There have been a number of recent reports on the prevalence of alpha-gal syndrome (AGS) on the Island. According to the latest figures from the Martha’s Vineyard Hospital, as of September 30, 2024, there were 365 confirmed positive cases here. This is up from just two confirmed cases in 2020. This does not include the cases diagnosed by private clinics. Dr. Edward Caldwell says that in his allergy practice, he often sees three or more patients a day who have AGS. He feels that the actual number of positive cases is much higher than has been reported.
Alpha-gal syndrome is a type of food allergy that makes people sensitive to products made from mammals. It usually begins with a lone star tick bite, which transfers a sugar molecule called alpha-gal into the body. In some people, this triggers a reaction from the body’s immune system. It causes mild to severe allergic reactions to red meat, and to other foods that come from mammals, such as dairy products or gelatins.
According to the Mayo Clinic, some people may have alpha-gal syndrome and not know it immediately. While most reactions to common food allergens — peanuts or shellfish, for example — happen within a short time, the symptoms of alpha-gal usually appear about three to six hours after you are exposed. Foods that can cause a reaction include red meat, such as beef, pork, venison, or lamb; organ meats; and foods made from mammals, such as gelatins and dairy products.
Symptoms of alpha-gal syndrome may include hives, or itchy, scaly skin; swelling of the lips, face, tongue, and throat, or other body parts; wheezing or shortness of breath; and stomach pain, diarrhea, upset stomach, and vomiting.
Researchers think the reason for the delayed reaction is due to the alpha-gal molecules’ taking longer than other allergens to be digested and enter the system that moves blood through the body.
If you have symptoms such as trouble breathing; rapid, weak pulse; dizziness or a lightheaded feeling; drooling and not being able to swallow; or full-body redness and warmth, (called flushing), seek medical attention.
For this article I interviewed three Islanders who have tested positive for AGS. They include chef Jean-Marc Dupon, writer Nancy Aronie, and hunter/farmer/businessman Brian Athearn. Each gave me a unique account of their experiences and symptoms.
“It took me a year to figure out what was causing my itching, hives, and welts,” Nancy Aronie said. Like Jean-Marc and Brian, she had been a lifelong meat eater. She said, “When my husband Joel and I invited another couple over for dinner, they informed us of their dietary restrictions due to AGS, and when I asked them about their symptoms, the lightbulb clicked on in my brain, and I realized that I was experiencing the same issues . . . I have changed my diet away from red meat, and now I feel much better, and also a bit grateful for the new restrictions, since it has made me feel better. I miss cheese more than any other food.”
Jean-Marc Dupon said, “[I] knew I had been bitten by a lone star tick, and when I experienced anaphylaxis, I went to my doctor and asked to be tested. The result of the test confirmed my suspicions, and I now must carry around an EpiPen to ensure that I can survive an attack if I eat something inadvertently that I am allergic to.” Dupon, whose family ran the fine dining restaurant Le Grenier for many years, says, “Good French cheese is in my blood.” He has tried many of the dairy-free cheeses but finds them woefully lacking in flavor.
Brian Athearn has the most positive attitude about his experience. He said, “This is the best thing that could have happened to me. I have lost more than forty pounds; I exercise more and have never felt better. I feel badly for the tourists and Island guests who come and don’t know, and then go home, and weeks or months later have symptoms that they would have no way to connect the dots on what it was or how they got it.” When I asked if he still goes hunting, he said that he and some of his friends donate venison to the food pantry and that he sometimes trades deer meat for scallops and fish. Dupon has also lost a lot of weight, while Aronie’s weight ping-pongs up and down.
All three gave me some tips to pass along to those who are victims of AGS. Dupon had cards printed that list prohibited foods. He hands them to the waitstaff at restaurants and asks that they be passed on to the chef. “Sometimes there may be only one choice for dinner,” he said. He has had mostly success, with a couple of exceptions. All three use dairy-free cream, milk, olive oil and margarine when cooking. For dessert, Dupon recommends ice cream made from oat milk or avocado.
Aronie recommends an app called Fig: Food Scanner & Discovery. You can try it for free for seven days, after which you must pay. It scans the barcodes of foods and tells you if you are allergic. In addition to diet restrictions and apps that help, Aronie said, “I have also had success with an antihistamine, which helps to reduce the itching I sometimes still experience.”
Many people don’t realize that gelatin may be made from the bones, skin, or cartilage of mammals, so that taking pharmaceuticals in gel caps can cause an allergic reaction in people with AGS. This has been confirmed in a study published by the National Institutes of Health (NIH). The same may be true of gummies, so it is important to read labels. In addition, according to the NIH, persons with blood types B and AB are less prone to AGS.
Another interesting development in the treatment of AGS is the use of Solimon Auricular Allergy Treatment (SAAT), which is a specialized form of acupuncture in the ear. According to the NIH, it has proven to be beneficial in many cases. “To treat the allergy to alpha-gal, the individual is indirectly exposed to the alpha-gal carbohydrate through simply touching a vial containing this allergen. The procedure does not involve any direct application of the alpha-gal orally or on/into the skin of the patient. The close presence of the vial appears to trigger the materialization of an auricular point that corresponds to the alpha-gal allergy. This auricular point can be identified using electrical equipment capable of identifying areas on the ear with different electrical gradients . . . A sterilized needle is threaded subcutaneously to avoid traumatizing the auricular cartilage and is taped to secure it in place. The needle is removed three weeks later.”
Acupuncturist Ty Romijn, who practices at Vineyard Complementary Medicine as well as Vineyard Pilates and Vineyard Bodyworks, has used auricular acupuncture, placing ten needles in each ear to release the trauma caused by the toxins associated with AGS, while using visceral therapy and Zero Balancing (skeletal bodywork) to free up the AGS organ tension. He also told me that a group of acupuncturists on Martha’s Vineyard communicate via email to discuss the protocols to treat AGS and are hoping to raise the money to invite Dr. Nader Solimon to come to the Island to train them in the use of SAAT.
Brian Athearn said, “I am interested in starting a weekly conversation group for people with AGS, and I am exploring locations.”
We must all be vigilant and try to avoid lone star tick bites if we want to avoid becoming victims of AGS.
