I was experiencing frequent episodes that I believed were food poisoning. A blood test revealed that I had alpha-gal syndrome, a condition that causes an allergic reaction to meat. This disorder is often triggered by a tick bite and has significantly altered my daily life.
On a Friday afternoon, I broke out in hives, and I had no idea what was happening inside my body. This wasn’t the first time something like this occurred, so I anticipated the usual questions from the doctor: Had I used a new detergent? No. New lotion? No. New soap? No. New food? No.
When it came to new foods, I had deliberately avoided them for several months. This decision stemmed from the repeated instances of feeling unwell, which I initially attributed to food poisoning. These recurring illnesses made me increasingly concerned about food safety. When dining out, I always ensured that the meat was fully cooked (which was particularly challenging due to my colorblindness). At home, I consistently used a meat thermometer to check that the meat was properly cooked. I also washed my hands thoroughly after handling meat and never left food sitting out for more than two hours. Despite all these precautions, I continued to feel sick.
The appearance of hives prompted me to seek answers. After sending photos of my stomach covered in hives to my dermatologist’s office, I was instructed to undergo a blood test. The results finally provided a diagnosis: alpha-gal syndrome.
What is alpha-gal syndrome?
Alpha-gal syndrome is a meat allergy typically caused by a bite from a lone star tick. I live in Tennessee, where tick bites are common. It’s likely that I was bitten while mowing my grass.
Unlike other food allergies, those with alpha-gal often don’t experience symptoms until several hours after eating. This delayed reaction makes diagnosing alpha-gal without a blood test extremely difficult. Looking back on the day I developed hives, I remembered having a burger for lunch. By the time I returned home that day, the allergy had taken effect, and hives began appearing on my skin.
This syndrome is becoming more common
I was relieved to finally have a name for what was happening to me, and I discovered that I was not alone in experiencing these symptoms. According to the CDC, up to 450,000 Americans might have alpha-gal, with many people unaware they have it. The number of cases is expected to increase as awareness of alpha-gal and the spread of lone star ticks across the United States grows. In late May, the Department of Health and Human Services announced its intention to focus on reducing tick-borne illnesses, including alpha-gal and Lyme disease.
What it’s like to live with alpha-gal
Compared to others with alpha-gal syndrome, I have it relatively easy. Some individuals are highly sensitive to any mammalian byproduct, such as gelatin or milk. For me, I can still consume milk, eat ice cream, and be exposed to these byproducts.
I’m also fortunate that when I have an allergic reaction, it only feels like food poisoning. While it is uncomfortable, I haven’t experienced anaphylaxis. However, this remains a risk every time I consume my allergen, so I’ve been advised to carry an EpiPen. I was diagnosed about 18 months ago, and I’m still getting used to carrying it with me. I’m trying to improve my habit of bringing it whenever I leave the house.
I no longer get hives when symptoms occur; now I just feel like I have food poisoning, which I treat with rest and hydration. After 24 to 48 hours, I usually return to normal.
I rarely eat outside of my home
The most challenging aspect of living with this diagnosis has been my inability to eat outside my home. I’ve learned the hard way about the risk of cross-contamination at restaurants. Now, I only order from a few places, mostly fast-food chains. Fast food restaurants usually prepare food in the same way across locations, making it easier to determine if their air fryer is also used for red meat. They also provide clear allergen menus online.
In some ways, being diagnosed with alpha-gal has improved my life. I was forced to create new routines at home, increasing the number of homemade meals and reducing dining out. Creating new routines is something I struggle with, requiring significant executive function and self-regulation. As someone who studies executive function, I knew that starting a new routine would make my life easier. Being forced to do it gave me the motivation I needed.
Now, we eat almost exclusively at home. This allows me to control the ingredients we consume. I’ve become skilled at reading food labels. I already had practice because our kids have dealt with food allergies, but I’ve had to pay closer attention to ingredients since red meat isn’t required to be listed as an allergen on packaging. Sometimes lard is found in refried beans, tortillas, and pie crusts, so I’m always vigilant for potential triggers.
I’ve improved my cooking and baking skills. We keep the freezer stocked with pre-cooked chicken and ground turkey that can easily be added to a bowl with rice and vegetables. This means that when we would have ordered out before, I can quickly defrost the meat and prepare a meal for my wife and me.
This has been especially helpful during dinner time, which is often chaotic with two young children running around. Now that I can no longer eat ground beef or pork, we get all our protein from chicken or turkey. When we want a burger, we opt for turkey or chicken burgers. We quickly realized that imitation burgers don’t taste good to us.
My life is different, but not bad
What started as a major inconvenience has led to some positive changes in my life. Creating new routines is difficult, especially while raising young children. It takes time for a new routine to stick. However, these new habits have made a significant difference in my life.
Thanks to the steps I’ve taken, I haven’t had an alpha-gal episode in six months. I continue to learn about this condition, and I’ve been told there’s a chance my allergy may fade over time. If it does, I don’t think I would change the good habits I’ve developed.
