I never thought that I would have to revisit this topic. After all, our society is becoming acutely aware of food allergies. But just the other day, a friend in the food allergy community said, “people don’t die from a milk allergy.” On the contrary, severe milk allergies are real. And it’s time they gain some respect.
We’ve Come So Far. Or Have We?
My first major brush with milk allergy disbelief came during a call with a certifying agency about eight years ago. They were involved in lab testing for gluten-free food certification, and thought there was a huge opportunity in dairy-free certification. I inquired about liability issues, and they stated, “that shouldn’t be a problem since milk doesn’t cause life-threatening reactions.” After hanging up the phone, I emailed Sabrina Shannon’s story to them. Sabrina was lost to a milk allergy tragedy, and her story sparked some of the first food allergy legislation. I never heard from that certifying agency again.
I later read a WebMD report on the need for better food allergy guidelines. It briefly introduced me to Matt Mitchell, a then 20 year old college student who had experienced several close calls due to a lifelong milk allergy. His emergency room visits were frequent, including one on Christmas day. He had consumed dark chocolate that was made on shared equipment with milk chocolate. In the article, Matt’s mother Lynda stated, “I call milk allergies the Rodney Dangerfield of food allergies. They don’t get the respect that peanut allergies get because most people confuse them with lactose intolerance. But just like peanuts or shellfish, a milk allergy can be life threatening.”
Lynda’s words prompted me to initially write this story seven years ago. And today, I’m bringing new life to the topic in remembrance of all who have been lost to a milk allergy. When someone doesn’t believe you, send them here. I sadly have ample proof that anaphylactic and life-threatening reactions to milk allergies are real.
Why We Must Remember that Milk Allergies are Real
Fortunately, at last check, Matt was in his mid-twenties and still speaking out for milk allergies. But not all milk allergic kids and adults have been so lucky. In the past several months, the number of milk allergy-related deaths has surpassed peanut and tree nut allergies in the news.
Sabrina’s story still brings me to tears, and now, so do these:
- Kid with Severe Dairy Allergy Died After Classmate Put Cheese Down His Shirt
- Nine-year-old English Tennis Talent Sadie Bristow from Chartham Dies after Allergic Reaction
- 3 Year Old Elijah Dies from a Grilled Cheese Sandwich at Preschool
- Dairy Allergic Nainika Dies at the Age of 9 from a Pancake
- Allergic Teenager, Chloe, Dies After Unwittingly Eating a Kebab Containing Yogurt
- Alabama Boy, 3, Dies of Severe Reaction During Baked Milk Challenge Test
- 13 Year Old Boy Died After a Severe Reaction to a Piece of Cheese Forced on Him
- Nasar Ahmed Died After Suffering a Reaction to Milk in His School Lunch
- 64 Year Old Woman Dies from an Allergic Reaction to Dairy at a Diner
These are publicized events from this year alone. There are many more stories from years past, and that families didn’t wish to share. Not to mention the loss of individuals with multiple food allergens (including milk) where the culprit remained unknown.
I believe that anyone with a food allergy or intolerance of any magnitude should be taken seriously. But please be aware that milk is a top allergen throughout the world, and it has the ability to cause severe, and even fatal, reactions.
Ways to Support the Milk Allergy Community
Every May, FARE promotes Food Allergy Awareness Week. It’s a great time to get involved in the Teal movement and to learn more. But there are also some very personal causes that have been created to support food allergy awareness.
Caroline Lorette tragically passed away at the age of 14 after having an allergic reaction to dairy. Her parents started The Sweet Caroline Foundation to promote allergy awareness and offer allergy education programming for schools and organizations. They also award a scholarship to students who develop and implement innovative ideas to bring awareness and education to students, adults and the general public.
In 2017, 3 year old Elijah-Alavi Affiq was given a grilled cheese sandwich by an adult at his New York City Pre-K school. Elijah was severely allergic to dairy, and unfortunately did not survive the incipent. His father, Thomas Silvera, co-founded the Elijah-Alavi Foundation in honor of his memory and to bring awareness to the severity of food allergies and anaphylaxis. Their mission is to provide training and education in city school and daycare centers at no cost to them. Thomas shared this video, which further explains their loss, initiative, and how you can help.
Please Share- – My Name is Thomas Silvera and I am the Co-Founder and Vice President of the Elijah-Alavi Foundation. On January 16th my son Elijah-Alavi Affiq Thomas Silvera would have been turning 5 years old today. I created this video in honor of his memory & his birthday to bring awareness to the severity of food allergies and anaphylaxis. The Elijah-Alavi Foundation and #elijahsecho is an initiative designed to raise awareness of the importance of severe food allergy/anaphylaxis, asthma w/allergies education and training. The #elijahsecho movement was born from the tragic incident that occurred in a New York City Pre-K school/Daycare center on November 3rd, 2017. The incident of which, soon after caused my son Elijah-Alavi to pass away. Despite the school having well documented all his severe food allergy and his severe allergy to dairy products, an adult employee had fed my son Elijah-Alavi a grilled cheese sandwich. Following the incident, Medical professionals worked on Elijah-Alavi as he was going into anaphylactic shock. The school had failed to report what Elijah-Alavi had been fed. Soon after, my son Elijah-Alavi passed away. The Elijah-Alavi Foundation Inc nonprofit 501 (c) (3) Was able to pass a Law called Elijah's Law #A10031 in the Senate and we’re working harder to move this bill further. we have also aided in the amendment of the NYC Department of Health Codes by providing safety with educational training provide by Code Ana and with Kaléo pharmaceutical donating 7500 Auvi-Q (epinephrine auto-injectors, USP) to all NYC regulated daycare centers to protect our young children. Let's continue to create and build awareness by putting a name and face to the importance of severe food allergy, anaphylaxis and asthma safety in the inner city schools/pre-K and daycare centers in NYC and with the hopes to continue nationally. The Elijah-Alavi Foundation Inc. is one that is very close to many of our hearts, and we are working very hard to honor Elijah's memory. With every donation given, it will go to directly to the Elijah-Alavi Foundation Inc so we can utilize our mission/initiative by providing the training and education in these New York City Schools/Daycare centers etc at no cost to them. Come and stand with my family and I. We encourage you to share Elijah-Alavi story and video by using the hashtag #elijahsecho and promote food allergy/anaphylaxis and asthma awareness and safety.You can click on the donate button below or click on the link https://www.facebook.com/beelijahsecho/#foodallergies #anaphalaxsis #NYC #daycare #PSA FoodAllergyNY AAFA's asthma & allergy friendly Certification Program NoNuts4Me Kids With Food Allergies Foundation #ElijahsEcho PTA of PS 185 The Locke School of Arts and Engineering End Allergies Together Parents of Children With Multiple Food Allergies No Nuts Moms Group Support Group and Forum- All Food Allergies Welcome MILK ALLERGY MOMMY ARMY ("MAMA") The Dad Good Morning America Food Allergy Moms of Long Island, NY Anaphylaxis Support UK Food Allergy Support – Queens NYC Milk Allergy Mommies Allergy & Asthma Awareness Initiative – AAAI Allergy & Asthma Network NAASTA 1- National African American Surgical Technologist Association Mount Sinai Jaffe Food Allergy Institute Allergy & Anaphylaxis Australia Brian Benjamin Allergy Moms Food Allergy Research & Education SnackSafely.com Ruchi Gupta Allergy Reality Red Sneakers For Oakley Fatherly TODAY Parents Parents Tia Mowry Teva Pharmaceuticals USA Teva Pharmaceutical Industries Ltd. Auvi-Q (epinephrine injection, USP) No Nuts Moms Group- All Food Allergies Welcome HuffPost ParentsTeva Pharmaceuticals USANut Allergy MumOrangecounty FoodallergyMilk Allergy MommiesFoodallergytalkLee DanielsFood Allergy Support GroupParents of Children With Multiple Food AllergiesNo Nuts Moms Group Support Group and Forum- All Food Allergies Welcome
Posted by Thomas Silvera on Sunday, January 13, 2019
Understand and Share the Message with Go Dairy Free
32 Comments
It’s amazing how misunderstood allergies are, and in particular, milk allergies. This is very insightful!
Preach, Preach, PREACH. I do not fear my son’s nut allergies, I fear his dairy the most since they are sooooo misunderstood. People cannot somehow put together that butter, cream cheese, yogurt=milk/dairy. And even then they think it’s a lactose thing. Yes, please keep spreading awareness.
Thanks Megan! I so appreciate that you are out there spreading the word, too!
Such an important post Alisa. You’re so right that a lot of people confuse lactose intolerance w a dairy allergy and it’s taken less seriously than some other allergies. Thanks for helping to spread awareness.
Thanks Jereann!
So sad to see those who lost their lives to dairy…and people just don’t get it. When we were on vacation, we stopped at a place and asked for the manager who SWORE he’d make my son’s meal himself without any contact to the allergens. When it came out, double checked with ingredients and he let us know there was no dairy, but used real butter?!!!!! WHAT?! And that’s a restaurant manager. SO scary.
That is just scary. I get the butter issue so, so much. So often in fact that when they tell me something is dairy-free, I then ask if it contains butter specifically. It’s amazing to me how such seemingly simple issues are so confusing in our society.
I am in disbelief at how people can be so confused or misinformed about food allergies, especially in the community! It is really up to us to spread awareness. Thank you for revisiting this topic. Even with the increase in awareness we need to remind people once in a while.
I think it’s hard for many to fathom unless they’ve seen it.
it IS a real thing, and the stories are heartbreaking and horrific. thank you for bringing this important subject into the conversation, again.
Thanks Kristina.
Important post and reminder. I think people assume it’s just nuts/peanuts that can be so lethal. Thanks for sharing this for better awareness.
Thanks Dreena.
This is so sad. And the sad truth is that end as a culture sneak dairy into everything! It’s very hard to avoid, even harder than gluten these days.
I once worked at a restaurant where the head chef had zero respect for allergies and me and this other girl with a milk allergy (not intolerance) couldn’t convince him to take us seriously. It was heartbreaking because he has peoples life’s in his hand and plays lip service to customers but then doesn’t think it’s real. I hope this changes and I hope we find a cure for food allergies!
I have to agree. My husband is gluten free, and almost every restaurant we go to has gluten free options clearly spelled out – but dairy-free can be a minefield sometimes! I hope that it improves, too. Thanks for stopping in 🙂
Thank you for writing this! I’ve had an extremely severe milk allergy for 27 years and it’s amazing that people just consider it lactose intolerance – including restaurants and medical professionals. I appreciate you trying to educate people on the reality of allergies 😊
That’s tough! Happy I can do some small part.
Crazy, I actually didn’t know milk allergies could be life-threatening but I knew it was a serious for sure. Thanks for the info on this…and all the important info you share!
Thanks for taking the time to read this Deryn!
Thank you for putting this article out there. You don’t know how many times I have to explain to people that my daughter is allergic to milk and eggs. People will always say “oh she’s just lactose intolerant” and I’m like no she’s highly allergic and we both carry epi pens and she wears an alert bracelet. I always say how many people with lactose intolerance carries an Epi pen and wears a bracelet and then it’s like oh I’m sorry we don’t want to keep or feed her. We must educate people about food allergies. I’m constantly doing it at my daughter’s school, work, church functions and with her friends and family.
That must be so frustrating Felicia. I’m glad that I can do my small part, but there is a long ways to go!
Thank you for writing this and raising more awareness about the seriousness of milk allergies and all allergies. My son has multiple life-threatening food allergies, including milk and this article will be helpful to share when schools and others question the severity.
I’m so happy that I can help Amy.
I suffer from lactose intolerance and I had NO IDEA milk allergies could be so severe to cause death. I’m floored and now better educated. Thank you.
Thank you for taking the time to read it Rachel 🙂
Thank you for raising awareness of the seriousness of all allergies, including milk.
For the last 21 years, we have managed milk and peanut allergies for both our daughters. Having a milk allergy is very serious, and it’s in so many food items. You are correct, milk is one of the “Top 8” allergens that account for 90% of all allergic reactions. Thank you for your website, I have used many of your recipes.
Thank you Traci, and happy that I can do my part 🙂
Please correct me if I’m wrong, but aren’t humans the only mammal that continues to drink milk after infancy/childhood? Don’t get me wrong, Ilove cheese and dairy in general, but we also nearly lost out Grandson to dairy and soy allergies, and he was being breastfed. His mother had to eliminate all dairy and soy from her diet in order for him to thrive and survive.
Hi Twila, to the best of my knowledge, that is true. I’m so glad that your grandson is okay. Thank you for sharing your story.
So sad and scary. Thank you for getting this important information out to the public!
Thanks Jenn! It amazes me daily how misunderstood milk allergies, and dairy in general, are.