Adults with Food Allergies Part 2: “You Have to Relearn How to do Everything Around Food”

This is Part 2 of a two part series on adults with food allergies.

Food allergies among adults is an emerging issue. At one time, it was thought that it was rare for food allergies to develop in adulthood. However, recent research shows that potentially as many as 10.8% of adults has a food allergy. To understand this issue better, Sherry Coleman Collins (SCC), registered dietitian nutritionist, interviewed two adults with food allergies. Kortney Kwong Hing (KKH) has multiple food allergies, including to peanut, sesame and sunflower seeds – some of which developed as a young child and more that were diagnosed in adulthood. She lives in Berlin, Germany now and is Canadian by birth. She authors the popular blog Linda Menighan (LH) has a daughter with food allergies and is also an adult with multiple food allergies, including walnuts and seafood, diagnosed in her 40’s. She lives in Berin, NJ and is a Food Allergy and Anaphylaxis Connection Team (FAACT) advocate.

SCC: What’s the difference between being an adult with a food allergy and having food allergies as a child?

KKH: The biggest difference is a mourning period that happens because you understand that something has been taken away and your life is going to change. For instance, my father is Chinese and all of the sudden going to a Chinese restaurant was really hard. I had to learn to make some favorite dishes differently or couldn’t eat them anymore. I don’t know what it was like to ever eat peanuts. A lot of adults recently diagnosed have to relearn how to do everything around food – how to feel normal in a group of people. When you’re an adult you process this all yourself. As a child you have your support of your parents, but adults don’t have that. Mom did so much but worked hard to make it “not a big deal” so that I wasn’t different [from my peers].

LM: Being diagnosed with food allergies as an adult rather than a child is different because I used to eat the foods I am now allergic to. I loved eating shellfish and my mother’s walnut cookies were my favorite. I know what I’m missing by not being able to eat those foods any longer.

SCC: What are some of the hard things about having a food allergy?

KKH: The unpredictability of food allergy reactions is the scariest part. At 19, I had anaphylaxis to sesame. Every reaction can be different, so I can’t just assume itching or hives won’t lead to something more and it can happen so fast.

When people find out I have food allergies, they are a little shocked because I’m not a child. Adults with food allergies sometimes hide it, because they’re worried about what others will say; I’ve felt like people treat me differently because [they think] it’s a childhood disease. Adults don’t want to be an inconvenience. Many [adults with food allergies] feel isolated.

LM: The hardest part of having food allergies is not being able to reach the world with a message to educate everyone about living with food allergies and that a simple change can allow inclusion rather than exclusion. With education comes awareness, with awareness comes advocacy and with advocacy comes empowerment.

SCC: Many people claim to have allergies, but they really don’t – sometimes they have an aversion (like my husband to onions!) or sometimes they have other reactions that look like allergies but aren’t (like in lactose intolerance). How does this misperception impact those with true food allergies?

LM: Those that say they have a food allergy and truly do not have an allergy are doing a disservice to those of us who really do have life-threatening food allergies.  We are not trying to be picky with the food we order.  We need to ensure that that chef takes our food allergies seriously because if we eat certain foods, it could be life-threatening to us.

SCC: What would you recommend to an adult with food allergies about eating out?

KKH: When you go out for dinner at a restaurant [be prepared]. I have a chef card that I give to the waiter. I ask them to please take it to chef, but if they have a problem then there’s no need for them to cook for me. I don’t want them to say, “I’ll try.” I don’t want to take any chances. This opens a lot of conversations with waiters. They understand my severity. But when they take all of the precautions and see someone eating off another’s plate, they may not take allergy seriously. I have been asked “is it a real food allergy or intolerance”? That behavior can downplay the severity of allergy.

SCC: What would you say to an adult who thinks they may have a food allergy regarding diagnosis and management?

KKH: Having food allergies means you have to do things differently and it can be overwhelming. Don’t ignore the emotional side of that. Doctors will give you all of the information for practical management, but they don’t necessarily address the emotional side. Emotional support isn’t part of the diagnostic process. Part of management IS about learning to manage the emotional part. Find another person in the food allergy community who can help validate and support you, because they can understand in a way that someone without food allergies can’t.

Food is something you can both enjoy and fear at the same time – pleasure and anxiety. This is where the isolation comes from. It can be easy to read labels, but not always easy to talk about living with food allergies. Connections with others really help normalize my allergies. To know that you’re not alone is really important. And – carry your epi!

LM: If an adult thinks they may have a food allergy, I would absolutely tell them to see a board-certified allergist to get a proper diagnosis. An accurate diagnosis is important because the allergist will explain how to live a life with food allergies and provide a person with a prescription for epinephrine.

Being diagnosed with food allergies as an adult is not the end of the world; you simply have to make different choices or substitute out ingredients in a recipe. You learn to become empowered to be your best advocate when it comes to eating. Also, always have safe snacks available when there is a circumstance when you need something, and the options are not safe. Always carry your epinephrine with you!

To learn more about the recent research on food allergies in adults, read Part 1 of this two part series.