Alpha-gal Syndrome: My Story

Once upon a time I was a happy carnivore.  I regularly cooked and ate steaks, brisket, ribs, sausage and burgers from cows, pigs, even deer and elk.  I like my steaks rare—just knock the horns off!   Today I neither cook, nor eat, nor order in restaurants, any of those delicious, carnivorous treats.  The reason why?  Well, let’s flash back to the beginning….

The Beginning

In the spring of 2022, my husband Larry and I bought a small camper and hit the state parks! 

Our camper’s maiden voyage was in May.  We camped at Windmill State Recreation Area in Gibbon, Nebraska.  On the second day, we walked the trail that circled the park.  Partway along the trail, after a stretch of walking through some tall grass, we noticed ticks on our jeans.  Gross! We brushed them off and kept going.  

Back at the camper, we did a quick tick check and went on with our day.  Later in the afternoon it got warmer out and it was time for shorts.  When I changed, I found a tick attached to the back of my right knee.  Larry removed the tick and we pretty much forgot about it.

Bug Bites?

During the month of June, I had a lot of what I thought were bug bites.  We were camping every weekend, so I assumed that it was just part of spending so much time outdoors. I didn’t think much of the itchy welts, even though they were not typically on exposed parts of my body.  They were mainly on my stomach, arm pits, and groin area.

We took a break from camping in the beginning of July, but the “bug bites” continued.  Then, on July 12^th, after eating an elk steak at home, I broke out in welts all over.  Obviously, these were not bug bites. I googled causes for hives.  One of the search results rang a bell.  Hives can be caused by a tick bite induced meat allergy called Alpha-gal Syndrome!  Remember that tick bite back in May? 

In retrospect, what I did next was risky, and let’s be clear that I am not recommending it in any way.  Alpha-gal reactions can be dangerous and life-threatening, and I seriously underestimated the risk out of sheer ignorance of the condition.  So, disclaimer: Kids, do NOT try this at home. Really, don’t. Anaphylaxis is bad.

A Dangerous Experiment

I decided to stop all mammal meat and dairy for one week.  After that week I would try eating a steak and see if the reaction occurred again.  During that week, the hives subsided.  At the end of the week, we went to Texas Roadhouse.  I ordered the prime rib, with a buttery sweet potato and those bacony green beans along with a Texas pour glass of pinot noir and those warm cinnamon butter rolls.  It was delicious!  Thinking back, if I had known that I was eating my last slice of prime rib, maybe I would have savored it more.  Alas.

The thing about Alpha-gal reactions is that they are not immediate.  The Alpha gal sugar that causes the reaction passes through part of the digestive process before your body reacts to it.  So I didn’t start scratching at my armpits in Texas Roadhouse.  Later that night, I did.  Hives continued to develop and become widespread throughout the next morning.

Thankfully, that reaction was limited to hives and itching, and I didn’t end up in the emergency room. But Alpha gal syndrome can be unpredictable, so please don’t take that chance.

Now What?

Now I felt like I knew what the problem was.  But what now?  An allergist confirmed my self-diagnosis and showed me how to use an epi-pen. But other than that, she didn’t offer anything useful about how to proceed.  I learned more from others with Alpha-gal syndrome in Facebook groups than the doctor offered.

I learned that animal derived products are everywhere. They are hidden in ingredient lists as natural flavorings, and hidden behind big words like magnesium stearate, and mono & diglycerides–or not listed at all because they are used as part of purification processes.  Cane sugar, and beverages like Dasani water and some beer and wines are filtered through animal bone char.  Turkey or chicken sausage sounds safe, but if the small print on the label says “pork casings” or “beef collagen casing” they are not safe.   Your Chapstick probably contains lanolin—which comes from sheep.  It’s basically an ingredients label minefield that takes real detective work to sort out. Animal products are used in cosmetics, and medications as well.  Those pain reliever gel caps–gelatin is derived from beef.

Navigating Alpha-Gal Syndrome

Alpha-gal syndrome presents differently for everyone. Obviously, I can’t eat any meat from mammals (birds and fish are okay).  With the exception of butter, I can tolerate occasional dairy without a reaction.  Some can eat dairy freely, some not at all.  I can’t cook meat. Like me, some people with AGS have “Fume reactions” to aerosolized alpha gal sugar particles resulting from cooking meat or being around strongly concentrated animal waste—a feedlot for example.   Even wearing leather will cause a rash for me, but not everyone with AGS has trouble with leather.  Thankfully I have never had trouble breathing with a reaction, but some do, and it means a trip straight to the ER. Do not pass go, do not collect $200. Finding your individual sensitivity levels takes time and can cause a lot of anxiety about food.

Navigating Alpha-gal Syndrome can be scary, but it is doable.  I promise!  So, take a deep breath and gather your courage.  You’re not alone.  We are on this journey together.

If you’re reading this because you or someone you love has been diagnosed with Alpha-gal syndrome, I hope you will follow my blog for information, encouragement, support, alpha-gal safe recipes and meal ideas.  You can also find me on Facebook and YouTube by searching for Susan by a Thread where I will be adding content regularly as we learn together.

For general information about Alpha-gal syndrome, use this link as a starting point to find some basic information.

https://www.cdc.gov/ticks/alpha-gal/resources/alpha-gal-syndrome-factsheet.html#:~:text=Alpha%2Dgal%20syndrome%20(AGS),can%20have%20life%2Dchanging%20effects.