Early summer of 2017, I was a mother of five and wife living on a small family farm in southwest Virginia, where I worked as a wedding photographer. One evening after shooting a wedding, I had severe stomach pain and cramping, and then I started vomiting. I figured I had a bad case of food poisoning.
As a wedding vendor, I ate whatever the guests ate, which was typically some sort of barbecue, beef, or steak. That evening, I’d had a prime rib for dinner. But throughout the next several wedding weekends, I continued to experience waves of sickness. At first, I thought it was a strange coincidence that I kept getting sick after weddings.
I didn’t put much thought into it until a week or so later when my husband grilled us steak for dinner. I only ate a few bites because it just didn’t seem appetizing to me. But around 1 a.m. that night, I woke up with severe stomach pains again. My hands and feet began itching—and it was the worst itchy sensation I have ever experienced. A few minutes later, my hands and feet began to swell, and I walked into the bathroom to look at myself in the mirror. My entire body was covered in huge two- to three-inch welts.
I started feeling really faint and my throat and tongue swelled up. I knew I was having a serious allergic reaction to something, so I woke up my husband and asked him to get me a few Benadryl tablets. Fifteen minutes later, the swelling had worsened, and my itch became so bad that I felt as if the only thing that would stop it would be to burn off my skin. I took three more Benadryl tablets, and my symptoms started to calm down. My husband stayed up with me until the swelling subsided a bit and I fell back to sleep.
The next morning, I made an appointment with a doctor to get checked out.
I’d recently read a random article on alpha-gal syndrome (AGS), a food allergy to red meats and products made from mammals that most often begins when you’re bitten by a Lone Star tick. Because these ticks have a sugar molecule called alpha-gal in their saliva, scientists believe their bite can trigger mild to severe immune system reactions in some people. Unlike other food allergies, which often pop up as soon as you’re exposed to a trigger like peanuts, AGS can take three to six hours to cause a reaction (possibly because alpha-gal molecules take longer to be digested).
Knowing I lived in an area where these ticks and this mysterious condition were increasingly common, I wondered if I’d developed it and asked the doctor to test me for it. Like many doctors, she’d never heard of AGS and initially thought I was talking about Lyme disease, another tick-borne illness.
I insisted alpha-gal syndrome was something different, and she and her assistant went to their computers and began researching it immediately. The doctor called the lab to figure out how to test for it and drew my blood.
A few days later, she called to let me know I tested positive for AGS.
At first, I was only instructed to stay away from beef. I continued eating pork for the next few months, but I developed horrible, poison ivy-like rashes. I suspected the pork was causing my skin issues, so I stopped eating absolutely all mammalian meats.
My allergy was so extreme that if my family cooked meat inside our kitchen and I breathed in the fumes, my throat would start to itch and swell and I’d start coughing and have trouble breathing. Sometimes, I’d even become nauseous and have horrible headaches. Our whole family had to make major adjustments to our diet.
I went in for another checkup months later, and my doctor was concerned about my weight—I’d lost 30 pounds from eliminating all mammalian products from my diet. She was surprised I hadn’t “grown out of” my allergy by then. However, I learned that was another common misconception about AGS: While some people can get over the allergy in a couple years or so (lucky them!), many of us don’t recover quickly—or at all.
For me, the only solution is to avoid tick bites and my triggers the best I can. Unfortunately, I was bitten again.
From that summer until mid-2019, I managed our family’s sweet herd of miniature LaMancha and Nubian goats and ran a small dairy with hopes of expanding it into a full-time creamery. But the spring of 2019, I was bitten by another AGS-carrying Lone Star tick—and I developed a severe dairy allergy.
The tick was only attached for about an hour, but that was long enough for it to exacerbate my AGS symptoms. When I drank milk, my throat and mouth became itchy, and if I continued to consume dairy, I’d develop full-body hives, GI issues, and trouble breathing. When I pet our goats and touched my face, my eyes began to itch and swell.
This was heartbreaking for me. I was very attached to my goats—they were my babies! And now, I had to let go of my dream of opening a creamery. Sadly, we’ve had to downsize our herd of dairy goats from about 50 to now only 17 of our favorite goats. The rest were re-homed to wonderful farms.
Now, I take Zyrtec daily so I can keep my pet goats, though I don’t milk them anymore or make cheese. Along with the goats, I’m now allergic to our dogs and horses. Thankfully, antihistamines keep my symptoms at bay enough to where I can still enjoy my animals in smaller “doses.” I’ve also become deathly allergic to wasps and hornets, though, so I always carry an Epipen. (This is yet another complication of alpha-gal syndrome—people with AGS may be five times more likely to be allergic to other insects.)
I also have to be extremely careful when my family and I eat out. Many restaurants still don’t understand the alpha-gal allergy and just think I’m a strict vegan, although I *can* still eat poultry and fish (anything with feathers or scales is safe!). Unfortunately, I’ve dealt with reactions from cross-contamination when eating out. Still, a handful of restaurants have been wonderful, and I greatly appreciate their efforts in keeping me safe.
Another important consideration for me is checking the ingredients label on absolutely everything. For example, I’ve run into issues with doctors not understanding the severity of my allergy and prescribing me medications that contain mammalian gelatin or come in gelatin caps. And in my case, basically any gel cap that’s not labeled as vegan or vegetarian-based is unsafe.
I understand that researchers and medical professionals still have a lot to learn about AGS—it was only first discovered in 2009, after all. Hopefully in the future, doctors will have a much better understanding of this condition and perhaps some better treatment options for us, too.
On the positive side, I have been able to expand my diet and enjoy the current plant-based dairy options I have.
I definitely eat healthier than I did before, and though I miss junk food (and I *really* miss cheese!), I’ve learned to content myself in the fact that I live in a country with many delicious food options for allergy sufferers. Oatly’s oat milk is delicious, Earth Balance has decent plant-based “butter,” and cashew cream makes a good substitute for cheese.
I was always fairly cautious about checking for ticks after being outdoors, but now I really put effort into tick checks.
Lone Star tick nymphs—which, along with females, most commonly bite humans—are extremely small, about the size of a strawberry seed. They can be sooo hard to spot, so I try to shower as soon as I get in if I’ve been outside in tall grass or woods. Working on a farm, that can make things kind of difficult.
I’m also careful to coat myself in bug spray when I’m outside for an extended period of time. While many insect repellents are great for mosquitos and other insects, I recommend that you splurge on the heavy-duty stuff to keep ticks away. If you’re out for a long time, carry a lint roller and give yourself a good swipe to catch any ticks or tick babies that may be hanging out on your clothing.
All in all, life with alpha-gal syndrome has required a lot of changes, but it isn’t too bad. I hope I can overcome my allergy at some point in my life, but for now, I’m just thankful that I can still go outside and cuddle my goats.
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