[HN Gopher] Medical student's apparent celiac disease responded ...
___________________________________________________________________
Medical student's apparent celiac disease responded to giardiasis
treatment
Author : BostonFern
Score : 154 points
Date : 2024-10-16 03:25 UTC (19 hours ago)
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(TXT) w3m dump (www.backpacker.com)
| pazimzadeh wrote:
| > 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 wrote:
| > 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 wrote:
| 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 wrote:
| 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 wrote:
| 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/)
| spondylosaurus wrote:
| 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 wrote:
| 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/
| mayneack wrote:
| 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 wrote:
| 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 wrote:
| It was years ago so I don't remember the exact antibiotics,
| but the side effects were intense.
| Workaccount2 wrote:
| 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 wrote:
| same - lactose free milk gives me extreme fatigue, has does
| lactose with lactaid pills.
| tstrimple wrote:
| My wife developed gluten and dairy intolerance quite rapidly a
| couple years ago. I'm wondering if something like this could be
| related.
| jim-jim-jim wrote:
| 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 wrote:
| 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.
| theshrike79 wrote:
| 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".
| Pikamander2 wrote:
| The flip side of this is that doctors aren't infallible, and
| will often struggle with rare diseases that they don't deal
| with on a daily basis, or in some cases were never even
| taught about in medical school (such as recent discoveries).
|
| It's true that doctors have to deal with a constant flurry of
| "I did my own research and think this bruise I got yesterday
| might be liver cancer", but sometimes people with
| legitimately debilitating illneses slip through the cracks
| and have to aggressively advocate for themselves to get any
| real testing done, particularly if they have a very "let's
| wait a few months and see what happens" type doctor who never
| seems to make any progress on their own.
| vasco wrote:
| > but sometimes people with legitimately debilitating
| illneses slip through the cracks and have to aggressively
| advocate for themselves to get any real testing done
|
| Sometimes they do, but by definition it's likely not you.
| It's important to think here that everyone thinks "they are
| the informed one" or that they are the one that "might have
| the rare one". Same reason why most people have bought a
| lottery ticket in their lives or why everyone is of above
| average intelligence.
|
| I like being active in my medical treatments by doing my
| own research but I censor a lot of what I say to a doctor,
| it's usually more to make sure I understand what's going on
| and that I can double check things.
| catlikesshrimp wrote:
| 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.
| hansvm wrote:
| A technique I have a lot of success with is asking why <some
| observation> doesn't change their opinion. It leaves the
| doctor in a position of expertise and authority, so they're
| usually happy to spend the time teaching you. Normally I
| learn a lot about some gap in my medical knowledge, and
| sometimes the additional reflection changes the doctor's
| opinion and gives me better outcomes.
| LorenPechtel wrote:
| 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.
| m_fayer wrote:
| 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.
| dcx wrote:
| Speaking as someone who went through this, running experiments
| with your diet is absolutely worth trying. It worked for me.
| There is actually a specific medical practice for this: look up
| "FODMAP". The idea is to temporarily cut out all likely
| suspects for a short period, see if that fixes things, and then
| gradually reintroduce them to identify the culprit. A
| gastroenterologist recommended this to me. It didn't help with
| my issues at the time as gluten is not covered by this cluster,
| but struck me as a very sensible approach.
|
| In my experience the medical system is unusually useless and
| dismissive with digestive issues. I think this is probably
| related to how little it can do in this area. 10-15% of the US
| has IBS, and this is a disease of exclusion. That literally
| means that the medical system acknowledges a cluster of
| symptoms, but has no idea what is causing them or how to cure
| them. I can imagine that blaming patients is easier than the
| alternatives for some doctors.
| jim-jim-jim wrote:
| 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.
| LorenPechtel wrote:
| 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.
| Theodores wrote:
| 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.
| ndsipa_pomu wrote:
| > 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.scienceda
| ily.com/releases/2020/08/200811120112.h...
| timeon wrote:
| > 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.
| ndsipa_pomu wrote:
| 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?
| theshrike79 wrote:
| > 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/Ruisleipa
| jim-jim-jim wrote:
| 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.
| dustyventure wrote:
| 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.
| dbspin wrote:
| 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.
| gwervc wrote:
| > 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
| maxerickson wrote:
| If flour and machine made bread are not processed foods, it's
| obviously a meaningless bogeyman.
| itronitron wrote:
| You can get a blood test for indicators of celiac and gluten
| sensitivity, among other things.
| draven wrote:
| I got pretty good results with the autoimmune protocol (pain-
| free plus no more brain fog after 3 months of the elimination
| phase.) I talked about it to my GP who told me to do an
| allergy skin test, because blood tests were not 100%
| reliable.
| davzie wrote:
| I also went through this for 6 years.
|
| A guy on YouTube will help called Pain Free You. Recent studies
| suggest bad bacteria can continue to flourish if we are
| chronically stressed (which symptoms like this easily cause).
| Huge correlation between stress and flare ups for me.
|
| In the short term whilst you work on the mind-body aspect, I
| recommend taking Digestive Enzymes with each meal along with a
| Betain HCL + Pepsin supplement. These are the only supplements
| that removed my symptoms (and trust me I've tried them all).
| They work by ensuring you have the right level of stomach acid
| to properly digest food, proteins, carbs and fats so that by
| the time it hits your digestive tract, there's less undigested
| FODMAPs for the bacteria to feed off of.
|
| There IS a light at the end of the tunnel.
|
| Happy to chat about this and what I use since I know this can
| be hard to go through davzie at davzie dot com.
| anonymous344 wrote:
| Did you fixed yourself with these? Did you try probiotics
| (90% of them are shit) Did you try fasting ? how about milk-
| gluten-sugar free diet?
| davzie wrote:
| 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.
| anonymous344 wrote:
| 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
| davzie wrote:
| 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
| lurking15 wrote:
| 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.
| davzie wrote:
| 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.
| sersi wrote:
| 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
| davzie wrote:
| 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.
| ToDougie wrote:
| 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.
| raverbashing wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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?
| fxtentacle wrote:
| I love the quote at the end :)
| dcx wrote:
| 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 wrote:
| >> 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 wrote:
| 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...
| dcx wrote:
| 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
| catlikesshrimp wrote:
| 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.
| IX-103 wrote:
| Odd that you never found what you weren't looking for ...
| norvvryo wrote:
| > 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.
| spease wrote:
| > 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.
| nradov wrote:
| 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.
| nickff wrote:
| 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.
| engineer_22 wrote:
| It's true though, southerners aren't as productive as yanks.
| jancsika wrote:
| > 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.)
| dkga wrote:
| I just hope that when the time comes for my next version, I'm
| recompiled with the -ALLOW_GLUTEN_INTAKE flag
| renewedrebecca wrote:
| 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.
| dataviz1000 wrote:
| > 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 wrote:
| 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
| itronitron wrote:
| >> 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 wrote:
| 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 wrote:
| 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 wrote:
| As does tropical sprue, Crohn's, and a host of other
| infections and autoimmune diseases.
| Miner49er wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| > 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 wrote:
| 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.
| ben7799 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| CobaltFire wrote:
| 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 wrote:
| > 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?
| DoreenMichele wrote:
| _"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."
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