Diagnosis of Life-Threatening Alpha-Gal Food Allergy Appears to Be Patient Driven

Abstract

Objective: Patients exhibiting life-threatening symptoms associated with the alpha-gal food allergy (delayed urticaria or anaphylaxis due to mammalian meat) are frequently undiagnosed, causing unnecessary emergency department (ED) and health care visits, and extensive pain and suffering. This study aimed to determine the path to diagnosis experienced by alpha-gal patients. Methods: Semistructured interviews were conducted from March to June 2016 with a chronological systematic sample of approximately 10% of patients diagnosed with alpha-gal and treated by the University of North Carolina Allergy and Immunology Clinic (n = 28). Main outcome measures included average length of time between first symptoms’ appearance and diagnosis, number and type of health care encounters en route to diagnosis, and typical symptom severity. Results: Six interviewees (21%) were diagnosed within a year of experiencing symptoms, of the remaining 22, mean time to diagnosis was 7.1 years. In over 100 medical encounters (including 28 ED visits and 2 urgent care) the correct diagnosis or effective diagnosing referral occurred less than 10% of the time. Seventy-one percent (20/28) described their first symptoms as severe. More patients found the allergist specializing in this condition on their own (n = 12; 43%) than those who were formally diagnosed or received referrals (n = 10; 36%) through the health care system. Conclusions: The medical community is challenged to stay abreast of emerging and newly uncovered illnesses through traditional medical literature communication channels. Presently, patients more often discover a diagnosis of alpha-gal allergy by using information resources on their own than by presenting to the ED with anaphylaxis.

Alpha-gal antibody due to Lone Star tick bite, a unique case of allergic reaction

“…The patient’s occupation likely predisposed him to tick bites during his fieldwork. Typical food allergies arise immediately after consumption; however, alpha-gal reactions time of onset can range from 3−6 hours after ingestion to weeks later [ 5 ]. The temporal relationship between meat ingestion and onset of an allergic reaction is patient driven.…”

“…Their study found that while six patients were diagnosed within one year of symptoms, the remaining patients average time to diagnosis was seven years. Prolonged time to diagnosis and symptoms inevitably lead to not only patient and family frustration, but also a significant amount of health care utility spent in the primary care office as well as acute care settings including urgent care and emergency departments [ 5 ]. Tick-borne induced red meat allergy is an emerging diagnosis.…”

Mammalian meat allergy following a tick bite: a case report

“…This allergy has proven its ability to elicit powerful and potentially lethal reactions including anaphylactic shock, yet it is commonly misdiagnosed or determined to be idiopathic in origin. A recent study reports that only 21% of patients are diagnosed within a year of experiencing symptoms and a mean time to diagnosis of 7.1 years [ 3 ].…”

“…These ticks are common in the southeastern region of the country. Although the prevalence of the alpha-gal allergy is drastically increasing and severe reactions leading to anaphylactic shock can occur [ 2 ], this condition is rarely recognized and a mean time of 7.1 years to diagnosis was found in 2017 [ 3 ]. Delayed diagnosis of an allergy that has proven to elicit such potent reactions is exceptionally dangerous.…”

Patients’ Health Information Practices and Perceptions of Provider Knowledge in the Case of the Newly Discovered Alpha-gal Food Allergy

“…A prospective study of 70 patients with idiopathic anaphylaxis found 9% of patients tested positively for alpha-gal (29). Patients report allergic reactions with repeated emergency room visits, late at night, or in the early hours of the morning (23). Thus, some patients who might not otherwise engage in health information seeking are highly motivated to discover the cause of their illness.…”