Alpha-Gal: Surviving the Devil Try of the Lone Star Tick

Grilled Emu steak with lettuce, tomato and corn on the cob. Michael Heller photo

Not everyone shares the same nightmare. As a writer who deals largely with the currency of food, my personal “cold sweat in the middle of the night” version involves anything threatening to curtail my finely honed craft of eating. I’m 38, so, naturally, I recognize that my tendency to throw caution to the wind when faced with any old restaurant menu will soon be rewarded with something like gout or high cholesterol. The health consequences of eating what one wants are real. But what if, one day, I woke up to the news that I could no longer eat meat? How would that change my life?

On Eastern Long Island, many people are finding out the answer.

If you have not yet encountered the Lone Star Tick, a tick indigenous to the southern United States and Mexico, you probably will within the next ten years. This parasite is, in adult form, larger than its cousin, the much-feared black-legged tick, also known as the deer tick, which is responsible for spreading Lyme disease. Adult females present with an easily identifiable white spot on their backs. In many cases, a bite from a Lone Star Tick can trigger what is known as alpha-gal syndrome — a reaction that essentially causes an allergy to meat.

“What we believe is happening — this is not 100 percent confirmed — is that the tick saliva gets into the bloodstream,” said Dr. Erin McGintee, a Southampton-based allergist who deals with many of the East End’s alpha-gal cases. “Anytime there’s something foreign in the bloodstream, we develop an immune response.”

That immune response can look different depending on who happens to be experiencing it. When, three years ago, Ellen Dioguardi, an advertising executive at the Sag Harbor Express, developed alpha-gal, the syndrome presented itself in the form of swelling.

“I was sitting at my desk, drinking a smoothie with a banana in it, and my lips started swelling up,” she said. “I ran to my doctor, and, as I was driving to my doctor, I felt a rash on my thighs.”

At first, this reaction was not attributed to alpha-gal syndrome. Later, when she experienced the same outbreak, Dioguardi was tested for alpha-gal. Some investigation revealed that she was reacting to the animal-based gelatin coating on ibuprofen gel caps.

For Richard Warren, the owner of the environmental consulting firm Inter-Science Research Associates in Southampton, the road to alpha-gal was a little more transparent.

“I was bitten by a bunch of ticks doing a site inspection,” he said, “so now I have to avoid any kind of meat with a hoof.”

Warren knew nearly immediately that he had been affected by the tick bite and made changes in his diet to accommodate. For him, part of the new reality of living with alpha-gal syndrome has required vigilance. At restaurants, he must inquire about cross-contamination; a piece of fish cooked on the same grill that once grilled a piece of meat can trigger a reaction in many people. Due to the nature of his work, Warren is often exposed to ticks.

“Unfortunately,” he said, “I wind up getting bit by a tick about once a year.”

That second exposure is important. The way to determine whether a person is improving from alpha-gal syndrome is to test his or her antibody levels. These levels decline naturally over time. In many cases, people with lowered antibody levels can resume eating meat, starting with small portions of lean meats and working their way up. But there’s a catch. Any subsequent Lone Star bites could force these levels up again, and in a place where the Lone Star Tick has found a new, happy home, avoiding these bites may be more difficult than we think.

“The only thing we know that makes this allergy go away is being able to go a long period of time without a tick bite,” Dr. McGintee said. “I tell people to put permethrin on their outdoor clothing. There are good clinical studies that show that ticks are deterred by permethrin.” Developed in 1973, permethrin is an insecticide that can be used on clothing. “We don’t put it [directly] on skin, because it doesn’t work,” Dr. McGintee said. The insecticide will stay on clothing through seven to eight washes.

Dr. McGintee also recommended several other prophylactic measures, like spraying one’s yard for ticks, carrying insecticide with DEET, keeping deer off of one’s property, treating pets with tick and flea medication, getting rid of standing wood piles where ticks may live, and constantly surveying oneself.

“It’s got to be a multi-pronged approach,” she said.

For some people, like Dioguardi, living with alpha-gal is a challenge.

“I’ve battled weight issues my entire life,” she said. “I had just lost 65 pounds … It’s just, like, one more thing. For me, personally, it has been a nightmare, in a lot of ways.”

Still, Dioguardi has learned to cope with her new reality. Although she misses steak, she has found some solace in emu meat, since poultry does not trigger an alpha-gal reaction. Emu, she said, has a similar texture to steak, helping her to enjoy at least some of what she feels she is missing out on. There are other alternatives for avid meat eaters, too, including duck, and, of course, the newly popular Impossible Burgers.

As diners adapt, so, too, must chefs. Chef Avie Pavlou of Water Mill’s Bistro Ete in Water Mill suggests easy swaps that can accomplish the same goal.

“A customer [that] used to enjoy our chef’s steak with hen-of-the-woods mushroom sauce can no longer eat steak,” he said, “so we put the sauce on the duck breast. He couldn’t have been happier.”

In addition to providing alternatives for formerly meat-eating guests, chefs must be hyper-vigilant about cross-contamination in the kitchen, since even something as basic as fish being cooked on the grill top used for meat can trigger an allergic reaction.

“My kitchen staff is well-trained and our menu is extremely friendly when it comes to dietary restrictions,” Chef Pavlou said. “Customers with severe and more uncommon allergies usually call ahead and we prepare something special.”

And while missing out on that New York Strip steak might cause some to lament, it does come with some benefits. In Warren’s case, developing alpha-gal has actually improved his overall health. “It has caused me to change my diet,” he said. “I eat chicken and fish. My cholesterol levels are good. My cardiologist is happy with what he sees.”

As life on Long Island changes — Dr. McGintee currently sees 520 patients afflicted with alpha-gal, and the numbers have risen steadily over the course of the past decade — the emergence and proliferation of alpha-gal is likely to become the new normal. As we look to the future, how we learn to live with alpha-gal will be part of a long and ongoing dialogue.

What Should I Eat?

As the alpha-gal problem grows on the East End, many may find themselves asking this: What should I eat? Meat-eaters will shudder at the idea of eliminating all things red from one’s diet, but there are some compelling alternatives.

Amaroo Hills Emu Farm

This Virginia-based farm and online retailers sells emu in multiple iterations. You can choose from ground meat, rump, filet, neck, round, and more. They also sell cuts of ostrich. Many suffering from alpha-gal syndrome swear by it — and Amaroo has a considerable following, meaning they do often sell out.

Crescent Duck Farm

You can find these Long Island ducks at numerous restaurants on the East End, but you can also purchase them online. Ducks are sold whole and in parts. The duck breasts, cooked to medium rare, are meaty and flavorful, not unlike a good steak. “I visit Crescent Duck Farm weekly. I know exactly where the ducks are coming from,” Chef Arie Pavlou of Bistro Ete said.

Burger Alternative

Restaurants around the East End are now carrying the Impossible Burger — a red meat-esque patty made from plants — or the Beyond Burger, another meatless alternative. You can find it at Rowdy Hall, among other places. In Sag Harbor, Drei Donnelly and Jessica Taccone, of the Hamptons Hawaiian pop-up, are selling their “Complete Burger” online. The burger, a blend of shiitake mushrooms, black beans, lentils, red quinoa, oat flour, and spices, is available by the box or case. Delivery is free for those within 10 miles of Sag Harbor.