What were you doing before TIP to stay safe?
Avoidance. When I was younger, I just had a peanut allergy but around 17-18 I started having big, unexplained reactions that sent me to the hospital. I had to use my epi like 9 times and I was at the point where I was recognizing the firefighters because I was going to the hospital so much. It turns out that I was developing new allergies. I had no idea what they were but it got to the point where I was so scared of eating anything that I was desperate for any kind of help.
How were you feeling before joining TIP? What was your state of mind?
I was scared. I have a history of continuing to develop new allergies since I was 12 and I didn’t know if or when it was going to stop. Only 4 of my allergies show up on a normal Kaiser test (peanut, hazel, pecan, and walnut) but I knew that wasn’t right because I’d reacted to other tree nuts before. It felt like I was having constant reactions and nobody could help me. I wanted to try TIP because I didn’t want to keep living like this.
How did you find out about TIP?
I have a food allergy Instagram account and I kept seeing other accounts posting the dosing gummies. I learned they were a part of TIP and started talking to an adult who was enrolled. She said the program was really helping her. I asked her a ton of questions and she convinced me to sign up for the waitlist.
What was your biggest concern or reservation about starting the program?
I was a little worried it was too good to be true because they’re basically promising you the world. It’s everything you’ve ever dreamed of as someone with allergies.
How did you navigate it?
The outcome of being able to freely eat my allergens was in the back of my mind but I knew that it wasn’t going to be all rainbows and sunshine all the time. My mom and her sister have both done allergy shots for their severe environmental allergies and that helped me see treatment isn’t always fun and you might even have to deal with some scarier moments. I went into TIP prepared for that. Talking to other people online helped, too. There are a lot of Instagram accounts where people document their experience but talking to older patients like myself was what helped the most. After I got accepted to the program and did the testing, I got the results from my blood test and it showed everything I was worried I was allergic to. No other test had shown all of my allergies and all of the things I was worried I was allergic to. Seeing that was super validating.
What was the deciding factor for you to join TIP?
I knew there were treatment options that got people to the point of being able to handle cross contamination or accidental exposure but what set TIP apart and made me want to join was that outcome of full food freedom, which is the dream for every kid with food allergies growing up.
Did you know anyone in the program or connect with anyone before starting?
Yes! I talked to people online and one of them was another adult in program with a similar story of developing new allergies. It was really helpful to talk to her because she knew the struggle of suddenly not being able to eat things and the fear that comes with that.
How have you kept yourself motivated in the program?
I went in with a mindset of “This might not be easy all the time but it will be worth it.” I stay motivated by thinking about what’s on the other side of this experience for me.
What would you tell someone considering TIP?
Personally, I think TIP is amazing and I recommend it. I think it’s important that people look at the time commitment and make sure it’s something they can do. I also think it’s important to be mentally prepared for it. I feel really safe in the program and I think everybody should but I also think it’s unrealistic to believe you won’t experience discomfort or feel drained sometimes, although I know my experiences might be different because I’m a more extreme case. For parents, if a child is experiencing a lot of anxiety I think it’s worth seeing if they can go to therapy while doing the program. I started seeing a therapist at the beginning of my time in the program and it’s helped.
What’s been your favorite moment in the program?
Brazil nut was the first nut that I got to eat freely and even though I’m not the biggest fan of it, it was a big moment for me. I remember sitting at my table eating maintenance and thinking “Holy cow, I’m eating a brazil nut. This is crazy.” I have a lot of those moments when I’m doing maintenance for my other allergens, too.
How has TIP changed your life?
Going into TIP, I was having a lot of reactions. Now I’m on SLIT and allergy medication that’s been adjusted for me. I wake up and I’m not constantly itchy. My skin used to constantly feel like it was on fire but now I only get eczema in the colder months. I’m so much more comfortable and so much less worried. I used to be scared to be alone because I was always itchy and afraid that the itchiness was going to turn into anaphylaxis. Now I know I’m going to be fine. I enjoy life more and there’s this sense of hope for me. One day I’m going to be able to go to a fancy restaurant with my boyfriend and we’ll be able to eat whatever we want. It’s exciting to think about the things I’ll be able to try. It’s opened up a whole new world for me.
You can find Jess on the Spokin app @nutfreejessica, on Instagram @nutfreementality, and on her blog Nut Free Mentality, where she writes about her experience with food allergies and her time in treatment at the Food Allergy Institute.
