take it from someone with celiac. You don't always feel it. I didn't for decades.
But it caught up with me. Really badly. And when I say badly, it nearly killed me. I got hypocalcima, and fuck me if it wasn't the most painful thing I ever endured. I've broken bones, etc. All that shit is child's play to every muscle in your body locking up and your body feeling like it is getting stabbed with needles all over. Thankfully once they give you calcium, it goes down. But... I was probably an hour or two away from dead, from asphyxiation.
I played with fire again, and caught it quicker the next time. But I had no concrete diagnosis. Now, I do.
Oh, as a bonus, I got the bones of an 85 year old woman with osteopenia.
Don't fuck with this shit internet stranger. Please.
Hearing this makes me want to keep on track. But I would like regular blood tests to find out if my nutrition absorption is improving. That would at least motivate me to keep eating this restricted diet.
I can't speak for the US but a friend in the UK was recently diagnosed with giardiasis, not chronic though. As far as I can tell it was simply a routine check because of the symptoms. He didn't give me the impression that it was a difficult diagnosis to obtain. The medics reckoned that it came from a bag of contaminated salad leaves.
Gluten can also trigger certain thyroid conditions, which can wreck havoc everywhere in the body, including the intestines.
IIRC, the problem is that gluten is similar to thyroid tissue, and for some people, the immune system will then attack the thyroid as well as causing trouble in the intestines where the gluten was found.
Here is a thought. If you're having difficulty finding proper testing, just have a doctor prescribe the treatment for giardiasis. After finishing it, you can test whether things are now better for you.
If you're in the US, I'm sure you can convince a doctor to help you. Since the treatment is not life threatening or a narcotic and just a course of antibiotics, you should have no problem.
>> can't help but suspect that a nontrivial percentage of the developing world is living below their full capacity due to related disease burdens, e.g. from this or other neglected tropical diseases.
WHO literally estimated 1 billion living people were infected with hookworm at some point throughout childhood. Once that happens in areas with poor food security to begin with your brain is likely fucked for life from stunted development due to childhood malnutrition.
Diminished capacity due to disease burden is definitely high.
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.
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.
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.
I wish the medical world would not consider a "syndrome" as a diagnosis. No, it's a symptom! Maybe that's all the information you have, but it's not an answer.
As for FODMAP--I've gone that route and gotten a few surprises. The origin of something can matter. The storage can matter.
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.
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".
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.
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.
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.
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.
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.
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.
> 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.
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.
> 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.
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.
I really appreciate your post. I am still on this journey, and have been for almost a decade. It will not break my will. Digestive enzymes are one of the next things that I will be trying -- I noticed that small amounts of pineapple with my evening meal seem to quell some GI distress.
Anyways, I'm at work now, so hopefully my reply will serve as a nice bookmark to come back to this thread.
I'm tired of my doctors and specialists dismissing all of my attempts at curing myself. They are truly only interested in minimizing symptoms, and NONE of them believe there is a root cause to CURE.
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 started out with Solgar brand. I found digestive enzymes with Ox Bile to be best and the Betaine I look for minimum 350mg Betaine HCL and minimum 50mg of Pepsin as that appears important to managing symptoms. Probiotics I found just make me feel worse.
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
Sounds like you've identified that histamine is an issue for you. Vitamin C will clear serum histamine, citric acid is bad since it's a fermented byproduct of black mold (likely triggers histamine release from impurities).
In my IBS journey I had a period where I had very strong histamine intolerance, and vitamin C (in the form of QBC vitamin, quercetin + bromelain + vitamin C) really helped stabilize me. Histamine intolerance often led to chronic insomnia, my heart just would not calm down at night.
thank you and God bless!
I found out about this histamine when drinking wine and after got cramps. But did not find cure for it. B12 which was one aid, normally makes my stomach bad imeadiately. Will try QBC
In my research trying to help myself I've come to the conclusion that histamine intolerance is really more of a symptom of a larger issue. It seems to suggest SIBO or any other sort of inflammatory process in the small intestine. Reason being that dysbiosis (of which SIBO is just one sort) has multiple synergizing effects: not only that often the bacteria associated with dysbiosis will produce lots of histamine through fermentation activity (there's a certain klebsiella type I've seen implicated) but also the dysbiosis causes a cascade of issues that degrades the gut lining which increases the amount of dietary histamine that crosses into the body.
Otherwise I've seen histamine intolerance also suggestive of Crohn's, etc. where the gut lining is chronically damaged.
Like you said wine often reveals it for people, also vinegar, aged cheese, meat or seafood. It's funny that now that I know what to look for I notice when eating with people when they get a stuffy nose right after eating that stuff.
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
Just as a counterpoint to your anecdote, I actually took a course of antibiotics for a week a few months ago and my stomach issues went away completely. Then they came back when I stopped :(
Probiotics didn't help either. Even the refrigerated ones.
Then I started drinking a half cup of unflavoured gelatin before each meal. Take half a tablespoon of the powdered gelatin, mix with half cup water, wait two minutes to dissolve a bit, down the hatch. It's helped like 75% of the way there.
Also, I started taking anxiety meds because my stomach issues get more triggered when I go out and it's early days but that may help.
Rifaximin / Neomycin has big impacts on it however I do believe if you have stress still, not got good stomach acid and / or not dealing with poor gut motility, it will slowly re-surface.
in case it helps, had a similar situation, one antibiotic helped, others didn’t. turns the one that did also had a anti inflammatory effect which seemed to be reducing a then unknown food allergy.
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.
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.
> 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?
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.
Using a dish washer for all of that? I tend to question whether small amounts of dish washer detergent or SLS/etc in toothpaste might change us as environments for our bacteria and replacement bacteria. But that's also a tough area for rigorous scientific study.
This is also a good lead, but I've already chased it. I only use hippie detergent and toothpaste. I do wonder about this while eating out, but hopefully once a week isn't enough to make a difference.
> 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.
>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.
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.
This is entirely anecdotal, and n=1, but I have seen a sailing YouTuber who claimed that she was unable to tolerate gluten in the USA, but once in Europe there was no problem. She assumed that it was related to agri-chem in the USA.
Does anyone know which grain related agricultural products are used in the USA and not in the EU?
My partner has celiac, and has mentioned something like this, but rather than chemicals, it purportedly had to do with heirloom seed strains. europe apparently has more variation among the same crop, and they're also closer to the things our body evolutionary expects since that entire region is much older w/r/t western diet. the USA has basically been hyperoptimizing a monoculture in relative isolation to such a degree that it's kindof its own thing, and some people's bodies don't tolerate it well. now, is this actually supported by a mountain of evidence? I don't know. But at a glance, it at least sounds plausible.
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.
By "go nuclear" I'm assuming you mean antibiotics? That's the standard treatment for methanogen overgrowth now, prescribing oral neomycin which is some really strong stuff but apparently the only thing that seems to wipe out archaea.
Interesting, I have some kind weird dairy intolerance that isn't just lactose intolerance (I have that too), but some kind of sensitivity. When I cut out all dairy my weight jumped 25% in 6 months, and I was no longer underweight or feeling chronically sick. I had cut out lactose heavy dairy years earlier (soft cheeses, milks), but still would have hard cheeses and lactose-free products.
I have no idea what is causing this and my doctors have just shrugged. I have no idea where to even start with this.
In case this is helpful for anyone, two possible gluten intolerance solutions:
A digestive research center changed my life. My gluten-induced symptoms (inflammation, joint pain, diarrhea, etc) is linked to something with my gut bacteria. If I take a certain antibiotic that targets the digestive tract, I can eat anything for 9 months including gluten, without problems. After about 9 months, I can no longer eat gluten. And then about a year after that, I can't eat corn. This has repeated 4 times. I always test negative for celiac and sibo. Side note: The doc told me some patients are cured by antiparasitic meds rather than antibiotic.
The doc is now using wellbutrin to change my brain-gut communication and amazingly it cured my corn intolerance and is improving my reaction to gluten, but not yet to the point where I want to eat it. I have 4 more months to go, so this may improve.
Lastly, I know 2 people whose thyroid issues masquerade as gluten intolerance. Consider a "comprehensive thyroid panel"
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.
“If forty thousand dollars of student loan debt paid for anything, it’s to be able to eat chocolate chip cookies again,” he says.
That's sort of how I felt about my student loan. Doctors who didn't take me seriously as a mostly bedridden homemaker went full nuclear and put me on like 8 or 9 prescription drugs when I told one "I took out a student loan for this summer program. I cannot afford to drop out."
> 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.
Very interesting. At the age of 29 I hiked the Appalachian Trail for 6 months and started having gluten intolerance systems in the months after. I have been since clinically diagnosed with an allergy to barley and rye. For what it’s worth I almost always filtered or treated my drinking water although there were some exceptions. I’m 52 now and still cannot consume barley or rye.
If you're interested in this topic, look up Dr. Kevin Cahill and his work in tropical medicine.
Sadly, situations like these are far more common than people think. My wife studied abroad in India in 2004 and returned with persistent stomach issues. After seeing multiple doctors (gastroenterologists, infectious disease specialists, etc.) and undergoing countless tests (stool samples, endoscopy, colonoscopy), no one could figure out what was wrong. One doctor labeled it IBS (a catch-all diagnosis), and another suggested anti-depressants, citing the side effect of diarrhea to treat her constipation.
Someone recommended she see Dr. Kevin Cahill, who specialized in tropical diseases. He charged $500 in cash and did all the tests himself, including a sigmoidoscopy. Unlike typical practices, he personally examined the samples. After six months of suffering, we got a diagnosis the next day: amoebiasis. With the right medication, she began to improve within weeks.
Dr. Cahill, who passed away in 2022 (https://www.nytimes.com/2022/09/17/nyregion/kevin-m-cahill-d...), had a near-legendary reputation because of his success rate. He was one of the last U.S. doctors to conduct tests and analyze samples himself, a practice that gave him a much higher detection rate for parasitic infections.
Ten years later, we had a similar issue. My wife fell ill again, and despite numerous tests, nothing was found. We went back to Dr. Cahill. Once again, he called the next day with a diagnosis—this time whipworm and giardia. I tested positive too, despite having no symptoms. Dr. Cahill explained that these infections can easily pass between spouses but often don't affect children.
He lamented that modern medicine has drifted away from these hands-on diagnostic practices. In the latest edition of his book, he even published a study showing that major medical institutions only detected parasitic infections in about 50% of known positive samples. The main issue? Sample degradation during transit, disinterested lab technicians, and improper detection methods.
Dr. Cahill was critical of procedures like colonoscopies for detecting protozoa or small helminths. He explained that the bowel-cleansing laxatives used before the procedure wipe out traces of the parasites, leaving the doctor with an inflamed but “clean” view. It’s no surprise that issues return shortly after.
I believe that a significant number of people in developed countries may unknowingly live with parasitic infections, from whipworms to giardia to toxoplasmosis. A single instance of poor hygiene in a restaurant or undercooked food is all it takes. Ironically, poorer countries often have better detection tools due to reliance on old-school methods.
Considering AI's success in areas like breast cancer detection, it seems like there’s a huge untapped potential for AI in diagnosing parasitic infections, especially given the inconsistency and difficulty in manual detection. This is a pervasive issue that cuts across social status, and many infected individuals will never know unless they get lucky with the right doctor.
Very, very interesting--I have always assumed I inherited my mother's issues. Docs have done stool tests, nothing--but as it says they are prone to false negatives. The labs aren't good with the rare stuff. I almost certainly came down with malaria but made the "mistake" of going to the doc my wife worked with. GP, but he did work with DWB and had plenty of clinical experience with malaria. Labs come back a week later--they weren't set up to do the simple swab he ordered and substituted the closest thing they had which wasn't close at all. Came back "negative" so I'm not in the CDC data. The thing is I'm pretty sure of the initial infection point--20+ years earlier. At the time, three rounds of it before I got back to the states and talked to a tropical medicine guy. No symptoms at the time so he wasn't sure what he did would get it all. Never actually lab-diagnosed by the fever pattern is obvious and it responded to chloroquine but I was in an area with some resistance and couldn't take the right drug.
Do you know anybody else who does this sort of thing?
As a brazilian doctor, it's great to see people paying attention to tropical diseases. I gotta admit it's kind of surreal, intestinal worms and Giardia lamblia are an everyday thing here.
I'm wondering if the country he was living in doesn't do an endoscopy + biopsy when checking for celiac?
He should have come back negative on that.
My wife and son have Celiac, and I've been tested that way after an incident 15 years ago a lot like the patient in the article.
At the time the doctors were absolutely saying they wouldn't use a negative blood antibody test to determine a negative diagnosis, they wanted the biopsy.
I got tested for Giardia too. My symptoms started after a hiking/biking trip.
TFA: "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"
Reminds me of a reddit thread I saw years ago where someone mentioned they got malaria or something while traveling and it was treated with IIRC Ciprofloxacin which also cured a bunch of other issues they were having.
The thread was full of people mentioning that random rashes or other ailments that they assumed were just normal to their bodies for years were cured when they took Ciprofloxacin for a different infection.
My mother had a cough of five years that everyone thought was just her allergies. Cured by unrelated antibiotics. (Not that they did anything about the underlying allergies, just took out what she thought was a symptom she had to live with.)
> 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
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.
One confounder with gluten is that every single type of bread except well produced sourdough is high fodmap. And fodmaps can produce a lot of digestive symptoms.
Celiac is more well known than fodmap issues, and you'd have apparent causality. Eat bread, feel bad. Don't eat bread, feel better.
But not perfect, as many other foods are high fodmap.
Anyway it turns out those with giardisis are sensitive to high fodmap foods so perhaps that could explain it. (Surprisingly also sensitive to low fodmap foods)
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
>> 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.
When I was diagnosed back in the mid 00s, the tests were:
- A blood test for elevated levels of tTG-IgA antibodies, which are produced by the celiac autoimmune reaction. This has something like a 5% false negative and 10% false positive rate, so it's generally a strong indicator but doesn't totally confirm the diagnosis.
- An EGD/biopsy of the small intestine. The lining of the small intestine is damaged by anti-tTG antibodies in a way that's recognizable under a microscope.
If you're in an area with excellent health care any GI doctor should be able to explain that the blood test can be conclusive for a positive but not for a negative.
If there is any question they should be doing an endoscopy and taking a biopsy of the small intestine. Celiac disease causes the body to destroy villi and they can see that under the microscope.
Reminds me of the story of how H Pylori was discovered to be the cause of many gastric ulcers by a couple of doctors who, after consistently finding it in ulcer patient cultures, decided to test their theory by deliberately ingesting H Pylori. It gave them ulcers, which they then cured by taking antibiotics.
> No matter how much he ate, he kept losing weight. At one point, he logged his caloric intake for a college nutrition class and found that he had been eating seven thousand calories a day, despite looking sickly thin
Is this even possible? And- only half joking- if it is indeed possible, why isn't there a queue of people waiting to get the parasite installed in their body?
FYI. From article. It is an infection.
Came here hoping for an answer, sadly don't think this is my case. Gluten/Thyroid is pretty hard to nail down..
"Giardia lamblia, occasionally called “beaver fever,” is an easily treatable intestinal parasite, unlike celiac disease. If you’ve been backpacking long enough, you probably know someone who’s gotten it. Giardia is normally an acute infection that causes diarrhea, horrendous gas, and other intestinal malaise, but doctors can corral it easily with antibiotics. The chronic form of giardiasis is lesser known, however. The friend sent Johnson medical studies showing how chronic Giardia infection can cause celiac-like symptoms. "
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?
GPT and Drugs dot com both suggest individually trying these as needed: metronidazole/tinidazole, nitazoxanide, albendazole. I would try them only one at a time, not together. I fear that taking metronidazole and albendazole together might also risk SJS or some such adverse reaction. The doses of each are well known. Rifaximin is also commonly discussed in such circles, but it wasn't mentioned.
Even before these, I would try taking just 3g activated charcoal daily for up to a few days, but away from all medicines. It often (but not always) proves quite beneficial for me.
As for ivermectin, it won't hurt to try it, but we haven't established a connection of it to chronic giardisis.
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.
> I even had a negative celiac antibody test.
Note you can also check your genetic config.log to see if there was a -DALLOW_CELIAC flag in your source build.
Unfortunately your body's settings dialog is shit and does not show you whether or not that feature is set to on or off. But if you were built without that flag then you lack the code for the Celiac algorithm altogether and are good to go. (There may be other sensitivities to gluten, but at least nothing that corrupts your nutrient slurping event loop.)
I just hope that when the time comes for my next version, I’m recompiled with the -ALLOW_GLUTEN_INTAKE flag
Veering offtopic, your phrasing reminds me of the short story that made me discover Cory Doctorow:
https://www.salon.com/2002/08/28/0wnz0red/
(shit, >20 years ago!)
I'd say he wrote that just after reading Snow Crash in about 1998
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
Where I live, microbiologists work the diagnosis by examining stool through a microscope. Nowadays, though, doctors are lazy and just prescribe antiparasitaries without a diagnosis.
I was taught to suspect worms only in children and immunicompromised adults. And I never found the exception.
Odd that you never found what you weren't looking for ...
Depends on where you live. Parasites are utterly endemic in areas as close as a 30 minutes drive away from me. They are commonly found in patients of all ages, including otherwise normal functioning adults.
Depending on the epidemiology, testing a population is a waste of time and money. They have a very high chance of having the disease and a very high chance of reinfection even after treatment. So what happens is those patients come in every once in a while and they straight up ask for their periodic albendazole dose. And then they go back to their homes and they drink the exact same water and eat the exact same food.
> From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate.
“Accuracy” is too vague. You want to find out what the sensitivity and specificity are.
https://ebn.bmj.com/content/23/1/2
For instance, a rapid covid test might have low sensitivity but high specificity. Meaning if it’s negative, you could still have the disease. But if it’s positive, you’re almost certainly sick. Ie the false negative rate is a lot higher than the false positive rate.
Stool tests are questionable to begin with.
Technically a "rapid covid test" only detects the presence of certain viral genetic material. This usually means the patient is or recently was infected with SARS-CoV-2 (the virus) but it doesn't indicate anything about whether the patient has COVID-19 (the disease). Many infections are asymptomatic and thus not medically classified as a disease state.
This distinction might seem pedantic but it's important to be precise when discussing medical issues.
If you want to be precise… There are different types of “rapid COVID test”, the most popular of which detect antigens, not ‘viral genetic material’. PCR tests detect genetic material. Both tests seem to have differing levels of sensitivity to each variant of the virus.
> And if dismissed, perhaps there are commercial products available at the consumer level.
You can walk into Tractor Supply with a $20 bill and walk out with a horse-sized tube of fenbendazole paste and a few bucks in change.
It's true though, southerners aren't as productive as yanks.
I have a positive antigen test for celiac disease (I had 2 elevated antigens actually, both associated with celiac disease). The gastroenterologist told me I have celiac disease. Yet I've never experienced symptoms.
I stopped eating gluten and the associated antigens went down to normal levels. I don't feel any better or worse though.
The literature says there are false positives, and I've always wondered if might be one of them. I've searched celiac forums and I've never encountered anyone with a false positives diagnosis. Lots of false negatives or non-celiac gluten sensitivities though.
I do have the gene required for celiac disease, but most who have this gene do not have celiac disease.
... Take it from someone with celiac. You don't always feel it. I didn't for decades.
But it caught up with me. Really badly. And when I say badly, it nearly killed me. I got hypocalcima, and fuck me if it wasn't the most painful thing I ever endured. I've broken bones, etc. All that shit is child's play to every muscle in your body locking up and your body feeling like it is getting stabbed with needles all over. Thankfully once they give you calcium, it goes down. But... I was probably an hour or two away from dead, from asphyxiation.
I played with fire again, and caught it quicker the next time. But I had no concrete diagnosis. Now, I do.
Oh, as a bonus, I got the bones of an 85 year old woman with osteopenia.
Don't fuck with this shit internet stranger. Please.
Wow, I'm the same. Celiac with very few symptoms.
Hearing this makes me want to keep on track. But I would like regular blood tests to find out if my nutrition absorption is improving. That would at least motivate me to keep eating this restricted diet.
Good to hear your story as a warning.
Then push for them.
For me the motivation is maybe not having to worry about breaking a hip if I fall.
I can't speak for the US but a friend in the UK was recently diagnosed with giardiasis, not chronic though. As far as I can tell it was simply a routine check because of the symptoms. He didn't give me the impression that it was a difficult diagnosis to obtain. The medics reckoned that it came from a bag of contaminated salad leaves.
Surely you just go to your GP, explain your concerns and symptoms and get tested. Here is the UK NHS page on the subject: https://www.nhs.uk/conditions/giardiasis/
Gluten can also trigger certain thyroid conditions, which can wreck havoc everywhere in the body, including the intestines.
IIRC, the problem is that gluten is similar to thyroid tissue, and for some people, the immune system will then attack the thyroid as well as causing trouble in the intestines where the gluten was found.
Here is a thought. If you're having difficulty finding proper testing, just have a doctor prescribe the treatment for giardiasis. After finishing it, you can test whether things are now better for you.
In your experience, are doctors generally willing to do this?
If you're in the US, I'm sure you can convince a doctor to help you. Since the treatment is not life threatening or a narcotic and just a course of antibiotics, you should have no problem.
>> can't help but suspect that a nontrivial percentage of the developing world is living below their full capacity due to related disease burdens, e.g. from this or other neglected tropical diseases.
WHO literally estimated 1 billion living people were infected with hookworm at some point throughout childhood. Once that happens in areas with poor food security to begin with your brain is likely fucked for life from stunted development due to childhood malnutrition.
Diminished capacity due to disease burden is definitely high.
[dead]
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.
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.
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.
Thanks! I'll take a look at this.
Have you had the celiac blood test?
I wish the medical world would not consider a "syndrome" as a diagnosis. No, it's a symptom! Maybe that's all the information you have, but it's not an answer.
As for FODMAP--I've gone that route and gotten a few surprises. The origin of something can matter. The storage can matter.
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.
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".
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.
So take them a food diary and a bottle of wine??
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.
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.
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.
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.
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.
> 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.
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.
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.
> 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.
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.
I really appreciate your post. I am still on this journey, and have been for almost a decade. It will not break my will. Digestive enzymes are one of the next things that I will be trying -- I noticed that small amounts of pineapple with my evening meal seem to quell some GI distress.
Anyways, I'm at work now, so hopefully my reply will serve as a nice bookmark to come back to this thread.
I'm tired of my doctors and specialists dismissing all of my attempts at curing myself. They are truly only interested in minimizing symptoms, and NONE of them believe there is a root cause to CURE.
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 started out with Solgar brand. I found digestive enzymes with Ox Bile to be best and the Betaine I look for minimum 350mg Betaine HCL and minimum 50mg of Pepsin as that appears important to managing symptoms. Probiotics I found just make me feel worse.
See my comment here: https://news.ycombinator.com/item?id=41865429
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
Sounds like you've identified that histamine is an issue for you. Vitamin C will clear serum histamine, citric acid is bad since it's a fermented byproduct of black mold (likely triggers histamine release from impurities).
In my IBS journey I had a period where I had very strong histamine intolerance, and vitamin C (in the form of QBC vitamin, quercetin + bromelain + vitamin C) really helped stabilize me. Histamine intolerance often led to chronic insomnia, my heart just would not calm down at night.
Can confirm I found help in Solgar Quercetin. I’m convinced it’s all stress related though and the stress is causing imbalances in the body.
thank you and God bless! I found out about this histamine when drinking wine and after got cramps. But did not find cure for it. B12 which was one aid, normally makes my stomach bad imeadiately. Will try QBC
Happy to help!
In my research trying to help myself I've come to the conclusion that histamine intolerance is really more of a symptom of a larger issue. It seems to suggest SIBO or any other sort of inflammatory process in the small intestine. Reason being that dysbiosis (of which SIBO is just one sort) has multiple synergizing effects: not only that often the bacteria associated with dysbiosis will produce lots of histamine through fermentation activity (there's a certain klebsiella type I've seen implicated) but also the dysbiosis causes a cascade of issues that degrades the gut lining which increases the amount of dietary histamine that crosses into the body.
Otherwise I've seen histamine intolerance also suggestive of Crohn's, etc. where the gut lining is chronically damaged.
Like you said wine often reveals it for people, also vinegar, aged cheese, meat or seafood. It's funny that now that I know what to look for I notice when eating with people when they get a stuffy nose right after eating that stuff.
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
Just as a counterpoint to your anecdote, I actually took a course of antibiotics for a week a few months ago and my stomach issues went away completely. Then they came back when I stopped :(
Probiotics didn't help either. Even the refrigerated ones.
Then I started drinking a half cup of unflavoured gelatin before each meal. Take half a tablespoon of the powdered gelatin, mix with half cup water, wait two minutes to dissolve a bit, down the hatch. It's helped like 75% of the way there.
Also, I started taking anxiety meds because my stomach issues get more triggered when I go out and it's early days but that may help.
Rifaximin / Neomycin has big impacts on it however I do believe if you have stress still, not got good stomach acid and / or not dealing with poor gut motility, it will slowly re-surface.
in case it helps, had a similar situation, one antibiotic helped, others didn’t. turns the one that did also had a anti inflammatory effect which seemed to be reducing a then unknown food allergy.
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.
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.
> 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?
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.
Using a dish washer for all of that? I tend to question whether small amounts of dish washer detergent or SLS/etc in toothpaste might change us as environments for our bacteria and replacement bacteria. But that's also a tough area for rigorous scientific study.
This is also a good lead, but I've already chased it. I only use hippie detergent and toothpaste. I do wonder about this while eating out, but hopefully once a week isn't enough to make a difference.
> 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
If flour and machine made bread are not processed foods, it's obviously a meaningless bogeyman.
> 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.
>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.
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.
This is entirely anecdotal, and n=1, but I have seen a sailing YouTuber who claimed that she was unable to tolerate gluten in the USA, but once in Europe there was no problem. She assumed that it was related to agri-chem in the USA.
Does anyone know which grain related agricultural products are used in the USA and not in the EU?
My partner has celiac, and has mentioned something like this, but rather than chemicals, it purportedly had to do with heirloom seed strains. europe apparently has more variation among the same crop, and they're also closer to the things our body evolutionary expects since that entire region is much older w/r/t western diet. the USA has basically been hyperoptimizing a monoculture in relative isolation to such a degree that it's kindof its own thing, and some people's bodies don't tolerate it well. now, is this actually supported by a mountain of evidence? I don't know. But at a glance, it at least sounds plausible.
They use less gluten in Europe
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.
By "go nuclear" I'm assuming you mean antibiotics? That's the standard treatment for methanogen overgrowth now, prescribing oral neomycin which is some really strong stuff but apparently the only thing that seems to wipe out archaea.
It was years ago so I don't remember the exact antibiotics, but the side effects were intense.
Interesting, I have some kind weird dairy intolerance that isn't just lactose intolerance (I have that too), but some kind of sensitivity. When I cut out all dairy my weight jumped 25% in 6 months, and I was no longer underweight or feeling chronically sick. I had cut out lactose heavy dairy years earlier (soft cheeses, milks), but still would have hard cheeses and lactose-free products.
I have no idea what is causing this and my doctors have just shrugged. I have no idea where to even start with this.
same - lactose free milk gives me extreme fatigue, has does lactose with lactaid pills.
My wife developed gluten and dairy intolerance quite rapidly a couple years ago. I’m wondering if something like this could be related.
Well, this could be life changing for me.
22 year military career, avid backpacker, have non-celiac gluten sensitivity since the time I was deployed all over SE Asia.
I think I need to have a conversation with my doc! Thanks a TON for posting this!
In case this is helpful for anyone, two possible gluten intolerance solutions:
A digestive research center changed my life. My gluten-induced symptoms (inflammation, joint pain, diarrhea, etc) is linked to something with my gut bacteria. If I take a certain antibiotic that targets the digestive tract, I can eat anything for 9 months including gluten, without problems. After about 9 months, I can no longer eat gluten. And then about a year after that, I can't eat corn. This has repeated 4 times. I always test negative for celiac and sibo. Side note: The doc told me some patients are cured by antiparasitic meds rather than antibiotic.
The doc is now using wellbutrin to change my brain-gut communication and amazingly it cured my corn intolerance and is improving my reaction to gluten, but not yet to the point where I want to eat it. I have 4 more months to go, so this may improve.
Lastly, I know 2 people whose thyroid issues masquerade as gluten intolerance. Consider a "comprehensive thyroid panel"
> 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.
“If forty thousand dollars of student loan debt paid for anything, it’s to be able to eat chocolate chip cookies again,” he says.
That's sort of how I felt about my student loan. Doctors who didn't take me seriously as a mostly bedridden homemaker went full nuclear and put me on like 8 or 9 prescription drugs when I told one "I took out a student loan for this summer program. I cannot afford to drop out."
Was it successful?
I'm not dead, so by some metric, yes.
> 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.
Very interesting. At the age of 29 I hiked the Appalachian Trail for 6 months and started having gluten intolerance systems in the months after. I have been since clinically diagnosed with an allergy to barley and rye. For what it’s worth I almost always filtered or treated my drinking water although there were some exceptions. I’m 52 now and still cannot consume barley or rye.
If you're interested in this topic, look up Dr. Kevin Cahill and his work in tropical medicine.
Sadly, situations like these are far more common than people think. My wife studied abroad in India in 2004 and returned with persistent stomach issues. After seeing multiple doctors (gastroenterologists, infectious disease specialists, etc.) and undergoing countless tests (stool samples, endoscopy, colonoscopy), no one could figure out what was wrong. One doctor labeled it IBS (a catch-all diagnosis), and another suggested anti-depressants, citing the side effect of diarrhea to treat her constipation.
Someone recommended she see Dr. Kevin Cahill, who specialized in tropical diseases. He charged $500 in cash and did all the tests himself, including a sigmoidoscopy. Unlike typical practices, he personally examined the samples. After six months of suffering, we got a diagnosis the next day: amoebiasis. With the right medication, she began to improve within weeks.
Dr. Cahill, who passed away in 2022 (https://www.nytimes.com/2022/09/17/nyregion/kevin-m-cahill-d...), had a near-legendary reputation because of his success rate. He was one of the last U.S. doctors to conduct tests and analyze samples himself, a practice that gave him a much higher detection rate for parasitic infections.
Ten years later, we had a similar issue. My wife fell ill again, and despite numerous tests, nothing was found. We went back to Dr. Cahill. Once again, he called the next day with a diagnosis—this time whipworm and giardia. I tested positive too, despite having no symptoms. Dr. Cahill explained that these infections can easily pass between spouses but often don't affect children.
He lamented that modern medicine has drifted away from these hands-on diagnostic practices. In the latest edition of his book, he even published a study showing that major medical institutions only detected parasitic infections in about 50% of known positive samples. The main issue? Sample degradation during transit, disinterested lab technicians, and improper detection methods.
Dr. Cahill was critical of procedures like colonoscopies for detecting protozoa or small helminths. He explained that the bowel-cleansing laxatives used before the procedure wipe out traces of the parasites, leaving the doctor with an inflamed but “clean” view. It’s no surprise that issues return shortly after.
I believe that a significant number of people in developed countries may unknowingly live with parasitic infections, from whipworms to giardia to toxoplasmosis. A single instance of poor hygiene in a restaurant or undercooked food is all it takes. Ironically, poorer countries often have better detection tools due to reliance on old-school methods.
Considering AI's success in areas like breast cancer detection, it seems like there’s a huge untapped potential for AI in diagnosing parasitic infections, especially given the inconsistency and difficulty in manual detection. This is a pervasive issue that cuts across social status, and many infected individuals will never know unless they get lucky with the right doctor.
Very, very interesting--I have always assumed I inherited my mother's issues. Docs have done stool tests, nothing--but as it says they are prone to false negatives. The labs aren't good with the rare stuff. I almost certainly came down with malaria but made the "mistake" of going to the doc my wife worked with. GP, but he did work with DWB and had plenty of clinical experience with malaria. Labs come back a week later--they weren't set up to do the simple swab he ordered and substituted the closest thing they had which wasn't close at all. Came back "negative" so I'm not in the CDC data. The thing is I'm pretty sure of the initial infection point--20+ years earlier. At the time, three rounds of it before I got back to the states and talked to a tropical medicine guy. No symptoms at the time so he wasn't sure what he did would get it all. Never actually lab-diagnosed by the fever pattern is obvious and it responded to chloroquine but I was in an area with some resistance and couldn't take the right drug.
Do you know anybody else who does this sort of thing?
As a brazilian doctor, it's great to see people paying attention to tropical diseases. I gotta admit it's kind of surreal, intestinal worms and Giardia lamblia are an everyday thing here.
I'm wondering if the country he was living in doesn't do an endoscopy + biopsy when checking for celiac?
He should have come back negative on that.
My wife and son have Celiac, and I've been tested that way after an incident 15 years ago a lot like the patient in the article.
At the time the doctors were absolutely saying they wouldn't use a negative blood antibody test to determine a negative diagnosis, they wanted the biopsy.
I got tested for Giardia too. My symptoms started after a hiking/biking trip.
TFA: "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"
Reminds me of a reddit thread I saw years ago where someone mentioned they got malaria or something while traveling and it was treated with IIRC Ciprofloxacin which also cured a bunch of other issues they were having.
The thread was full of people mentioning that random rashes or other ailments that they assumed were just normal to their bodies for years were cured when they took Ciprofloxacin for a different infection.
My mother had a cough of five years that everyone thought was just her allergies. Cured by unrelated antibiotics. (Not that they did anything about the underlying allergies, just took out what she thought was a symptom she had to live with.)
> 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
Ingredients lists are not enough.
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.
One confounder with gluten is that every single type of bread except well produced sourdough is high fodmap. And fodmaps can produce a lot of digestive symptoms.
Celiac is more well known than fodmap issues, and you'd have apparent causality. Eat bread, feel bad. Don't eat bread, feel better.
But not perfect, as many other foods are high fodmap.
Anyway it turns out those with giardisis are sensitive to high fodmap foods so perhaps that could explain it. (Surprisingly also sensitive to low fodmap foods)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653841/
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
>> 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.
When I was diagnosed back in the mid 00s, the tests were:
- A blood test for elevated levels of tTG-IgA antibodies, which are produced by the celiac autoimmune reaction. This has something like a 5% false negative and 10% false positive rate, so it's generally a strong indicator but doesn't totally confirm the diagnosis. - An EGD/biopsy of the small intestine. The lining of the small intestine is damaged by anti-tTG antibodies in a way that's recognizable under a microscope.
Sounds like a standard celiac blood panel.
Definite evidence is both a positive blood test and villous atrophy found by taking biopsies of the small intestine.
If you're in an area with excellent health care any GI doctor should be able to explain that the blood test can be conclusive for a positive but not for a negative.
If there is any question they should be doing an endoscopy and taking a biopsy of the small intestine. Celiac disease causes the body to destroy villi and they can see that under the microscope.
As does tropical sprue, Crohn’s, and a host of other infections and autoimmune diseases.
Reminds me of the story of how H Pylori was discovered to be the cause of many gastric ulcers by a couple of doctors who, after consistently finding it in ulcer patient cultures, decided to test their theory by deliberately ingesting H Pylori. It gave them ulcers, which they then cured by taking antibiotics.
but why does chronic giardiasis present as or produce gluten sensitivity?
> No matter how much he ate, he kept losing weight. At one point, he logged his caloric intake for a college nutrition class and found that he had been eating seven thousand calories a day, despite looking sickly thin
Is this even possible? And- only half joking- if it is indeed possible, why isn't there a queue of people waiting to get the parasite installed in their body?
I love the quote at the end :)
FYI. From article. It is an infection. Came here hoping for an answer, sadly don't think this is my case. Gluten/Thyroid is pretty hard to nail down..
"Giardia lamblia, occasionally called “beaver fever,” is an easily treatable intestinal parasite, unlike celiac disease. If you’ve been backpacking long enough, you probably know someone who’s gotten it. Giardia is normally an acute infection that causes diarrhea, horrendous gas, and other intestinal malaise, but doctors can corral it easily with antibiotics. The chronic form of giardiasis is lesser known, however. The friend sent Johnson medical studies showing how chronic Giardia infection can cause celiac-like symptoms. "
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?
GPT and Drugs dot com both suggest individually trying these as needed: metronidazole/tinidazole, nitazoxanide, albendazole. I would try them only one at a time, not together. I fear that taking metronidazole and albendazole together might also risk SJS or some such adverse reaction. The doses of each are well known. Rifaximin is also commonly discussed in such circles, but it wasn't mentioned.
Even before these, I would try taking just 3g activated charcoal daily for up to a few days, but away from all medicines. It often (but not always) proves quite beneficial for me.
As for ivermectin, it won't hurt to try it, but we haven't established a connection of it to chronic giardisis.