My adult son has been going out to eat more frequently, trying out new restaurants with his friends. In early December he mentioned that he wonders if he’s even allergic anymore.
His last reaction was when he was a sophomore in college and that was more than six years ago on a family ski trip. But time passes and takes the edge off bad experiences. He’s forgotten the fear and uncertainty surrounding his brush with anaphylaxis and the night in the ER.
On Christmas Eve, we celebrate with a seven fish dinner—a tradition from my husband’s Italian heritage. It’s fish-everything that night, from appetizers to the main course (though we draw the line at dessert! LOL) You’d be surprised how challenging it can be sometimes to hit that magic number SEVEN and preparing the feast is a family labor of love.
On Christmas Eve we'd enjoyed an amazing spread of appetizers and were sitting down for the main course(s) when my son said,
“Mom, my lips feel funny. Do they look swollen?” He’d just taken a bite of homemade grilled octopus, a dish he’d eaten many times before.
I couldn’t really see the lip swelling he was feeling and there were no hives or any other symptoms I could see.
He's Still Allergic
My heart sank. How could this be?
I scrambled for an antihistamine. It’d been so long since he’d had a reaction we’d grown lax keeping up-to-date antihistamines in the house. I finally found a Zyrtec tablet for him.
He disappeared into the bathroom and when he returned he reported he’d thrown up. He told us he felt much better. An hour or so later he declared himself hungry, ready to sample dessert though we advised giving it more time.
We continued to observe him closely, ready to use his AUVI-Q, for the rest of the evening — our festivities a bit dented to be sure. Fortunately, he was fine. This time.
Lost in The Gray Zone
The incident cycled on an endless loop in my head that night and for days after as I puzzled over the reaction trigger, deep in the allergy 'gray zone'. We'd reviewed everything we served for allergen content and he’d safely eaten all the foods we served before. We’d read and re-read and scanned labels before adding a food to the holiday menu. There was no chance of cross contact in our home because we don’t bring peanuts or eggs into it. We racked our brains trying to figure out the cause:
Was it the grilled octopus? It was purchased frozen from our local go-to store for fish. Sourced from Portugal. The label warned it contained shellfish. Nothing more. Could undisclosed egg white have been used as a tenderizer when it was frozen?
Was it the tinned sardines from Spain, packed in olive oil and preserved lemon? Or the tinned tuna or the smoked mackerel, both packed in olive oil? Could there have been undisclosed egg in their ingredients?
All the assorted crackers we’d served, he’d eaten safely before. Had something changed in the way they were manufactured? The labels read ok for him. Were the labels accurate?
The artisan sourdough loaf we bought from our go-to bakery that’s accustomed to handling our allergy orders with extra care – had they overlooked something in the crush of holiday orders? Perhaps forgetting to change their gloves when assembling our order?
He’d had a sip of champagne. Long ago he had reacted with GI symptoms to a sip of Italian red wine that, unbeknownst to us, had been fined with egg whites that were still present in trace amounts in the sediment. Was there something in the way champagne’s processed that we were missing…that could pose a risk?
He’d eaten octopus and other shellfish (Clams, Mussels, Shrimp, Lobster, Langoustine) previously, recently (& frequently) with no problem. Was it an out-of-the blue adult onset food allergy?
We dug the discarded tins and other packaging out of the trash bin to re-read labels, yet again. We went to the manufacturer websites. We couldn't call manufacturers until after Christmas Day. No insights. No answers.
A complete mystery. A worrisome mystery.
But some blessings (if you can call them that) too?
A Crystal Clear Wake-up Call
It was a loud and rude wake-up for him (& us) that YES, he’s definitely still allergic and he needs to continue to exercise caution as he navigates life. Allergens can hide even though you do everything in your power to vet and verify the allergen-status of a food you want to eat. Read, read, read labels. Call manufacturers when you can. Visit manufacturer websites. Explain your allergies ad infinitum to people who will prepare and serve you food. Keep up-to-date antihistamines and epinephrine within reach, ready to use. Train your friends on using your auto-injector.
A Catalyst to Pursue Allergy Treatment
The Christmas Eve mishap may help me finally convince him to pursue a baked egg challenge and consider peanut OIT by adding indisputable evidence of ‘need’ to my persuasive arsenal.
I’ve been, as allergy moms tend to do, ‘nagging’ at him to find a new (adult) allergist and get updated testing for peanut, green pea, lentil, and chickpeas. Perhaps he should get tested for shellfish, too?
As a parent, you can push, plead, cajole all you want, but when your child’s an adult, it’s their choice, their decision. You need to respect that. Even if you don’t like it.
But, lack of manufacturer transparency and manufacturer mistakes make people with food allergies extremely vulnerable. You can only control what you can control. The January 2024 Órla Baxendale tragedy has added urgency to my efforts to convince my son to seek out a new allergy practice and follow through on testing and treatment if feasible. Even if he's on the older side of the age-curve, today there are so many treatment options that didn’t exist when he was a teen.
We have hope…
Now we just have to get the buy-in…
“A child may outgrow your lap, but they will never outgrow your heart.”
—Unknown
Postscript: In March, our son had a similar allergic reaction after eating fresh tuna purchased from the same store we'd purchased the octopus from in December. We definitely know he is not allergic to finned fish. Could it be cross contact with mayo-based seafood salads being prepared in the store's fish department? Could it be something added to the fish to maintain its freshness? We are in touch with the store seeking answers, but no answers as of the publication date of this post. Again, we're stuck in the gray zone of allergic life.
Recently, an advocacy non-profit — Allergy Strong founded by Erin Malawar — shared a link where consumers can report allergic/adverse reactions from mislabeled foods to the FDA. Please report any reactions involving mislabeled foods to the FDA so they have the evidence-based insights they need to improve food labeling for allergic US consumers.
About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. Her professional and personal experiences fuel her passion for creating tools for people with food allergies. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
Image: Donald Giannatti on Unsplash, Cottonbro Studio on Pexels, and Allergy Force on Canva