Alpha-Gal Syndrome or something like it

/ Jeff Cann

Alpha-Gal? No, it’s not a superhero from the 1960s. Not the PTA president at your kid’s elementary school. Not the captain of a cheerleading squad. Alpha-gal is an abbreviation, the familiar name of Alpha-galactosidase, an enzyme prevalent in red meat, and useful for breaking down oligosaccharides into monosaccharides in our digestive system. Beans, I’m talking about beans. Alpha-gal keeps you from farting.

Why do I know this? Yesterday, I took a blood test for alpha-gal syndrome. The results are pending. I check my email periodically to see if I have a notice: You have a new blood test awaiting review. I got four of these over the past two days. I expect three more. One of those is for alpha-gal syndrome.

You probably heard about alpha-gal syndrome some years back. Headlines screamed from all the outdoor fitness periodicals. Emerging Disease: Tick Bite causes Lifelong Meat Allergy. Alpha-gal syndrome makes you dangerously allergic to red meat.

A week ago, after a trail run through deep grass, my eyes swelled shut, my lips puffed up, and my airway began to close off. At the emergency room, they filled my veins with Epinephrine and Prednisone in a successful effort to stop the reaction. Reaction to what? No idea. My allergies are pretty typical. Pollen throughout May when the ornamental cherry tree in my backyard blooms. Dog hair, if I somehow manage to get it all over myself and don’t make any effort to clean it off. Poison ivy if I walk within ten feet of it on a windy day.

As a young teenager, the municipal golf course offered a summertime deal. Kids under sixteen could play the back-nine for three dollars between noon and four on weekdays. With my lawn cutting income—five dollars per lawn—I could afford to play a couple of times a week and still save for the school year. The cost of golf balls was actually a bigger concern than the green fees.

Every Monday, the swanky private golf club up the road closed for the day. At the start of the summer, my friends and I crawled through a hole in the chain link fence and dug around in the bushes looking for stray balls. These trips were wildly successful. We always found plenty of balls to last the whole season. And we always wound up with poison ivy from ear tips to toes. And then ten hellish days, ten sleepless nights as payment for our free golf balls.

As an adult, I wised up. I now take the time to scout out poison ivy before diving into the brush, and I almost never get a serious outbreak. But that’s because I understand my allergy; I know what to look for and how to avoid it. No one knows what happened to me last week. Yes, I ran through tall grass, and I’m allergic to grass, but my doctor shook her head. “This was a major system reaction. It didn’t come from topical exposure to grass.”

Lying in my hospital bed, my mind jumped to many possible causes. Tick bites ranked high on the list. With trail running, mountain biking, mountain bike trail maintenance, and a pair of cats that often visit me in bed with pea-sized blobs of engorged tick hanging from the underside their necks, my exposure to ticks is high.

My doctor ran three tick tests. One for Lyme disease, one called ‘the tick panel’ which checks for a wide range of tick induced diseases, and one specifically for alpha-gal syndrome. Two of these came back negative, I decided to read up on the meat allergy. The item that grabbed my attention is “Exercise and alcohol seem to be the most important co-factors for alpha-gal reactions.” No, I wasn’t drinking when I had my reaction, but I just finished a hard run. It seems exercise speeds up the reaction time and intensifies the symptoms.

When I got home from work that night, I decided it was too hot to run. I cooked some spaghetti for dinner. Eli suggested we fry up some hamburger for the sauce. With my red meat ingested, I got ready to run.

I don’t actually think I have alpha-gal syndrome. It’s a relatively rare condition, and it’s more prevalent in the southern United States than Pennsylvania. But it would be convenient to have something to point to for my reaction. Believe me, I don’t want an allergy to red meat. I tried a vegetarian diet a couple of years ago and my iron levels plummeted so deeply that I became chronically dizzy. Once diagnosed, my doctor prescribed a steady diet of meat, including beef, to accompany my iron supplements.

No, I don’t want a beef allergy, but I also don’t want an unexplained severe allergic reaction in my medical history. I don’t want to constantly look over my shoulder wondering when it might happen again. I frequently find myself running or biking miles from a road, and with no cell reception. A reaction like last week’s could wind up deadly.

Today, I scheduled allergy testing in July—the soonest available in a fifty mile radius. I hope I find the cause of my reaction—what to watch out for—so like my caution around poison ivy, I can simply avoid the allergen altogether.

Photo by Justus Menke on Unsplash

25 thoughts on “Alpha-Gal Syndrome or something like it”

  1. Sheesh, Jeff! I didn’t understand from your last post that it was an *exaggerated* reaction.

    Looks like we both have doctors scratching their heads, wondering WHY?

    Maybe it’s a side effect of lockdown and our immune systems not getting ANY workout (except for the vaccines) for so long?

    I hope you get some solid answers and they don’t suck!!

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    • Solid answers that don’t suck is the goal. Barring that, just some solid answers. I really don’t want to be left in a position where I’m afraid to be outdoors. Susan has already banned me from cutting the lawn.

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  3. Omg. I’m glad you’re alive. This health scare after health scare thing must be so frustrating and nerve-wracking. Here’s hoping answers are found and that steak remains firmly in your future.

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  5. Holy cow, I turn my back on WP for a second and come back to find you Angie are messes! I’m just kidding, of course. But only kind of 🙂 . I hope they find out what is going on with you so you know more about what to avoid (and don’t have to avoid everything). I have the same poison ivy allergy and ended up in the ER one day with my face swollen shut after being outside and someone must have been burning it. Just awful. I assume one of my kids is going to have the same allergy – I keep waiting to see who it is going to be but I don’t know yet. I hope you get some good answers soon!

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    • I know, Angie and I are hospital buddies. This is a lesson not to turn your back on wordpress. I’m really starting the visualize the end of this platform. I think it’s dwindling and that trend is gaining speed. Soon it will just be old rigid people like me writing blogs.

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  6. This is fascinating, Jeff. Thank you for illuminating all of this. I’d never heard of this allergy. I’m sorry, though, that you are having to go through this, and hoping that things get back to some relative normalcy soon, meat and all. Thanks to this line: Alpha-Gal? “No, it’s not a superhero from the 1960s” –I just can’t stop thinking that it would make a terrific superhero name, however satirical. May you be healthy and well and on your way to the next trail soon. : )

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    • I laughed out loud when I read the name of the allergy, and I knew immediately that I had to blog about it whether I have it or not. As I just wrote to Ellie, I’m having a hard time with the uncertainty of the whole thing. Really, I just want answers. I don’t think you followed me then but I had a long period with various medical issues that may or may not have been related, and I went to test after test looking for the cause. I really don’t think I can deal with that again.

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      • That sounds exhausting, Jeff. I can only imagine the stress flashbacks that this brings up. And the distraction of wondering can be terrible. I am hoping that you get some answers, and that they are good ones. Sending my best your way.

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  7. I’ve never heard of Alpha-Gal syndrome. So, I’ve learned something new here today. Always a good thing. It’s a bit worrying, knowing it can be caused by tick bites when you enjoy your running so much. I guess running along an artificial track wouldn’t be the same as running along a trail, so it must be worrying for you, especially if you’re in the middle of nowhere with no phone signal to get help. I hope you get your results back soon and that it’s nothing too inconvenient or serious. Given how ill you were last time you had a reaction, you really do need to find out as quickly as possible to be able to, hopefully, avoid whatever it is. Take care, Jeff.

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    • I imagine a-gal syndrome is a US thing. Running on a track… no. Or a treadmill. I run roads frequently, but I really prefer to be in the woods or on open fields. My running kin in the UK go ‘fell running’ which as I understand it is just running from point to point on whatever field happens to be below your feet. I think that sounds awesome. Re: my reaction, the not knowing is a bit of a problem . I’m not sure what I’m supposed to do. Eat meat? Don’t eat meat? Run in the woods? Mountain bike practices start in 3 weeks. Do I do that? Grrr.

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      • Ah, if A-Gal Syndrome is something that occurs in the US and not the UK, that would account for why I’ve not heard about it before. I do hope you get your results back soon, as it rather leaves you hanging in limbo until you find out what’s going on. Running is one of those activities I’ve dreamt about at times. I’d love to experience the freedom just to get up and go and feeling exhilarated out in the fresh air. Ah, well, I can but dream. Please let me know when you get your results back. I hope they shed some light on your mysterious condition/allergy 😊

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  9. Mr Cann, just checking in you’re fine? Feel I’m going to worry that something random and terrible has happened any time there isn’t a blog post often enough! 😬

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    • Yes, You should worry, Something is *always* wrong with me. I got my test result yesterday and I don’t have alpha gal syndrome, so now I’m waiting until mid-July to get general allergy testing to see what else might be the cause. I’m sort of in a writing funk right now. Last Thursday, I needed to write an article for work and it was like pulling teeth. Also, I’m not a super engaged follower either right now. Gotta snap out of it. Thanks for checking. Hope your trip is awesome. Looking forward to reading about your trip to the desert. I *might* go to Page in March to run a half… and then of course hang out and play in the SW.

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  10. Aw well thanks for replying, glad things are “ok” currently and hopefully they figure something out with the allergy test. Sorry to hear about the writing/following funk, I know it happens to me too sometimes.

    March is a ways away, you have an Oregon trip coming up too if I remember right? One thing that really struck me about the desert was how dry it felt, I wonder how that would affect the running of a half? Maybe it wouldn’t… I wouldn’t know though.

    Anyway until the writing funk dissipates, do take care!

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