12 ms·

Medical student's apparent celiac disease responded to giardiasis treatment

232 points by BostonFern 2y ago

pazimzadeh 2y ago
> 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.
- Zenzero 2y ago
  > Is that giardiasis treatment, or just let's kill everything and hope for the best? Glad it worked out for him. The second one.
- hggigg 2y ago
  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.
spondylosaurus 2y ago
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?
- ejstronge 2y ago
  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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5677194/)
  - spondylosaurus 2y ago
    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.
- graeme 2y ago
  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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653841/
mayneack 2y ago
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.
- lurking15 2y ago
  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.
  - mayneack 2y ago
    It was years ago so I don't remember the exact antibiotics, but the side effects were intense.
- Workaccount2 2y ago
  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.
  - 93po 2y ago
    same - lactose free milk gives me extreme fatigue, has does lactose with lactaid pills.
- tstrimple 2y ago
jim-jim-jim 2y ago
I've been looking for relief from abdominal pain, bloating, poorly formed movements, and breathing problems for well over a year now. It started right after a round of antibiotics, which strikes me as a very clear cause-and-effect situation involving some sort of microbial imbalance. I don't think restrictive diets are a great idea, because I want to stay healthy otherwise and ultimately restore that balance, but curiously enough, I've found that wheat might be exacerbating some of these symptoms—despite eating it without issue my whole life. No matter how neutrally and deferentially I approach doctors with this info, I'm treated like a paranoiac for merely inquiring about certain possibilities like so-called SIBO. I'm pretty sure I'd get dragged straight to the loony bin if I ever mentioned parasites. Sorry for making this about me, but I wrote all this to say: this guy is very lucky he's a medical student. Even with similar evidence, I have a hard time believing he'd get medicine (and respect) as a single mother. The moment she whipped out slides like he did, they'd be writing an antipsychotic Rx.
- vasco 2y ago
  You need to prove your knowledge to doctors contextually, and even then it's much easier if they are not actively giving you a consultation. Doctors don't respond well to randomly dropping theories on them. If you respond to something by dropping an inappropriate paper for the illness or ask about rare issues when common ones would fit they'll stop listening. Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". It's rare to have someone capable, who isn't going to jump to conclusions and just complicate everything, so I get why they discard most of what people tell them.
  - n8henrie 2y ago
    This is about the most charitable thing I've ever read on this site about physicians. As a physician with a degree in nutrition, I find most HN threads about medicine, nutrition, or the health system very frustrating, and in spite of it being the only area in which I'm formally qualified to opine, it's also where I've earned most of my downvotes (which prior to 500 internet points kind of mattered). I eventually learned to just bite my tongue here. Curiously, I think my "hacker spirit" is what drove me to medicine. In undergrad, I was spending 5+ hours per day reading medical literature (mostly nutrition, endocrinology, exercise science) and had decided that doctors were mostly idiots, and eventually decided to change majors from ME to pre-med. In medical school, I was a real handful to many of the lecturers, which I kind of regret now. Ends up it is really easy to publicly humiliate someone when they mis-state or misunderstand a minor detail that you've studied in depth, even if they have far greater expertise in the field. In medical school, residency, and practice (EM), I've learned a lot about why things are the way they are. In my field, many patients are entirely obsessed about some problem and completely lose track of reality when discussing it. It becomes part of their identity. They don't know how to read or evaluate medical literature, and they lack the background knowledge to the extent that even beginning a discussion is onerous. It's like your uncle who is far to one side or the other of the political spectrum and is well read but only in support of his biases -- yes, you might learn something this time, but do you really want to get into long discussion to find out? He already "knows" all the answers to many unstudied questions, and knows why the studies are wrong for the others. There are so many of these patient encounters that it is entirely infeasible to engage with even a small proportion of them and still get your job done, so you learn to nod, smile, and move on to determining whether or not a life-threatening emergency exists or not. You definitely don't have time -- at least in my field -- to really listen and consider all of these. Unfortunately it's not always easy to differentiate symptoms that are possibly psychological, exaggerated, self-limiting, or impractical / impossible to diagnose in my clinical context, from those that present opportunities for me to make a difference even if not a true emergency. I still think that many doctors are idiots that lack critical thinking skills and self-reflection, and unfortunately almost nobody outside of academics reads primarily literature that isn't forced on them (MOC). I've tried to show many friends and colleagues how to set up RSS feeds for pubmed queries for their topics of interest -- zero people have seemed impressed. In contrast, I think much of HN leans heavily on representativeness heuristic and doesn't consider likelihood ratios when evaluating their test results. Anyway, thanks for the considerate comment.
raverbashing 2y ago
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.
- anonymous344 2y ago
  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
throwawaygluten 2y ago
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.
- consumer451 2y ago
  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?
  - ineedaj0b 2y ago
    They use less gluten in Europe
  - RickS 2y ago
    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.
fxtentacle 2y ago
I love the quote at the end :)
dcx 2y ago
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.
- s5300 2y ago
  >> 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.
- fl0id 2y ago
  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-south-a-bad-name/ https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-so...
dataviz1000 2y ago
> 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.
- anonymous344 2y ago
  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
- LorenPechtel 2y ago
  Ingredients lists are not enough.
itronitron 2y ago
>> 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.
- macobrien 2y ago
  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.
- ben7799 2y ago
  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.
  - BostonFern 2y ago
    As does tropical sprue, Crohn’s, and a host of other infections and autoimmune diseases.
- Miner49er 2y ago
  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.
anonymous344 2y ago
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?
- OutOfHere 2y ago
  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.
dsign 2y ago
> 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.
bsmirnov 2y ago
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-dead.html 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.
deleted 2y ago
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ben7799 2y ago
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.
- nightpool 2y ago
  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"
Suppafly 2y ago
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.
- LorenPechtel 2y ago
  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.)
CobaltFire 2y ago
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!
throw310822 2y ago
> 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?
- Aeium 2y ago
  I think there are people that have intentionally swallowed some tapeworm eggs for a similar reason to this.
DoreenMichele 2y ago
“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."
- Izikiel43 2y ago
  Was it successful?
  - DoreenMichele 2y ago
    I'm not dead, so by some metric, yes.
    - maxbond 2y ago
      I am glad that you're still with us. May your remaining days be happy, healthy and numerous.
DebtDeflation 2y ago
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.
FrustratedMonky 2y ago
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. "
miek 2y ago
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"
Jimmc414 2y ago
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.
qbxk 2y ago
but why does chronic giardiasis present as or produce gluten sensitivity?

232 points by BostonFern 2y ago

> 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.

Zenzero 2y ago
> Is that giardiasis treatment, or just let's kill everything and hope for the best? Glad it worked out for him. The second one.
hggigg 2y ago
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.

spondylosaurus 2y ago

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?

ejstronge 2y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5677194/)
- spondylosaurus 2y ago
  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.
graeme 2y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653841/

mayneack 2y ago

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.

lurking15 2y ago
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.
- mayneack 2y ago
  It was years ago so I don't remember the exact antibiotics, but the side effects were intense.
Workaccount2 2y ago
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.
- 93po 2y ago
  same - lactose free milk gives me extreme fatigue, has does lactose with lactaid pills.
tstrimple 2y ago

jim-jim-jim 2y ago

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

vasco 2y ago
You need to prove your knowledge to doctors contextually, and even then it's much easier if they are not actively giving you a consultation. Doctors don't respond well to randomly dropping theories on them. If you respond to something by dropping an inappropriate paper for the illness or ask about rare issues when common ones would fit they'll stop listening. Most of the people a doctor gets either almost can't read or think they have all the diagnosis from "the internet". It's rare to have someone capable, who isn't going to jump to conclusions and just complicate everything, so I get why they discard most of what people tell them.
- n8henrie 2y ago
  This is about the most charitable thing I've ever read on this site about physicians. As a physician with a degree in nutrition, I find most HN threads about medicine, nutrition, or the health system very frustrating, and in spite of it being the only area in which I'm formally qualified to opine, it's also where I've earned most of my downvotes (which prior to 500 internet points kind of mattered). I eventually learned to just bite my tongue here. Curiously, I think my "hacker spirit" is what drove me to medicine. In undergrad, I was spending 5+ hours per day reading medical literature (mostly nutrition, endocrinology, exercise science) and had decided that doctors were mostly idiots, and eventually decided to change majors from ME to pre-med. In medical school, I was a real handful to many of the lecturers, which I kind of regret now. Ends up it is really easy to publicly humiliate someone when they mis-state or misunderstand a minor detail that you've studied in depth, even if they have far greater expertise in the field. In medical school, residency, and practice (EM), I've learned a lot about why things are the way they are. In my field, many patients are entirely obsessed about some problem and completely lose track of reality when discussing it. It becomes part of their identity. They don't know how to read or evaluate medical literature, and they lack the background knowledge to the extent that even beginning a discussion is onerous. It's like your uncle who is far to one side or the other of the political spectrum and is well read but only in support of his biases -- yes, you might learn something this time, but do you really want to get into long discussion to find out? He already "knows" all the answers to many unstudied questions, and knows why the studies are wrong for the others. There are so many of these patient encounters that it is entirely infeasible to engage with even a small proportion of them and still get your job done, so you learn to nod, smile, and move on to determining whether or not a life-threatening emergency exists or not. You definitely don't have time -- at least in my field -- to really listen and consider all of these. Unfortunately it's not always easy to differentiate symptoms that are possibly psychological, exaggerated, self-limiting, or impractical / impossible to diagnose in my clinical context, from those that present opportunities for me to make a difference even if not a true emergency. I still think that many doctors are idiots that lack critical thinking skills and self-reflection, and unfortunately almost nobody outside of academics reads primarily literature that isn't forced on them (MOC). I've tried to show many friends and colleagues how to set up RSS feeds for pubmed queries for their topics of interest -- zero people have seemed impressed. In contrast, I think much of HN leans heavily on representativeness heuristic and doesn't consider likelihood ratios when evaluating their test results. Anyway, thanks for the considerate comment.

raverbashing 2y ago

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.

anonymous344 2y ago
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

throwawaygluten 2y ago

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.

consumer451 2y ago
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?
- ineedaj0b 2y ago
  They use less gluten in Europe
- RickS 2y ago
  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.

fxtentacle 2y ago

I love the quote at the end :)

dcx 2y ago

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.

s5300 2y ago
>> 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.
fl0id 2y ago
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-south-a-bad-name/ https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-so...

dataviz1000 2y ago

> 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.

anonymous344 2y ago
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
LorenPechtel 2y ago
Ingredients lists are not enough.

itronitron 2y ago

>> 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.

macobrien 2y ago
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.
ben7799 2y ago
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.
- BostonFern 2y ago
  As does tropical sprue, Crohn’s, and a host of other infections and autoimmune diseases.
Miner49er 2y ago
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.

anonymous344 2y ago

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?

OutOfHere 2y ago
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.

dsign 2y ago

> 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.

bsmirnov 2y ago

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-dead.html 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.

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ben7799 2y ago

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.

nightpool 2y ago
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"

Suppafly 2y ago

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.

LorenPechtel 2y ago
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.)

CobaltFire 2y ago

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!

throw310822 2y ago

> 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?

Aeium 2y ago
I think there are people that have intentionally swallowed some tapeworm eggs for a similar reason to this.

DoreenMichele 2y ago

“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."

Izikiel43 2y ago
Was it successful?
- DoreenMichele 2y ago
  I'm not dead, so by some metric, yes.
  - maxbond 2y ago
    I am glad that you're still with us. May your remaining days be happy, healthy and numerous.

DebtDeflation 2y ago

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.

FrustratedMonky 2y ago

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. "

miek 2y ago

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"

Jimmc414 2y ago

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.

qbxk 2y ago

but why does chronic giardiasis present as or produce gluten sensitivity?