New to AGS, but not new to AGS.
First off, super glad I found this page. I’m not a super big Reddit-er, but I have gotten a lot more help here than a lot of the nonsense on the interwebs.
I was diagnosed with AGS about three years ago. I stopped red meat completely (someone explained it to me as anything with hooves, you cannot eat). I still kept to my cheese and would not let go. I usually didn’t have anything too serious with cheese, especially if I took my meds from my GI (I mainly only ever had GI issues with reactions, but I also have a bit of a mix up from birth with most of my GI system).
This year, I flew a little too close to the sun I guess you could say. I started introducing red meat back in to my diet, first once or so a week, then a couple times a week. Same thing, as long as I took my meds (dicylomine aka bentyl) it kept it at bay with minor issues. I actually thought I was starting to beat it and able to start eating beef again. I did try a club sandwich with ham and that was the worst attack I had ever had at the time.
A little over a week ago, my wife and I were waiting on a rental while our car got dropped off at the dealer. The only place within walking distance was Steak n’ shake. I didn’t think it was a very good idea, but she said she thinks I will be fine. Mind you, my wife has zero medical skills or knowledge and I think is trying to off me for the insurance money. TOTALLY KIDDING.
I feel as though I’m rambling so I’ll get to the point. My symptoms are you usually delayed by 20-24 hours. The next day, this hit me about 12 hours. And absolutely destroyed my body. Not just GI, but my joints, my entire back, neck and I couldn’t stopping from expelling what seemed like everything I had eaten in the past month. This kept going on and on for a week straight. I was finally able to move around a little and get around this week, but my joints still hurt and I had noticed this was a normal occurrence more and more the previous few weeks before this. I still have to be extremely careful with what I eat, which is apparently only dry rice, pastas, and eggs.
I have a network of doctors (as my body is just a complete dumpster fire already) and I found out that I just lost my GI Doctor and my PCP (gotta love the VA) so I’m basically in a holding stage experimenting with my body. I have learned a whole plethora of knowledge from this page and reading everyone’s comments and how their reactions go and now I have so many unanswered questions that are answered and makes sense. I did have another doctor tell me that I really need an EpiPen, but then didn’t write me one or send me in any direction to get one, lol.
Anyways, if you stuck around this long, thanks to everyone and for this page and the comments. It just 100% made me feel better mentally.