Increasingly, food allergy parenting groups online are taking a page from anti-vaxxers and promoting conspiracies and medically dubious advice. For parents with allergic kids, it's disorienting — and dangerous.
In one photo, the baby’s head is turned away from the camera, as someone holds his arm up to show the pink area on his back. In another, a cluster of red bumps ring the area where the baby’s arm and back meet, and a third, of the child’s chest, shows what looks like a bumpy red rash near the belly button.
“Hi all — does this look like an allergic reaction?” asks the poster in a Facebook allergy parent group.
“Have you tried a naturopath or chiropractor? And adding probiotics and vitamin D to hid [sic] diet?” reads one response.
You might think this social media post, presented by Dr. David Stukus to a room full of experts at the annual meeting of the American College of Allergy, Asthma, and Immunology, would cause an uproar. Why would a parent turn to Facebook with such a severe reaction? Who has the nerve to respond as an expert and give such misguided advice? Instead, the post elicits familiar groans. “Every single person I talked to after my presentation has seen this in his or her practice,” says Stukus, an associate professor of pediatrics and associate director of the Pediatric Allergy & Immunology Fellowship Program at The Ohio State University College of Medicine. But what’s a room full of immunologists to do? Fighting promises of quick fixes with clear science has always been an uphill battle when it comes to the health of kids. Increasingly, parents of kids with food allergies have seen this first-hand, thanks to the rise of parenting groups who are taking a page from anti-vaxxers and offering medically dubious advice and promoting conspiracies. For worried parents, it’s disorienting — and dangerous. Fortunately, experts are speaking up, looking to nip this trend in the bud before it does real, extensive harm.
The fact is that there is no “cure” for food allergies, which affect more than 4 million kids, or 5 percent of children in the U.S.
If parents believed everything they read online about food allergies, they’d worry that smelly feces could signal a gluten intolerance. They’d shell out $250 for at-home food allergy tests and would ban charcoal briquettes from their grills. They’d think a “detoxifying” elixir might “cure” allergies and that the body can “reverse” allergies with the help of vitamin B5, probiotics and “crystallized sulfur.” They’d make a child having an anaphylactic allergic reaction drink activated charcoal and hope for the best. They would blame the government for the rise of peanut allergies among kids because they started putting peanut oil in vaccines in the 1960s.
Many parents of kids with food allergies correctly understand that there’s no scientific evidence supporting the above claims. But a sizable portion missed the lessons and are all too happy to share unsubstantiated clickbait containing dubious health claims via myriad online podiums that offer the misinformed a megaphone. Countless Facebook groups for allergy parents have cropped up, many of which have tens of thousands of members. People offer anecdotal advice on allergy blogs and YouTube videos, and, to a lesser degree, on allergy-related Instagram accounts (there are more than 50,000 Instagram posts with the tag #allergymom.).
The fact is that there is no “cure” for food allergies, which affect more than 4 million kids, or 5 percent of children in the U.S., according to the Asthma and Allergy Foundation of America. And although the Food and Drug Administration is close to approving a new peanut allergy treatment, currently, the only available treatments for food allergies are avoiding the allergens and possibly medication and immunotherapy. Sadly, however, many parents get their hopes up chasing spurious and often expensive allergy fixes discouraged by their allergists and that turn out to be useless.
It’s not just well-meaning but misinformed parents spreading bad food allergy advice. Irresponsible bloggers and companies selling supplements, herbs, treatment programs, DIY allergy tests and chiropractic services based on junk science prey on parents dealing with the anxiety-inducing new world of severe child food allergies. In addition, even well-informed parents might sometimes click on a promise of some new treatment or remedy that at best is a waste of time and at worst, could lead to dangerous medical decisions affecting their child’s health.
One Facebook allergy group member, a father of a 15-month-old son who has an anaphylactic allergic reaction to sesame seeds, peanuts, cashew nuts, and pistachios, offered his story as evidence: “I’m pretty skeptical,” says the man who asked to remain anonymous. He and his wife follow the doctor’s instructions and do their own research when it comes to allergy treatments or restaurant menu tips they read online. A lot of that research starts for them in Facebook groups for allergy parents which sometimes offer well-cited information that they then verify. But there are also plenty of too-good-to-be-true posts and ads that, he admits, can be hard to resist. “I have to say, as a dad with an allergic son, I really wish I could believe the headlines and wish I could think ‘Oh, he’s going to be OK, they’ve found a cure.’ Since allergies are still somewhat a science mystery,” he says, “it’s ripe territory for clickbait and false information posing as ‘science.’”
“This is what fortune-tellers do: they cast a wide net until they find something that may have some application to somebody’s life and go with it.”
It’s no surprise that parents are vulnerable targets for all sorts of allergy quackery. It’s difficult enough to keep kids safe as they navigate the world but can be overwhelming having to worry that a piece of cake containing hidden allergens at a birthday party might kill them. But the volume of targeting this vulnerable population is subject to from modern-day snake-oil salesmen is shocking.
Stukus studied six years’ worth of allergy-related posts on social media and presented his findings at the American College of Allergy, Asthma & Immunology annual meeting in October. What he saw was alarming, he says, and no surprise to any of his colleagues at the meeting.
“There are companies as well as different types of medical providers that deliberately target the food allergy community and peddle pseudoscience as a way to make a profit for their services, such as home food allergy sensitivity testing, which is not an accurate way to diagnose anything,” he says.
One branch of quackery aimed at food allergy parents involves dubious means of diagnosing food allergies, such as chiropractic adjustments, muscle testing, and hair analysis, Stukus says. Websites peddling food allergy home tests often are loose with the terms “allergy” and “sensitivity” and use them interchangeably, even though food allergies and food intolerances are wildly different things. (Stukus goes so far as to say food sensitivities aren’t real.)
“These bogus online [food intolerance] quizzes basically keep asking about every common symptom until you say yes,” Stukus says. “This is what fortune-tellers do: they cast a wide net until they find something that may have some application to somebody’s life and go with it.”
More alarming than persuading someone that they have a nonexistent food allergy, however, is that allergy misinformation can feed a mistrust of mainstream medicine that can endanger kids’ health. Some Facebook and YouTube videos feature doctors of chiropractic or alternative medicine offering advice that “your traditional allergists won’t tell you,” or point out that “avoidance of an allergen isn’t a cure” and frame their dangerous or useless remedy as more proactive than recommendations from a board-certified allergist.
Scrolling through the comments on some of these videos reveals viewers who enthuse that the advice in the video saved them a trip to the doctor for a diagnosis or ask for a virtual diagnosis of an allergic reaction. Describing “big red bleeding bumps, sharp stomach pains and ‘swells’” around their lips, a sufferer on one video commented, “…I was just wondering if I should go to the doctor or I should just put cream on it and hope for the best.”
“The lack of an effective cure means that we’re a big, ripe target for every medical quack and health scammer out there, including the anti-vaxxers.”
The prevalence of food allergies among children has increased, and speculation about the reasons for the spike veers into conspiracy-theory territory with, perhaps unsurprisingly, some crossover from the anti-vaxxer movement.
Heated arguments abound in the parent allergy community over the theory that the government began adding peanut oil to vaccines decades ago and is to blame for the increase in peanut allergies in children. This is a debunked claim that even some anti-vaxxers say is false. Yet many parents believe it and might not vaccinate their children for fear they’ll develop a life-threatening peanut allergy.
“If not getting vaccinated prevented food allergies then unvaccinated kids should not have food allergies, but they do,” says Melanie Carver, vice president of community health services and marketing for the Asthma and Allergy Foundation of America. Delaying vaccination because of a fear of allergies poses health risks to children, she says.
“The lack of an effective cure (as opposed to a few treatments still in development), means that we’re a big, ripe target for every medical quack and health scammer out there, including the anti-vaxxers,” says Laurel, an author of an allergy blog and member of several Facebook groups for allergy parents who asked to remain anonymous. Laurel says she recently was kicked out of an allergy group after flagging an anti-vax post to a mod. It turned out that the anti-vax poster was the moderator, and Laurel was booted.
The hundreds, if not thousands, of Facebook groups for allergy parents, vary widely in terms of the quality of information and how well they’re policed for misleading and dangerous posts, Laurel says. Plenty of good, responsible Facebook groups and blogs help parents understand scientific studies related to allergies. Allergy parents are often anxious and overwhelmed, and the support they can get online from other parents who understand what they’re going through can be invaluable.
But gauging the reliability of Facebook allergy groups is time-consuming. In general, it’s safer to think of social media as one step in evidence-gathering about allergies and evaluate each article about a study or tip about allergy-free restaurant independently, says Nicole Smith, a longtime allergy parent blogger in Colorado Springs, Colorado.
“If anything is claimed to be a cure, run in the opposite direction,” Smith says. Parents need to be cautious and discuss even innocuous-seeming herbal supplements with their child’s allergist before trying them, she says, “because you don’t know what else could be in one that could set off the system.”
Instead of looking at blogs and less reliable information portals, turn to nonprofit or medical society resources for parents such as FARE, the AAAI and the ACAAI, recommends allergy researcher Thomas Casale, MD, former head of the ACAAI and professor of pediatrics at the University of South Florida.
Remember that allergies are so individual that your child’s allergist will always be the most informed source of information. Keep a file of research, remedies, and recommendations you see online and bring the list to appointments to discuss with your allergist. They know your child and are a better source of information than a stranger with a kid whose condition could have little bearing on your child’s condition.
“It’s dangerous to take another person’s online anecdote and apply it to your own situation, not recognizing there are many nuances never discussed that can vastly impact whether the anecdote even applies to [your child],” Stukus says.
“The scariest part of all this is people with a child who’s having active symptoms and posts a picture of a rash asking their group, ‘What should I do?’ And other people with no training whatsoever offer their opinions,” he continues. “That’s how I see someone might die, and that really scares the hell out of me.”
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