MEXICO, Mo. — Life changed dramatically for Ted DeVault of Mexico in 2023 when he was diagnosed with alpha-gal syndrome (AGS), a serious allergic condition triggered by the lone star tick, which is common in Missouri.
After multiple life-threatening emergency room visits, DeVault began to lose his vision and experience double vision. The longtime Audrain and Monroe County livestock and grain farmer launched an exhaustive search for answers at leading medical facilities in and outside Missouri.
DeVault’s frustration and search for information were not unusual. A recent University of Missouri Extension survey on the experiences of people with AGS and those who support them showed that Missourians want more knowledge about the condition, says nutrition and health specialist Eden Stewart, who leads MU Extension’s AGS interdisciplinary team.
AGS causes reactions to alpha-galactose, a carbohydrate found in mammalian meat and byproducts. Symptoms vary from person to person and range from mild discomfort to life-threatening anaphylaxis. They usually appear two to six hours after eating meat or dairy products but can also occur within minutes of exposure to airborne hair, dander or cooking fumes. Common symptoms include difficulty breathing, joint pain, fatigue, dizziness and swelling of the eyes, lips, throat and tongue.
DeVault’s condition is complicated by other illnesses. He has had tularemia, a rare bacterial infection spread by ticks or deer flies; Rocky Mountain spotted fever; and Ehrlichia. He also carries a genetic variant for MTHFR, an enzyme involved in processing folate in the body.
In addition to the physical challenges caused by AGS, DeVault and his family had to make a complete lifestyle change. They no longer eat red meat — including beef, pork and venison — once staples of their diet. Today, it’s “fins and feathers,” DeVault says.
The family discovered animal byproducts in unsuspecting places such as sugar and bottled water, which can be processed with bone char from cattle. Animal byproducts may also appear in oils, vitamins and supplements. Even candies, crackers or a morning bowl of cereal may be cross-contaminated.
Because of the MTHFR variant, DeVault must also avoid synthetic folic acid. The family now buys wheat and grinds it into flour for breads and pastries.
Before contracting alpha-gal, the DeVaults traveled through 49 states and 17 countries. They still travel, but they must plan carefully, preparing meals in advance and carrying an epinephrine pen for emergencies.
Even small joys can turn risky. DeVault once reacted during a child’s Christmas play after sitting near someone wearing a sweater covered in dog hair. Visits to friends and family are limited to those with outside pets.
MU Extension nutrition and health specialist Rachel O’Halloran says DeVault’s experiences reflect the social isolation that can result from AGS.
“We want people to eat diverse and healthy diets while feeling connected to their communities,” she says. “Anytime someone has to make a diet change, it can be stressful and bewildering.”
A livestock farmer, DeVault must also be cautious when working cattle or visiting sale barns. Poor ventilation has triggered anaphylaxis symptoms.
In addition to farming, DeVault is an agricultural instructor at Hart Career Center in Mexico, where he serves as the FBMA instructor and adviser for the Mexico Young Farmers. He is a 1999 graduate of MU’s agricultural systems management program and earned a master’s degree in education administration from William Woods University.
He and his wife, Dr. Treena DeVault, a veterinarian, have owned and operated the Mexico Animal Hospital since 2007. She is a 2003 graduate of MU’s College of Veterinary Medicine.
Currently, there is no required reporting of AGS within state medical systems, so it is unknown how many Missourians are affected. A 2023 paper suggests there may be as many as 450,000 people in the United States with AGS.
Results from MU Extension’s AGS survey will help shape educational materials and outreach programs. To participate in the MU Extension Needs Assessment Survey, visit muext.us/AGSsurvey. Programs begin this fall throughout the state. Find upcoming events at muext.us/AGSevents.
MU Extension also collaborates with Kansas State University and Arkansas State University to study AGS throughout the Midwest