Tag: Food Allergy

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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!

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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.

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Silly as it sounds to recall nuts for undeclared nuts, not all nuts are the same.

If you’re allergic to cashews but not pecans, you want to know whether the pecans you might eat have come in contact with cashews. And that’s not even getting into the peanut/tree nut difference!

In this case [Edit: link broken], a process breakdown at a roaster opened up everything to cross-contamination by every other kind of nut they sell. They’re recalling affected lots while they fix the problem.

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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.

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Today I joined hundreds of people at the CBS Studios in Los Angeles to raise money for Food Allergy Research and Education through the FARE Walk for Food Allergy.

We skipped last year and decided to join this year’s event at the last minute. Rather than walking along the shore at Long Beach, this year’s course ran through the CBS Studios lot. It started on what looked like a suburban New England street, and wound past production trailers, soundstages, prop storage, and even the Los Angeles river….

Lots of people walking along a path above a wide concrete-lined trench. Trees on either side, blue sky beyond.

…such as it is. Other parts of the river are much nicer, even navigable at times, but this stretch is basically a concrete drainage ditch inside a bigger drainage ditch. It looks bleak now, but during flood years the channels fill completely, preventing the city’s streets from flooding instead.

Wait, Walk for What–Who–Why?

FARE funds studies to explore the causes of food allergy and develop new therapies. They run outreach programs to make it safer to visit restaurants, or just be at school or the workplace.

Food allergies can range from mild to life-threatening — yes, people die — and those of us on the far end of the range need to be constantly on the watch for hidden ingredients and cross-contact between foods we can eat and foods we can’t.

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