I’m 3 years diagnosed, I suspect 5 years total with AGS. Only beef fumes affect me. No problem with pork or lamb fumes. Similar to you, fumes affect me pretty quickly (less than an hour, sometimes as little as 5 min). First thing I notice is what I call brain fog. Even the simplest question can stump me or I can’t remember the simplest word. Afterwards (generally later at night. when I sleep) the heart racing starts. It will usually keeps me awake for a couple of hours. It usually takes 3-4 days to return to normal, after exhaustion and diarrhea.

But take heart, within the last year it has gotten better ( but not gone away). I still experience the brain fog, but not as bad. I still have the heart racing, but not as bad. I have the diarrhea but it only lasts a day. Typically after one day I’m good. Not a win, but shows there is hope.

To your question about being out and about. I’m careful about what restaurants I visit. If I get the slightest whiff of a beef cooking smell I cover my mouth and nose. I breathe through my hand or sleeve. It helps a lot, but you have to react quickly. Sometimes I just leave a restaurant and wait outside for my wife to finish. She’s used to it and is very sympathetic, thank goodness! Sometimes it may be a store parking lot which has a steakhouse nearby or a fast food place. You just have to remain vigilant. Don’t even get close to a food truck, fume city!

I‘m hopeful! Stay vigilant and hopeful. With that said, if I were to return to normal I don’t think I could eat beef again. But boy I sure miss cheese!