Allergy patients who’ve researched their symptoms on social media might form an expectation of what their diagnosis and treatment should be, but they have a good chance of being wrong, according to experts.

Rather than scolding patients, experts say keeping an open mind and asking patients what information they have and where they found it can help strengthen the therapeutic alliance and achieve positive clinical outcomes.

For example, last year TikTok food allergy influencer, Claire Fuller posted a video of herself going into anaphylactic shock while driving and choosing to take an antihistamine, which is not standard care, instead of using her epinephrine auto-injector, saying it was “bad for my heart.”

In the video, she does eventually use her auto-injector, but backlash from the video later prompted Fuller to claim her intent had been to demonstrate how dangerous not using epinephrine for anaphylaxis can be.

Debunking these myths can be critical for some patients, said Robyn Liu, MD, MPH, but “it’s important to hear them out before jumping in with corrections. Once I understand my patient’s true concerns, my job as their physician is to provide accurate, science-backed information.” Liu is a board director for the American Academy of Family Physicians and a family physician in Portland, Oregon.

Top Online Allergy Myths

A recent study published in the Journal of Allergy and Clinical Immunology in Practice examined allergy misinformation across social media platforms and found that the most common myths were to do with natural cures such as honey for pollen allergies (31%), followed by endorsements of immunoglobulin G (IgG) testing (24%) and fearmongering over allopathic treatments (18%). Bad food allergy advice (16%) and pharmaceutical conspiracy theories (11%) rounded out the findings.

Most misleading content about allergies tends to go unchallenged, Samira Jeimy, MD, PhD, an assistant professor of medicine at Western University in London, Ontario, Canada, and her coauthors found. Of 3470 comments examined in the study, 62% were supportive or neutral toward misinformation, while over a third (38%) challenged an influencer’s claims. However, only about a quarter (23%) of rebuttals cited scientific evidence.

“Healthcare providers must anticipate IgG testing and natural remedy narratives, integrate myth-busting into counseling, and leverage society-led digital strategies to counter misinformation's influence on clinical care,” Jeimy and her coauthors wrote.

Natural Cures

Ruchi Gupta, MD, MPH, professor of pediatrics and medicine at Feinberg School of Medicine in Chicago, said patients often ask her about probiotics to treat their food allergies.

A recent review of the literature about probiotics in food allergy, published in the European Annals of Allergy and Clinical Immunology, found that probiotics have utility as an adjuvant therapy, particularly in peanut oral immunology, but there are still questions about the type of probiotic and the dose and duration of supplementation.

“Natural products can be great for overall health, but that doesn’t mean they replace medical treatment,” Gupta said. I’ll say, “Yes, you can try [probiotics], and we also have treatments for food allergy that have strong scientific evidence behind them, like oral and sublingual immunotherapy and biologics such as omalizumab.”

Another much-discussed natural treatment for allergies is honey, although studies of honey’s capacity to alleviate symptoms of allergic rhinitis have been inconclusive, according to Edwin Kim, MD, MS, who spoke with Medscape Medical News in an interview. Kim is the division chief of pediatric allergy and immunology at the University of North Carolina at Chapel Hill. 

“Honey couldn’t hurt,” he said. “When they’re having an allergic reaction, though, that is not going to help.”

Do-It-Yourself IgG tests

Patients who experience barriers to care, such as insurance policy restrictions preventing them from accessing an allergy specialist, will often take matters into their own hands, according to Kim. Similar to Ancestry DNA kits, mail-order IgG kits allow patients to test their own blood for antibodies, but there is little to no specificity, making results broad, sometimes indicating that patients are allergic to dozens of foods, he said.

Or an IgG test shows that a person is actually tolerant of a food they thought they were allergic to, confusing the patient. When that happens, Kim said the home kits often lead the patient to the doctor’s office. “They’re recognizing that this is too hard and there’s more nuance to having a conversation about allergies than there is with a computer printout.”

The ultimate test is what happens when a person eats a specific food, according to Kim. “Regardless of what any test says, if you’re eating a food and you’re fine, then you’re fine. You’ve proven it to yourself,” he said.

Discussing test results also provides an opportunity for the specialist to educate the patient on the differences between food allergies and sensitivities and for the clinician to take a hard line on epinephrine if it turns out the person has a life-threatening food allergy, said Kim. “One place where I think these myths can be harmful, and where I could be more forceful, is if patients are delaying getting the care that they actually need,” he said.

Fear of Epinephrine Auto-Injectors

Patient-facing guidance from the American Academy of Allergy, Asthma & Immunology for those experiencing anaphylaxis is to use their epinephrine injector and call 911 immediately so they can be transported to the nearest emergency department for evaluation, monitoring, and any further treatment by healthcare professionals. The guidance specifically warns against taking an antihistamine or waiting to see if symptoms get better.

Meanwhile, multiple psychological barriers exist to patients using epinephrine auto-injectors, according to a 2020 study in the Annals of Allergy, Asthma & Immunology. A common fear cited in the study is the fear of needles used either for themselves or their child.

Kim said that doctors can add to this fear by using a foreboding tone when discussing the auto-injector. “‘Only use it if things are absolutely terrible,’ they say, and then it’s this needle. So, no surprise, people don’t want to use it,” he said.

The best way to counsel patients so they comply with evidence-based medicine, according to Liu, is to develop a trusting relationship with them over time. “Because of our long-term relationships, I have the context and history to help my patients make the best decisions for their health.”

Liu reported having no relevant financial interests. Kim reported being a scientific advisory board member for ALK-Abelló, DBV Technologies, Kenota Health, and Ukko; reported consulting for AllerGenis, Allergy Therapeutics Ltd., Belhaven Pharma, Duke Clinical Research Institute, Genentech, and Nutricia; and reported receiving grant support for his institution from the National Institute of Allergy and Infectious Diseases and Food Allergy Research and Education (FARE). Gupta reported currently being employed by Ann & Robert H. Lurie Children’s Hospital of Chicago; receiving research support from the National Institutes of Health (R21 ID #AI135705, R01 ID #AI130348, and U01 ID #AI138907), FARE, Melchiorre Family Foundation, Sunshine Charitable Foundation, Novartis, and Genentech; and serving as a medical consultant/advisor for Genentech, Novartis, FARE, OWYN, Kaléo, Aquestive Therapeutics, and Bryn Pharma.