Food Allergy Exclusionism
There’s a silent problem in the food allergy community.
A lot of people occasionally wake up at night and browse the Internet before sleep returns. Last night a news story that ought to have been encouraging, instead left me sharing it with this anxious comment.
2 am insomnia worry: ordinance billed as nation’s strictest offers zero protection for my diagnosis. It’s becoming institutionalized to throw ten percent of this community under the bus.
The news report is about Edison Township, New Jersey where a proposed law would improve allergy accommodations in the service industry. If passed, it will offer significant benefits for many food allergy sufferers. I try to share their joy each time accommodations improve.
Except people such as myself enjoy no part of the benefit.
Even worse, we’re getting written out of the conversation.
The report hails from a respectable news source and it starts out well enough.
For people with severe, potentially life-threatening food allergies, it’s a question they must face everywhere they eat: is there a potentially fatal ingredient lurking on my plate?
Yes, absolutely. I live with anaphylactic food allergies so that affects my decisions every day. Regardless of which allergen affects us, all people with a medical history of anaphylaxis experience that — or in pediatric cases their parents do.
It’s what follows in this report that becomes a problem. Emphasis added.
The ordinance, introduced recently by Edison Township Councilman Sam Joshi, would likely cause a significant overhaul in the township’s eatery industry, requiring more than 630 establishments in the town and nearly 400 catering companies outside the town to rework their menus and label all allergens for every dish and beverage they serve.
That would be wonderful.
No, it doesn’t.
Under the proposed ordinance, “allergy friendly” menus would have to note which items contain the U.S. Food and Drug Administration’s eight most common allergens: milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, soybeans — along with MSG and sulfites.
Take a look at that source link. It’s an official FDA statement and the government site states, “more than 160 foods can cause allergic reactions in people with food allergies.”
Not eight, more than 160.
Then the FDA page continues to list the eight most common allergens with a disclaimer, “These foods account for 90 percent of food allergic reactions,” a caveat which appears nowhere in the news report.
Sooooo…what happens to the other ten percent?
We get nothing except an insinuation that we shouldn’t exist.
Look, nobody wants this predicament less than the people who endure it. For the past four years I’ve been offering to become a research subject except no research team has been conducting so much as a Phase I clinical trial in oral immunotherapy for anaphylactic Oral Allergy Syndrome. Treatment is not an option, not even on an experimental basis.
The only safe way to manage a life threatening immune response to any of the more than 150 other foods is complete avoidance.
I realize that isn’t easy to accommodate. I’m a reasonable person.
There’s one thing you can do, bottom line, bare minimum: admit we exist.
That isn’t too much to ask.
Awareness matters. If there’s any doubt why it matters, review the articles that have been published about the problem of food allergy fakery. There’s three examples from the United States, from Canada, and from Australia.
Now pause to think who bears the worst brunt of that.
Who has a real medical need but gets disbelieved? Who gets treated like a liar? Who suffers the most as a result?
Those of us who suffer anaphylaxis from rare food allergens do.
Because too few people are aware that it’s possible to need an ambulance after a trace exposure to an apple. Or to a potato. Or to mustard.
Maybe you’ve heard of that oft-cited example of a food allergy liar: the person who claims to be allergic to onions but only when they’re raw. It’s an actual diagnosis. Heat labile onion allergy is a manifestation of OAS cross-reactive with mugwort pollen.
Collectively, we have one of the few conditions that is explicitly recognized under the 2008 amendment to the Americans with Disabilities Act in which nonetheless we, the disabled, routinely get counseled not to seek accommodation because of the proliferation of liars who pretend at our diagnosis.
The very first step in correcting that problem is is to acknowledge it exists.
I’m glad to see advances for the majority of food anaphylaxis sufferers. I really am. I support their needs because I know in tangible ways how much a potentially deadly allergy affects every day of one’s life. I walk that walk too.
I do wish that a step forward for them didn’t translate into a step backward for the most underserved segment of the community. That doesn’t need to happen.
We can do better.
If you’re reading this post and you’re thinking That’s me! or That’s someone I know! then there is a resource available. Two years ago I started the Facebook group Rare Food Allergy Anaphylaxis for people whose potentially deadly food allergies slip through the cracks of food labeling laws. We pool information on evidence-based approaches such as double blind placebo-controlled food challenges for diagnosis.
If you’re reading this post and you’re in the media, take a few words to acknowledge our existence the next time you cover food allergies. And please, do better than a thought-terminating cliche such as You can be allergic to anything. “Allergic” is a broad term that can apply to anything from a minor rash to cardiac arrest. That sweeping phrase doesn’t improve public awareness for those of us who are at risk of aspirating our own vomit after a cross-contact exposure with a less-common diagnosis.
Take that extra sentence or two and clarify the situation. Define what anaphylaxis is and tell your audience that people can suffer a life-threatening immune response from many other foods. Because we do.