In 2014, after seeing several different specialists, the final stop before I gave up hope, was an allergist. I explained my symptoms and all the doctors I had seen who had thrown up their hands and I waited for him to throw up his and say he didn’t know what was wrong with me either. However, he was the first doctor to be able to look at me and say “I really don’t think this is what it could be but there’s a new allergy I read about a few weeks ago called Alpha-Gal Syndrome that we are going to test you for. The results will likely come back negative but we won’t know unless we try.” So he took the blood and sent it off for the tests to be done.
After four months of excruciating abdominal pain, swelling and bloating in my abdomen, unexplained trouble breathing and lip/tongue swelling I might finally have an answer!!! While I waited a few days for the test results to come back I looked up this syndrome he had mentioned. There wasn’t much information about it at the time and some people were responding to articles with things like “what a joke”, “this has to be made up”, etc. I found myself not believing it as well, being skeptical that any of it were true. Could someone really get bit by a tick and then be anaphylactically allergic to mammal meat? How insane.
My husband had perfected grilling steaks and we were eating them at least twice a week. I mean perfection. Seriously. But then, hamburgers on Memorial Day, July 4th, Labor Day….hot dogs, bacon? Ham at Thanksgiving and Christmas? My brain started going in a thousand directions. What if? What if this was truly about to be my reality?
Three days passed and I got a call from the nurse at the allergist’s office. She asked me to come in immediately, that afternoon if possible. I made arrangements to be there. They called me back and put me in a room and I sat there terrified waiting for the news. The doctor came in and handed me a print out of my blood work results. It was a bunch of gibberish about IgE this and IgE that. I had no idea what I was looking at. He explained to me that my tests had in fact come back POSITIVE for this new allergy called “Alpha-Gal Syndrome.”
He shook his head and apologetically informed me that he knew nothing about it other than the fact that I immediately needed to stop eating mammal meat. He continued to tell me that the reactions that I was having would likely only continue getting worse if I continued exposing myself to the allergen (mammal meat). He then explained to me that from what he had been reading it was possible for some people to react to by-products of mammal as well and that I would have to use trial and error to figure out if I was one of those people. He gave me a prescription for an Epi-Pen and told me to call him if I needed him and again apologized for not being able to provide me with more knowledge.
This is where life got really difficult.
