Spilling on Milk Allergy: 3 Families on Life With the “Toughest Allergen”

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in Food Allergy, Milk & Egg
Published: January 29, 2020

It’s often called the toughest food allergy, since dairy is in everything. Meet 3 families facing the challenge – and thriving.

Drew Huddleston’s family was vacationing in Alaska, and they’d just stopped at a grocery store for snacks. On the way back to their hotel, he ripped open a bag of salt-and-vinegar potato chips. 

Moments later, the teenager felt a familiar tingling in his mouth and throat. The culprit? Buttermilk. He had picked up the brand’s kettle chips, instead of the regular variety he’d eaten many times before. As someone with milk allergy, he immediately regretted not checking the ingredients label, as is his habit.

Drew quickly took an antihistamine, and his mom Janet Huddleston sat with him until the fairly mild symptoms were under control. He knew he was lucky it wasn’t more severe, and the August 2016 incident was a stark reminder of the dangers lurking for someone with milk allergy. “You never know when milk is going to pop up in a food,” the now-10th grader attests.

All food allergies require vigilance. But time and time again, the editors at Allergic Living have heard that milk allergy poses an extra burden as families try to safely navigate the world. However, these challenges are often met with creative, resourceful solutions – as the stories of three milk allergy families make clear.

Drew’s Way: Navigating a Teen Job Challenge
At the local movie theater where Drew works, he's able to avoid cleaning equipment where milk has been.
Drew works at a local movie
theater and his manager lets him
avoid cleaning equipment
where milk has been.

At 16, Drew doesn’t know a life without food allergies. Milk came first, discovered when Janet fed him formula at three months. Testing would later confirm additional allergies to peanuts, tree nuts, fish, shellfish and egg, plus environmental allergies and asthma. 

Yet Drew’s milk allergy remains the most difficult to manage. He has to think twice about hanging out at Starbucks with friends – the airborne proteins from frothed milk can trigger his asthma. Even a drop against his skin will prompt a contact reaction.

That last fact posed a problem when Drew landed his first after-school job at the Tull Family Theater in their hometown of Sewickley, Pennsylvania. What better gig for a self-professed musical theater fan and budding film critic? Drew felt comfortable handling melted butter for the popcorn, after testing it on his skin with the allergist. But chocolate milk and hot chocolate were another story. 

“We were really worried when he got this job,” admits Janet, an art therapist. “But he spoke up. That’s a hard thing for a kid to ask for.”

The theater managers were happy to accommodate Drew’s request to avoid cleaning out any kitchen equipment where milk had been. And he keeps medication in his pocket at all times, just in case. 

With most restaurants deemed too risky, Janet’s travel strategy is to embrace home cooking away from home. Huddleston family vacations mean finding a place with a kitchen so Janet, her husband Tom, Drew and 14-year-old Grant can enjoy sit-down dinners.

The hardest trip by far was to an all-inclusive Mexican resort for a wedding. Janet made slow-cooker meals for her eldest back in their hotel room, and a translation app helped with the Spanish food labels. “It’s difficult, but it works for us,” she says.

Drew is quick to point out that he leads a full and very typical teenage life. He has his driver’s license and stays busy with his job, rowing team and school newspaper. 

“There are not too many things he wants to do that he can’t,” says Janet proudly. “Drew’s a really happy kid, despite these challenges. And that motivates me.”

Cooking With Zane: A Recipe For Understanding His Allergy
Zane in his kitchen.
Zane loves to cook and even shares
YouTube videos of his recipes.

Explaining milk allergy requires an extra dose of patience, says Kourtney Brumfield of Riverside, California.

People tend to forget that dairy creeps up in countless common foods, from baked goods to ranch dressing. She answers question after question until they realize the full scope of what her son faces. (Her personal favorite: “How about organic milk?”)

Nine-year-old Zane Jamerson is also allergic to egg, peanuts and tree nuts; he outgrew allergies to wheat and soy. But milk has posed the most risk for accidental exposure, especially when he was in daycare. He once reacted to an activity involving shaving cream. Then there was the time a classmate tripped and splashed her cup of milk into Zane’s face and eyes. 

“Of all the kids!” exclaims Kourtney, who works as an academic adviser at a university. Both times, she got the call and rushed to school, where teachers were able to treat his hives with Benadryl. This single mom’s advice to other allergy parents? “Be very educated. Know your stuff, so you can advocate for your kid.”

Once she got past paying for Zane’s expensive hypoallergenic baby formula, Kourtney had to figure out how to feed him real food. She came across a cookbook for children with food allergies, and it turned out to be the saving grace for her and her mother, Zane’s Nana, who lives with them.

Zane has caught the cooking bug as well. Since June 2018, they have been sharing YouTube videos under the name Zane’s Teal Kitchen – teal being the official color of food allergy awareness.

Kourtney leverages her background in photography to produce the segments, but Zane is the real star, whipping up recipes that prove people with dairy and other food allergies aren’t resigned to boring food. (Magical Unicorn Donuts, anyone?)

The videos have had a positive impact, and not just with food allergy families they meet online. They’ve helped others understand that Zane’s milk allergy is as serious as his other food allergies (and no, it’s not lactose intolerance). Cooking has also given Zane confidence at a time when he was starting to notice how different he was, Kourtney explains.

“I feel more in charge of what I eat because I get to choose ingredients I know are safe for me,” says Zane. 

Kourtney hopes Zane’s Teal Kitchen will evolve into a brick-and-mortar restaurant. For now, Zane doesn’t miss what he’s never had. His mother points out that dairy-free products are getting better and better. “We focus on what he can eat. There’s no reason to feel stuck.”

Accommodating Eli: From Whole Foods to Safer School
Eli Burden.
Eli’s mom has reimagined the way
their family cooks, now rarely
buys processed foods.

For Kristen Burden, Sundays mean dinner with her husband’s extended family. But when their son was diagnosed with milk allergy, she wondered if these events would ever be the same. Sure, pizza is a convenient way to feed a 21-person crowd, but one bite could mean big trouble for Eli, whose first spoonful of yogurt sent him into anaphylaxis at 10 months. 

The Orlando mom decided to turn the cherished weekly gatherings into a “training ground.” Now she prepares a comparable meal for Eli, plating it to look like everyone else’s.

“It’s a real gift to him, giving him practice navigating big crowds and foods that are high risk. And he’s fitting right in,” Kristen says.

Eli, now 8, also has tree nut allergies, “but milk was the real showstopper. We had to reassess everything we eat,” says his mom. She dove head-first into family meal-planning (Eli is the third of Kristen and John Burden’s four children). Gone are the casseroles of her Midwestern upbringing, replaced with a whole-foods diet centered on lean protein, fruits and vegetables. She rarely buys processed foods, where dairy-based ingredients abound. 

It makes for a steep grocery bill, but the family is healthier for it. “We wouldn’t have made these changes without this diagnosis. It’s the silver lining to what could have been a very dark cloud,” says Kristen, a full-time mom who dabbles in professional photography and social media management. 

This philosophy – that Eli’s accommodations benefit the greater good – extends to the school setting.

Grade school meant a whole new world of food allergy risk, from the classroom to the cafeteria. Realizing it was up to her to help move the needle for Eli, Kristen teamed up with another milk allergy mom to work with teachers and administrators. (Because he attends a small Christian private school, Eli doesn’t have a 504 plan, the government document that outlines school accommodations for children with special needs.)

Four years in, school is a much safer place for her curious, sports-loving younger son. Students with food allergies are now grouped together; six children carry epinephrine auto-injectors in his second-grade class of 15. All the children are expected to wash hands when they enter the classroom in the morning, which lowers the risk of spreading allergens and germs. 

Birthdays also have been reimagined with food allergy safety in mind. Eli’s class follows a no-food rule that minimizes classroom interruptions. Parents take the money they would have spent on cupcakes and purchase a gift for the classroom instead. The key was taking a wider angle, Kristen says. “When I frame it around academics and sugar ingestion, it strikes a chord with many parents. Then it’s an easy battle to win.” 

These moms won’t pretend that life with milk allergy isn’t exhausting. Managing the anxiety can be an even greater challenge than the physical risk. Kristen recommends surrounding yourself with people who lift you (online, she finds moral support from the Milk Allergy Mom Facebook group). 

Eli was just green-lighted for oral immunotherapy, and Kristen is hopeful it will eventually make milk less dangerous.

In the meantime, this mantra helps her keep things in perspective: “Ultimately, it’s just food. It’s fuel to enjoy life and a vehicle for people to spend time together.” 

Related Reading:

Sidebar: Milk Allergy 101 – Dr. Sicherer on The Essential Facts
Is it Common for a Milk Allergy to Progress into a Nut Allergy?
Allergy to Peanut, Milk and Shellfish the Most Common in American Kids