Sharing Stories - Rob

I brought this on myself. Although I’m a foodie specializing in Memphis style BBQ pork (Well, I was.) I’d always wanted to stop eating meat. I’d tried vegetarianism a few times but never stuck with it. I loved my beef and pork.

I live on 10 wooded acres. I have a herd of semi-tame deer, and lots of wild critters including ticks. In 2012 I noticed a periodic itching rash that would break out, starting on my inner thighs, about once a week, sometimes more frequently, and last about two hours. It was minor, and more of a curiosity than a bother. I didn’t report it during my annual physicals, and didn’t worry about it at all.

In 2014 the rashes got worse, to the point where they would cover my upper legs, arms, back, and belly, and I began taking Benadryl at first notice, hoping to lessen the severity. That worked for a while, but required more and more tablets as time went on. When I was up to six tablets I realized there was a real problem, and I began recording my diet, suspecting I was allergic to something.

I noticed that the rashes would start 2-3 hours after eating a McDonald’s double quarter pounder with cheese. That was so weird I blew it off at first. I mentioned it to friends and everyone said I was crazy. Who’s allergic to McDonald’s?

So I tested the theory and sure enough, the results were repeatable. Every time I ate a McDonald’s double quarter pounder with cheese I’d get the rash 2-3 hours later. So I stopped eating quarter pounders. Stupid, I guess, I didn’t make the connection to the actual beef. The rash continued, though, but still it wasn’t bad enough to worry me. Benadryl worked, and I decided to just live with it.

On a beautiful April morning in 2015 I made a breakfast of scrambled eggs with Chinese black fungus, and an amazing piece of artisan pork belly from the farmer’s market. It was delicious! At noon I packed my little black Pomeranian, Pearl, into the car for a trip to town to buy groceries.

Four miles from home, stopped at a red light, on the phone with my girlfriend, my tongue suddenly started to swell, and my vision became tunneled. I realized I was not going to be able to remain conscious, and figured I had about three minutes to get somewhere safe. The light turned green.

I sped across the intersection and turned into a shopping center where my primary care physician had an office. I parked the car, locked it, and left the engine running and air conditioner on for Pearl, and I went into the office, at this point barely able to talk and about to pass out.

I said to the receptionist (as best I could), “I’m a patient here. Something’s wrong. I am going to pass out.”

They took me into an exam room, where I waited while they called an ambulance. I was able to give them the name of Pearl’s veterinarian who had an office just across the street. I handed them my car keys and asked them to board her there.

The next thing I remember I woke up in a pile of my own feces with two paramedics fussing over me. I’d passed out and seized. Wheeling to the ambulance I got sick and threw up in the parking lot. I passed out again.

The next hour was a haze of intermittent consciousness lying on an ambulance gurney in a hallway of the emergency department, apologizing for my stink to whomever approached. I wasn’t thinking strait, and I had no peripheral vision.

Interestingly, my hearing seemed perfect, but I didn’t like what I heard – the paramedics talking, “Wait, this can’t be right. Try the other arm.” You don’t want to hear that when you think you’re dying. I learned later that my blood pressure had crashed dangerously.

Finally in the ER, several people questioned me about what I’d eaten. Everyone blamed the Chinese black fungus, mainly because nobody knew what it was, and it sounded far more noxious than the delicious stuff is. They treated me effectively for anaphylaxis.

At the recommendation of my physician I went to an allergist for tests. I mentioned the anaphylaxis to him, and also my suspicion about the McDonald’s burger. In addition to the normal scratch tests, he took a blood sample to test for Alpha-Gal. This test came back a week later positive, with a result of 89 out of 100 (whatever that means), a prescription for Epi-Pens, and cautions to keep away from mammal meat.

There wasn’t a lot of info on the web about the alpha-gal allergy. This was the allergist’s first case, so he didn’t know much about it. I read all I could (which wasn’t much) and found two other people with the same condition. We swapped stories and recommendations. I changed my diet to eliminate mammalian products.

Over the next year I was triggered a few times by things like chicken sausage with pork casings, fish oil pills in gelatin capsules, and Chinese food made more delicious with pork marrow – none of which listed “mammal products” on the ingredients labels. By this time I was carrying two epi-pens and four doses of children’s liquid Benadryl. Eventually I learned what to be suspicious of, and I’ve been without an incident for more than a year now.

I eat a mostly vegetarian diet – stir fry, tofu, fish, lots of healthy and delicious stuff. Every once in a while I cook up chicken, duck, or emu, and I’ve become really good at making veggies savory and satisfying. I’ve lost weight and I feel much better.

I have to be very careful when eating out, because after the Chinese food episode I know now that restaurants aren’t always forthcoming about their ingredients, and why should they be? We’re a tiny minority of people very well educated about our conditions, and able to make judgments about our own food safety. Anyway, at least there are a lot of good, safe vegan / vegetarian restaurants.

Some day when there are a significant percentage of us with this condition I hope that “mammalian products” will be added to food labeling just as peanuts are. Or better yet, a vaccine or something to just fix the condition.