I am a graduate of a Phase One FDA approved food allergy study that was conducted at Stanford University under the watchful eye of Dr. Kari Nadeau. I started the study as a 14 year- old freshman in high school who was anaphylactic to wheat, rye, barley and oats. Currently, I am a 16- year- old junior who eats a daily dose of wheat, rye, barley and oats. It’s really crazy. It was only a few years ago when I couldn’t possibly imagine a day when my Mom would ask, “What do you want for your wheat today?”
Wheat today. Wheat yesterday. Wheat tomorrow. Without really thinking about it, life goes on normally. Allergic reactions before the study, however, were a flurry of activity. In a way, it felt like slow motion: get the Benadryl and EpiPen onboard, rush to the ER, mother freaking out, father calm, face swollen beyond recognition, gasping for air, scared, red, hot, itchy mouth, throat tightening. Thankfully, since October 2012 (8 weeks into the allergy study) when my body became protected from cross-contamination, reactions became significantly less scary.
As a patient in the allergy study, there were certain rules to follow. I was instructed not to take a hot shower, exercise or exert myself two hours prior and two hours after taking my dose. This was because if I were to increase my heart rate through exercise, or get overly heated, the probability of having a reaction would increase, due to the release of histamine.
While briskly walking, maybe even a little running, back from dinner out last winter (it’s very cold here in Chicago), I became extremely red and hot about 30 minutes after my wheat dose. Redness of the skin and my body starting to heat up usually signified a mild reaction, although my mom still panicked. We called the Stanford hotline and my parents were guided through the protocol for my symptoms. I took Benadryl and Zyrtec, and then put an ice pack on my face. About 45 minutes after the mild reaction, symptoms started to decrease, and it became apparent that I was getting better.
Another day last winter, I had my dose at around 1:30pm. At 3:30pm, I started to play tennis two hours after taking my dose. After about twenty minutes, I felt myself getting hot and went to sit down. The heat that I felt was not the, “I just ran a lot and am sweating hot,” but it was the, “I am having an allergic reaction hot.”
People with food allergies know when they are not feeling well and should always speak up. NEVER FEEL EMBARRASSED. I told my coach that I wasn’t feeling well. My brother, who was playing on the court next to me, hurried over with ice bags, so that I could lower my body temperature. Again, we called the Stanford hotline and were guided through the proper response to the reaction. It was the usual post-study, relatively mild, reaction. I took Zyrtec and Benadryl, began to cool down, and went home. Although I didn’t need it, I had my EpiPen by my side, which was extremely comforting.
Thankfully, reactions post-study are few and far between. It has been explained to me that skin cells are the last cells to forget about the allergic state. Dr. Nadeau tested my blood, and it did not show any sign of reactivity — it’s only the skin. When reactions do occur they are eradicated with Zyrtec, Benadryl and cold towels. Because of this I am living proof that the future is extremely bright for people with food allergies. My family and I never imagined I would live a carefree life free from the fear of cross contamination. Being able to sit with my friends and eat a normal meal in a restaurant is really a huge bonus.
Another major benefit that stems from being involved in the study at Stanford is getting to meet so many incredible people and forging long lasting friendships with them. It’s a bonding experience when you meet another kid who is also traveling back and forth to Stanford from far away, taking daily doses, following a protocol, and wondering about the future of food allergies. When my parents first learned of the study, they were put in touch with parents whose children were further along in the process. These parents have been, and continue to be, a huge support group. Now it is our turn to pay it forward. Whenever we are presented with an opportunity, we are happy to speak to, or guide other families. Because of the groundbreaking, life changing, innovative and incredible work that Dr. Kari Nadeau and her team are doing at Stanford, and now in select other sites across the country, people with food allergies can look forward to full lives without fear of the simple things.
Do you cross-examine each chef every time you walk into a restaurant? Do you watch the chefs in the kitchen prepare your meal to make sure that they use new tongs? Do you wipe down the airplane seat, tray, and seat belt, making sure there are no life- threatening crumbs left behind? Are you fearful of shopping carts, airplanes, and movie theatres?
A few years ago, I would have said yes. Today, my answer is a firm NO.
Matthew Friend is a high school senior from Chicago. He has written extensively about his experience as a teen with food allergies and as an oral immunotherapy clinical trial graduate in Huffington Post and Stanford School of Medicine's SCOPE blog. He is also the guest editor of the Center's Fall 2015 Teen eNews edition.