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Medical student's apparent celiac disease responded to giardiasis treatment

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Re: Medical student's apparent celiac disease responded to giardiasis treatment

#11
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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#13
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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#14

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 cur…

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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#15
> 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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#16
post #13

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…

>> 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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#17

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 cur…

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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#18

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 cur…

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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#19
>> 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.

Re: Medical student's apparent celiac disease responded to giardiasis treatment

#20

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 cur…

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 o…

> Bread is getting a bad name, yet whole civilisations have been founded on it.

However, modern supermarket bread is quite different to what people were eating even 100 years ago. We've selected for wheat with very high gluten levels as it makes for fluffier bread and we've started adding wheat to almost everything as it's cheap. It's very frustrating to go to a shop and see that products that traditionally don't have any wheat in them, now have wheat added to improve shelf life etc. Things like tortillas, onion bhajis, potato fries (or chips as we call them in the UK) etc.

Edit: Had a quick look to see if there's figures for gluten content over time and it looks like I've got the wrong impression from somewhere. This study shows that gluten content has remained relatively static: https://www.sciencedaily.com/releases/2020/08/200811120112.h...

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