My AGS Discovery
I have really appreciated the willingness of this community to discuss their journey to diagnosis. I want to contribute, so here is my story....
It's a late evening in 2019, I'm laying in bed watching TV with my wife; suddenly my heart starts racing and it is hard to catch a breath. I shoot up from my bed and the world goes dim; I barely remain upright and uncontrollable shivering sets in. I am convinced I am having a heart attack and death is at hand. I get to the ER and my heart is good, I'm told it is IBS and anxiety but follow up with a cardiologist just to be safe.
The cardiologist puts me on a heart monitor for a month and notices strange patterns at certain times of the day. He assumes SVT and prescribes beta blockers (which I didn't take).
I realize I am not dying of heart disease but I don't want to either so I go on a serious diet; it was keto.....I did the Keto diet. So for a couple of years I ate protien almost exclusively and would have massive bouts of uncontrollable belching, shortness of breath, shivering and heart palpatations. This would happen daily and it was not everytime I ate, but it could be anytime at all.
I tried probiotics, liver cleanses, bone broth stomach resets; you name it and I tried it. I was convinced that I had some kind of terrible IBS or GERD and maybe I could do something to fix it. Sometimes my symptoms would fade for a couple of weeks, but then out of the blue they would come back.
Fast forward to 2026; AGS is all over the news. I'm an outdoorsy guy so I look in to this "new" plague. To my surprise I find story after story from people who have symptoms like mine. I decided right then to take matters in to my own hands. I found a lab (Quest Diagnostics) that allowed me to order my own AGS blood test. Sure enough, 3 days after my test I get a call from a staff physician to discuss my results; I have Alpha Gal Syndrome.
I had been sending myself in to anaphylaxis multiple times over the last 7 years and no one caught it! If you suspect you have AGS please get tested. It was an amazing relief to finally put a name to my misery; now I have an answer and I can do something about it.