Lilly’s Story

Shining a Light on Sesame Allergy

Lilly is grateful for the protection and freedom she gained from treatment for her sesame children’s allergy. She hopes to reach a new level of awareness of sesame allergies and her own story. Shared here by her mother, it will make life safer for many others. Fifteen years ago, I sat my 17-month-old in her high chair and offered her one of my favourite foods for the first time before a children’s allergy test. She dug into the hummus enthusiastically for about five minutes until I realised with dread that she had hives covering her face and neck. For months, we knew that Lilly was prone to allergy issues. She already had difficulty with dairy. She had small, mysterious hives when she nibbled on her first bagel.

First contact

It wasn’t until that moment that we suspected a sesame allergy to the hummus — made heavily with tahini, which is ground sesame paste —. In those first weeks of confusion and fear after her reaction, our paediatrician threw her arms up and “said, “I guess you can be allergic to anything, can’t test for sesame Children’s allergy test. You can take her to a Children’s allergy test.” Thankfully, an allergist quickly refuted”that “advice” and promptly did blood and children’s allergy tests confirming not just a sesame allergy but dairy, oat, almond, and soy.

Over the years, Lilly’s Allergies have changed in so many unexpected ways. Thankfully, so has the awareness of sesame as a major allergen. These past few weeks, with big changes to labelling laws and the surprising news that popular restaurants like WendWendy’sick-fil-A and Olive Garden are adding sesame to products previously considered safe, sesame is finally making headlines. This feels acute and scary for many families as safe foods and restaurants are now crossed off the list. But this level of awareness of sesame allergies is a huge leap. And there is hope. Lilly’s story is an excellent example of that. 

Hope for Our Family

For many years, anxiously managing Lilly’s allergy with strict avoidance, we lived in an isolated silo. My extended family didn’t understand why Lilly’s had to be homemade or why I distrusted ingredients that vaguely said “spices and natural flavours”. My husband and I ate most takeout food as if it was illicit –  always after she was safely tucked into bed and never saved those leftovers in the fridge. Because there was no educational material in the U.S. on where sesame might be hidden, each year, I dug through literature from Canada to recreate my information sheet to educate teachers and other parents. Those were tough, exhausting years keeping Lilly safe.

Hope arrives?

Hope arrived when Lilly was 8 — ironically after a failed in-office food challenge (a Children’s allergy test). Our allergist started offering oral immunotherapy (OIT) to select patients, and he thought she would be a good candidate. After she reacted to a small amount of tahini at her food challenge, we realised that strict avoidance would continue to take a toll on our whole family’s well-being. Desensitisation with OIT offered us an “insurance policy,” the idea that if Lilly unknowingly ate a small amount of sesame, she wouldn’t do it.

For years, Lilly dosed religiously, mostly preferring tahini with equal parts sugar in a spoon. We occasionally mixed it up with tahini cookies for dosing at sleepaway camp. But she had her system and stuck with it. The Children’s allergy test was a leap of faith for all of us, but especially for a child who has been told her whole life that food that others enjoy could poison her.

Light at the end of the tunnel

We had a mantra e had a mantra when she was very little: “Yes, “Sesame Street. No to sesame foods.” Les” than a year into treatment, life had opened up. Lilly’s favourite takeout meals were sushi and bagels. At 13 years old, with five years of OIT solidly behind her, we grew more relaxed about her maintenance doses. But the real test of her treatment came later that year.

At a party, Lilly told me she enjoyed a big chunk of “delicious peanut butter fudge.” She”had eaten a large portion of sesame halves. Without a mild reaction, she could take four times the amount of sesame protein in an OIT dose. With the long-term maintenance of OIT, it’s important to have checkpoints for testing. To understand better how the allergy may have changed. That accidental halve ingestion was the impetus for us to do updated testing. Her blood IgE had dropped significantly, and her skin test was negative. Ultimately, an in-office food challenge at Latitude would clarify what she was safe to eat.

Challenges ahead

She passed that challenge, giving her the confidence to eat sesame products and ingredients freely. I am comforted that my daughter. Nearly 17 years old and planning for college. It is safer globally thanks to OIT and Children’s allergy tests. But families like mine who commit to long-term treatment never forget the “why” Why did we start OIT in the first place?? Because of that, as sesame is in the headlines, I encourage all food allergy families to be familiar with the symptoms of a sesame allergy, the ways sesame can be listed as an ingredient, and, most importantly, consider updated testing and proactive.