Medical student's apparent celiac disease responded to giardiasis treatment

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.

>> 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.

For testing: As the article says, find a doctor that has experience with it and ask for an antigen test. The below capacity thing can be very real, supposedly a different parasite in the us is responsible for people in southern us having the stereotype of lazy. In that case it could infect you through your feet from tainted soil. https://www.pbs.org/wgbh/nova/article/how-a-worm-gave-the-so...

Thanks, I'm certainly going to try that. I was more asking if anyone has experience getting tests done properly in light of their low accuracy. From what I understand, an antigen test is still a stool test, meaning they are only 50% accurate. As a commenter on this post shared, managing the health system is challenging in this area. I just did a bit of googling, and found a couple of leads here:

> CDC recommends collecting three stool samples from patients over several days for accurate test results. Commercial testing products for diagnosing giardiasis are available in the United States. [1]

Perhaps running three tests is the standard of care, or if not one might advocate for this based on the CDC recommendation. And if dismissed, perhaps there are commercial products available at the consumer level.

[1] https://www.cdc.gov/giardia/hcp/diagnosis-testing/index.html

Where I live, microbiologists work the diagnosis by examining stool through a microscope. Nowadays, though, doctors are lazy and just prescribe antiparasitaries without a diagnosis.

I was taught to suspect worms only in children and immunicompromised adults. And I never found the exception.

> 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.

> 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.

> 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.)

It's true though, southerners aren't as productive as yanks.

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.

Odd that you never found what you weren't looking for ...

I just hope that when the time comes for my next version, I’m recompiled with the -ALLOW_GLUTEN_INTAKE flag

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.

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.

Veering offtopic, your phrasing reminds me of the short story that made me discover Cory Doctorow:

https://www.salon.com/2002/08/28/0wnz0red/

(shit, >20 years ago!)

Stool tests are questionable to begin with.

I have a positive antigen test for celiac disease (I had 2 elevated antigens actually, both associated with celiac disease). The gastroenterologist told me I have celiac disease. Yet I've never experienced symptoms.

I stopped eating gluten and the associated antigens went down to normal levels. I don't feel any better or worse though.

The literature says there are false positives, and I've always wondered if might be one of them. I've searched celiac forums and I've never encountered anyone with a false positives diagnosis. Lots of false negatives or non-celiac gluten sensitivities though.

I do have the gene required for celiac disease, but most who have this gene do not have celiac disease.

... Take it from someone with celiac. You don't always feel it. I didn't for decades.

But it caught up with me. Really badly. And when I say badly, it nearly killed me. I got hypocalcima, and fuck me if it wasn't the most painful thing I ever endured. I've broken bones, etc. All that shit is child's play to every muscle in your body locking up and your body feeling like it is getting stabbed with needles all over. Thankfully once they give you calcium, it goes down. But... I was probably an hour or two away from dead, from asphyxiation.

I played with fire again, and caught it quicker the next time. But I had no concrete diagnosis. Now, I do.

Oh, as a bonus, I got the bones of an 85 year old woman with osteopenia.

Don't fuck with this shit internet stranger. Please.

Here is a thought. If you're having difficulty finding proper testing, just have a doctor prescribe the treatment for giardiasis. After finishing it, you can test whether things are now better for you.

Wow, I'm the same. Celiac with very few symptoms.

Hearing this makes me want to keep on track. But I would like regular blood tests to find out if my nutrition absorption is improving. That would at least motivate me to keep eating this restricted diet.

Good to hear your story as a warning.

Depends on where you live. Parasites are utterly endemic in areas as close as a 30 minutes drive away from me. They are commonly found in patients of all ages, including otherwise normal functioning adults.

Depending on the epidemiology, testing a population is a waste of time and money. They have a very high chance of having the disease and a very high chance of reinfection even after treatment. So what happens is those patients come in every once in a while and they straight up ask for their periodic albendazole dose. And then they go back to their homes and they drink the exact same water and eat the exact same food.

I'd say he wrote that just after reading Snow Crash in about 1998

In your experience, are doctors generally willing to do this?

I can't speak for the US but a friend in the UK was recently diagnosed with giardiasis, not chronic though. As far as I can tell it was simply a routine check because of the symptoms. He didn't give me the impression that it was a difficult diagnosis to obtain. The medics reckoned that it came from a bag of contaminated salad leaves.

Surely you just go to your GP, explain your concerns and symptoms and get tested. Here is the UK NHS page on the subject: https://www.nhs.uk/conditions/giardiasis/

If you're in the US, I'm sure you can convince a doctor to help you. Since the treatment is not life threatening or a narcotic and just a course of antibiotics, you should have no problem.

Then push for them.

For me the motivation is maybe not having to worry about breaking a hip if I fall.