Discussion of food allergies tends to focus on children (for a lot of reasons), but a recent study found a much higher rate of food allergies among adults than expected. They found that 10.8 percent of American adults – that extrapolates to 26 million people! — reported a convincing food allergy (based on actual symptoms reported – another 9% reported allergies, but their symptoms didn’t match the diagnosis – presumably at least some of the rest are genuine intolerances). That’s actually higher than the rate among children found by another recent study, which came up with 7.6%.

Now, my first thought on reading this was: Of course! Kids with food allergies who were counted 10, 20, 30 years ago have grown up, and we’re adults now! But it’s more than that: There’s a lot more adult-onset allergies than anyone expected to find.

The JAMA article goes into the numbers. Of those who had a convincing allergy:

  • 48% developed at least one allergy as an adult
  • 26.9% developed allergies only as an adult.
  • 53.8% developed allergies only before turning 18

More than a quarter of adults with food allergies didn’t have them as children. That’s a surprise! And it raises questions: Is there a different mechanism that triggers childhood-onset allergies vs. adult-onset? (Other than tick bites, of course.) What about those of us who had allergies already and added more? Is there some sort of saturation threshold?

There are still a lot of unknowns about food allergies. But we do know that they can be deadly serious, and they affect a lot of people.

If you have environmental allergies to pollen, dust, animals, etc. you’ve long had the option of taking shots to desensitize yourself to the allergen. That hasn’t been the case for food allergies. But a pollen allergy is a lot less likely to kill you than a nut allergy. Some sort of treatment beyond “try not to eat it, and use epinephrine if you do” has been sought after for a long time.

Various forms of oral immunotherapy (OIT, SLIT) for desensitization have been under study for a few years…along with an injected medication that takes a different approach.

Around 10-15 years ago, my allergist at the time brought up the possibility of Xolair (omalizumab) for my asthma, suggesting it might also help with my food allergies. It’s an IgE inhibitor, which means it blocks the pathway through which food allergies operate. In theory, it would reduce my chances (or reduce the intensity) of a severe reaction to an accidental exposure.

It was an unproven, off-label use. Xolair had only been studied and approved for treating asthma, primarily asthma that other medication couldn’t control. And it would mean regular shots. And staying in the office after each one to make sure I didn’t have a reaction to the shot itself.

Ultimately I decided not to take her up on it. It seemed like more trouble than I wanted to go to for an uncertain gain. My experience wouldn’t have even helped clarify that gain. Any close calls I missed would have just been another anecdote, the medication’s impact unproven.

A decade and a bunch of clinical trials later (some alone, some in combination with OIT), the FDA has given Xolair a “breakthrough therapy designation” for treating food allergies. That means fast-tracking further reviews and development as a treatment. (more detailed article.)

There’s still risk/benefit analysis to do (in general and on a case by case basis), but things are starting to finally look up in terms of being able to treat the condition instead of trying to detour around it!

OK, this is a bit morbid, but bear with me.

Most news stories about deaths from food allergies feature children or teenagers, maybe young adults in their twenties. You read about grieving parents. You rarely read about the 40-year-old who leaves behind a grieving spouse and kids.

Food allergies send a lot of people to the emergency room: 200,000 annually in the US alone according to FARE. Almost all are successfully treated. But people do die from anaphylaxis, roughly 63–99 each year in the US according to AAAAI.

So why are the fatalities we hear about so young?

Is it just demographics? Allergy prevalence has been increasing, after all, so kids are more likely to have food allergies than adults are.

Newsworthiness? A three-year-old dying at day care tugs at the heartstrings in a way that a 38-year-old dying from takeout doesn’t.

Is it onset age? A reaction is more likely to kill you if you don’t know about the allergy yet, don’t know you need to carry epinephrine, and don’t know that the warning signs mean “hospital now!” and not just “lie down and try to get through the asthma attack.” By the time you’re an adult, you’ve probably already encountered everything you might be allergic to, so you’re less likely to get that surprise first reaction. It happens – I’ve known people who developed shellfish allergies as adults, and I found my own nut and peanut allergies expanding their range in my early 20s – and there’s the Lone Star tick – but it’s less likely.

Are adults more careful? Teenagers take more risks. Children often have to rely on secondary caregivers who don’t always have the training or understanding that their parents do. And of course, the longer you deal with something, the more it becomes second nature. Is it that we’ve gotten better at avoiding triggers, keeping our medication on hand, and seeking treatment faster?

Are you more likely to have died of something else in the meantime? According to one NIH study, “Fatal food anaphylaxis for a food-allergic person is rarer than accidental death in the general population.” So the longer you live, as long as you’re taking precautions with the allergy, chances are that something else will kill you before the allergy can.

I suspect all of these are factors, but I do wonder how they balance.

If you are told a child in your care has a severe food allergy, believe them. Don’t kill a three-year-old with a grilled cheese sandwich.

According to his parents, staff at the preschool knew about his severe dairy allergy, but an adult gave him the cheese sandwich anyway. He ate it, went into anaphylactic shock, and died in the emergency room. No word on whether they gave him epinephrine. (New York law allows schools to stock it, but doesn’t require them to.) Update: Apparently the school called his mother instead of 911. Want to bet paramedics could have helped?

“We will get to the bottom of what happened here…” says a spokesman for NYC’s health department, “and whether the facility could have done something differently to prevent this tragedy.” Well, yeah: Don’t give kids food that you know they’re severely allergic to!

Children with severe allergies know to avoid certain foods, but they need help to do it:

  • It takes time to learn how to avoid all forms of food you’re allergic to. I was seventeen before I learned that cross-hatches meant peanut butter cookies, because we’d never had them in the house. (Incidentally: that was the first time I actually used an Epi-Pen.)
  • Some foods have substitutes that look and taste similar enough that you could take a bite — and it only takes one bite — before discovering it’s the real thing. Sunflower seed butter for peanut butter. Daiya for cheese (and yes, you can make a grilled Daiya sandwich).
  • Ingredients can be hidden. There are an awful lot of pasta sauces that look like standard tomato sauce with herbs that also have cheese in them.
  • Kids that young have no choice but to trust the adults taking care of them. There’s a power difference. If you trust someone, you’re less likely to double-check them. And when you’re not sure? Not all kids can push back against an insistent adult, especially one they’re accustomed to depending on. (Keep that issue of power imbalance in mind when you read other stories in the news today, too.)
  • Preschoolers aren’t exactly known for their impulse control, so even the ones who have the courage to self-advocate won’t always stop to check before taking that first bite.

Maybe it was someone new who didn’t know yet. Maybe it was someone who didn’t take it seriously. Maybe there was a mix-up and he was supposed to get something else, but they handed him the cheese sandwich by mistake. All of those could have been prevented.

Yes, mistakes happen. Even fatal ones. But they happen a lot less often when you listen to people who are facing the danger, believe them, and take action to follow through on it.

1 in 13 children has a food allergy. Even if your child doesn’t, they have friends who do.

Don’t let them down.

Update on the case from Allergic Living (Nov 16):

The incident is still under investigation. It’s not even clear at this point whether the specific person who gave him the sandwich was aware of the allergy (though they certainly should have been), or whether they gave him epinephrine, though it is clear that:

  • The school was aware of his allergy
  • The school didn’t call 911, they called his mother instead.

The school has been closed pending the investigation results, and new directives have been issued that childcare staff will call 911 in the event of a medical emergency.

Another update from Allergic Living (May 2018):

  • The preschool didn’t tell Elijah’s mother that he’d eaten, so she thought he was experiencing an asthma attack. (This is also how I interpreted my first anaphylaxis experience at 17: as an asthma attack that didn’t respond to my normal medication. I didn’t know it at the time, but I could have died.) He didn’t get epinephrine right away, which might have saved him.
  • NYC has launched a major training program to help preschool staff understand and handle food allergies and anaphylaxis.
  • Elijah’s parents have been active in raising awareness of severe allergies in the community and online.

I’ve been thinking a lot about Robert J. Sawyer’s Quantum Night the last few months. It links human cruelty, psychopathy, and mob behavior to the nature of consciousness, mostly focusing on the main characters but playing out against a global crisis brought on by a rising tide of xenophobia.

More recently, I’ve been thinking about Frameshift. His 1997 novel deals with (among other things) eugenics, Neanderthals, Nazis, and health insurance companies doing everything they can to avoid covering people with pre-existing conditions.

I can’t imagine why that keeps coming to mind….