Alpha-Gal Syndrome Is More than Meats the IgE: A Patient Survey of Symptoms, Diagnosis, and Burdens

Background/Objectives: Alpha-gal syndrome (AGS) is an allergic condition that results in delayed symptoms in response to exposure to mammalian products. There is limited research on which healthcare professionals (HCPs) are diagnosing AGS, types of symptoms, time to reactions, and products that induce allergic responses in AGS. This survey study aimed to further identify the patient journey and characterize reactions for people with AGS. Methods: Adult patients with HCP-diagnosed AGS took a survey offered through social media and support organizations. Questions included diagnosing HCP type, time from exposure to symptom onset, and type of symptoms by body system. Results: Survey participants (n = 3437) were mostly white (95.8%) and female (81.5%), ranging from 18 to 86 years old, with a mean time from onset to diagnosis of 4.3 years. Most were diagnosed by an allergist (53.6%) or primary care doctor (30.7%). Participants reported gastrointestinal (86.2%), skin (83.5%), respiratory (59.8%), cardiovascular (41.3%), emotional (38.2%), motor (23.7%), and nervous system (23.3%) symptoms. Symptoms were most often reported at 4–6 h post-exposure (49.8%) and 6–8 h (28.6%), with a range from 0 min to 8+ hours. Products eliciting reactions included mammalian products (beef 97.7%, pork 87.2%, dairy 66.9%, gelatin 61.3%), prescription (41.3%) or over-the-counter medications (36.4%), and personal care products (42.0%). Most participants managed their reactions at home, and without epinephrine. Conclusions: This study demonstrates that patients with AGS may experience symptoms due to exposures from mammalian meat and a broad range of mammalian ingredient-containing products, including medications, personal care products, and dairy, with a wide range of body systems impacted. These results may be useful for educating patients and healthcare professionals to improve the accuracy and speed of AGS diagnosis.