4 ms·
I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysph
by lisper 2y ago
I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysphagia (difficulty swallowing). It can get extremely unpleasant for me as well as anyone around me when an attack happens. The problem is that the latency between eating the food that triggers it and actual symptoms is many many hours, and the symptoms only appear if you happen to swallow something that's just a little too big, and by then it's too late. It was only by sheer luck that I managed to figure out what my trigger is (scallops). In order to be diagnosed you have to get an endoscopy, which is also the only indicated treatment (other than avoiding the trigger food if you can figure out what it is).
I had this idea of using gel caps to get a better read on my internal state because you can feel them going down but they don't actually get stuck (and even if they do they dissolve pretty quickly and don't cause too much discomfort). The idea is to have them in a variety of sizes, and to start with small ones and get bigger until you can feel one. That gives you much more fine-grained data which you can then correlate with what you've eaten the day before. Trick is, I can't find a source of placebo gel caps in assorted sizes anywhere. I can't even find a manufacturer to make them for me. Every manufacturer I've approach about this insists on having some active ingredient, and they also want minimum orders in the thousands of units.
The irony is that I would have no problem getting these on the market as homeopathic remedies of some sort.
- reaperman 2y agoI get empty gelcaps from amazon and local nutrition food stores. They cost like $5 for between 100-1000. You can get them in a wide variety of sizes, though you might have trouble if you're looking for something larger than size "000" (1cm diameter, 2.6cm length). Here is a size chart[0] (but there are cheaper sources for the gelcaps). 0: https://ibspot.com/products/capsuline-size-1-empty-capsules-5000-count-acid-resistant-enteric-colored-vegan-empty-capsules-empty-veggie-pill-capsules-diy-vegetable-capsule-filling-kosher-halal-non-gmo-certified-white https://ibspot.com/products/capsuline-size-1-empty-capsules-...
- lisper 2y agoYeah I actually tried that but could not figure out an efficient way to fill them.
- reaperman 2y agoWould want a capsule filling tray. The opening of the large portions of the capsules are positioned at the same level as the flat surface so you can just pile up a bunch of sugar or starch or whatever and use a scraper to level it all off, then assemble the tops of each capsule. https://www.pennherb.com/cap-m-quik-capsule-filler-F7B https://www.pennherb.com/cap-m-quik-capsule-filler-F7B
- lazyasciiart 2y agoYou might get help from a compounding pharmacy if you can find one in your area.
- samjbobb 2y agoFYI for any other EoE folks: Dupixent is now indicated for EoE. It’s resolved my symptoms completely (both the ones I notice and the ones my gastroenterologist checks via scope). I don’t experience any side effects. It’s an off-label use, but swallowed fluticasone is also effective for many people. Also has no to minimal side effects. I did that for many years before dupixent was available. Exciting that you figured out your trigger. I collected a lot of data and made a lot of graphs, but never found anything conclusive. Great article. Taking control of your health via the tools we have as technical professionals is awesome.
- lisper 2y ago> Dupixent is now indicated for EoE. It’s resolved my symptoms completely How often does it need to be administered? Regular injections sounds like it might be more trouble than it's worth.
- samjbobb 2y agoThe indication for EoE is weekly, though I seem to be able to get away with every other week. Dupixent is a subcutaneous auto-injector pen, so it’s the least-bad injection. Injections definitely suck and everybody has to make their own trade-off assessment. If you can’t figure out your triggers, and a lot of people can’t, it’s great that we have an effective therapy available now. It dramatically improved my life … once I got over injection anxiety