This guest post will take you through the experience of a brand new treatment for food allergies, the Tolerance Induction Program. This personalised program is tailored to an individual's needs and promises freedom from fear of a reaction.
I'm not the spontaneous type, so signing up for the Tolerance Induction Program (TIP™) at the nonprofit Southern California Food Allergy Institute (SCFAI) after hearing about it from other allergy bloggers was a surprise to me. Desperate for any relief from my food allergies and the anxiety they caused, I took a chance and have never looked back. The life-changing moments that followed that acceptance email telling me I was off the waitlist has given me a new future.
I signed up to be on the waiting list for SCFAI back in February 2019, shortly before I turned 21. The program requires patients to be no older than 21 by the time they start the program, and I had heard the waiting list could take years. So I figured there would only be a slim chance I’d get in on time. But when I got the email and realized I could start in time, I knew it was a sign from the universe that this was my time to find food freedom.
My Life With Allergies
I have lived with food allergies for 23 years now. Over the years, starting at age 12, I have continued to develop more food allergies.
I was diagnosed with a peanut allergy at age two, though my mother suspected it before I was officially diagnosed. Then at 12 years old, I had my first experience with anaphylaxis after stuffing my face with walnuts at a Christmas tree farm. Up until that point, I had no idea you could develop new food allergies, so it was quite a traumatic surprise. As it turned out, further testing found that I had become allergic to all tree nuts, coconut, and mustard.
It was a scary way to find out. I ended up needing therapy for my anxiety just to feel safe enough to eat without having a reaction again. And unfortunately, I did. About two years ago I started to develop additional allergies to wheat, soy, more seeds, lentils, and chickpeas.
Signing Up For The Tolerance Induction Program
At the time of signing up for the SCFAI I didn’t know yet about all my newest allergies. But I constantly felt itchy, and I knew something new was happening. I was desperate for a change and was honestly terrified that my body would just never stop developing allergies. I woke up each day wondering if at some point the constant itching would randomly turn to full blown anaphylaxis and I was so scared. It felt like I was in survival mode just trying to deal with the anxiety and itching all day. I felt trapped in my own body. It felt like a child that needed to be constantly watched and I was tired of it.
So, I signed up to be on the waiting list for SCFAI after coming across it online and talking to a few other people involved in it on Instagram. At the time, I was just starting to get involved with my Instagram and blog “Nut Free Mentality.” I talked to one young adult like me and she had me convinced that I should sign up. So, I did, not allowing myself to think about it much.
Waiting and Hoping
As the months later passed, I sometimes wondered about the program but dared not get my hopes up. I thought about the magazine articles my mom showed me about OIT when I was younger. Back then, I had been adamant that I would not do it. At the time, I was just a young girl with a peanut allergy. The thought of even being in the same room as a peanut was enough to send me hyperventilating.
Finding out I was accepted in December 2019 was a surprise to not only me, but my entire family as I had not told a soul about the program or that I had put myself on the waiting list. We talked about it and looked into it for a day. Ultimately, we all felt that TIP was something that had the potential to improve my life quality dramatically.
It felt too good to be true at the time, but I was desperate. I believed that anything they could do to help me would be worth it. And thank goodness we did this, because I can tell you, this program has changed my life for the better in so many ways.
What is the Tolerance Induction Program?
When people think about food allergy treatment programs, they often think of OIT, but TIP™ is a program exclusively done at the Southern California Food Allergy Institute. While OIT and TIP™ are both immunotherapy programs that help gain some sort of tolerance for food allergy sufferers, TIP™ is far more individualized and actually promises food freedom – the ability to eat whatever you want, whenever you want.
Each patient at SCFAI is tested in three ways: skin prick testing, blood testing, and a 24-hour patch test. The first two tests are done on the first appointment. Then, the patch test is done on the second appointment (which is actually two appointments). Each test helps generate a very in-depth unique allergy profile that shows the level of each allergy and how they are all related to one another.
Starting the Program
We begin the program by working on our least severe allergies. At the same time, we also dose in a very specific way that means that our worst allergies will be less once we get to them. Based on our testing results, we take very small amounts of our allergens (so small that they are put into gummy bears). We introduce them in the clinic before continuing to dose at home for several weeks. After that particular dosing cycle, we go in and challenge the food at a higher amount before moving onto the next allergen.
As we treat our food allergies, some patients do Sublingual Immunotherapy (SLIT), which helps treat environmental allergies. Often times our food allergies are linked to our environmental allergies. So SCFAI looks to treat the entire allergic system rather than one or two particular food allergies like OIT. Patients in the past have gone from having really intense food allergies to eating anything they want. My hope is that I too will be that success story one day.
Going Through The TIP Protocol
I have been doing TIP™ for a little over a year now. My appointments are in the Long Beach clinic roughly every seven weeks. I have 21 foods to work through and so far, I have made it through six. It’s a lot to keep up, but totally worth it for me.
It wasn’t easy on my body at first. My plan had to be adjusted a bit in the beginning as I struggled to dose with coconut. Occasionally I wake up with stomach aches the morning after an updose. I also find some doses make me more tired than others. But the thing about this program is I have never had any major reactions despite having had bad reactions in the past to some of the foods I am now eating.
My Tolerance Induction Program Results
Before doing TIP™ I was constantly itchy, but now I feel so much better than I did before. I actually have days where I am completely itch free. This seems so strange considering I am currently eating my allergens in small (doctor approved) amounts each day. SLIT has improved my environmental allergies substantially and I am no longer having to take Benadryl daily.
I feel a sense of peace more than I ever have had with my food allergies. I have to say that I do get nervous when I start dosing for a new food. The food challenges and introductions done in the clinic can be a bit nerve racking, but I trust the program to keep me safe.
Through TIP™, I also learned I had vocal chord dysfunction and was able to get vocal cord speech therapy to treat that. I’ve currently been dealing with issues with GERD too. The clinic team has been really supportive and flexible as I do various tests and procedures outside of the program to figure out what could be going on (it’s not EOE).
Finding Food Freedom!
I have found that I am no longer looking at foods on Instagram, Pinterest, and TV wistfully. In the past, I used to look at “pretty” food and wish that I could try it. I used to be jealous when I heard people talk about going on dates at fancy restaurants and other countries. But now, while I am still not at that point, I have found that TIP™ works and I too, can travel the world and eat “pretty” food. I am eating coconut, sunflower, pumpkin, soy, pine nut, and brazil nut – all things that I was allergic to just over a year ago. So now, I think, “one day I will eat that.” There is this new hope that comes with treatment.
I have lived 23 years of a food allergy life, but it may not be a life sentence anymore. I still am someone with food allergies, and I will continue to be for a while. But I am slowly pushing on in hopes that the time, effort, and money will bring me full food freedom. I really think it will. The mental block of eating things that you used to be allergic to is hard to get past, but one day I think that will be easier too.
My Dreams for the Future
Because of TIP™, I know that so many things that I could only dream of may come true. I know that one day I may be able to go to Europe and eat whatever I want. Soon, I might be able to just walk into a restaurant and eat without thinking too much about it. I can have a big, glorious wedding cake made from wherever I want. And I won’t have to avoid kissing my boyfriend if he ate nuts one day and we can go on a proper date to a classy restaurant.
I never thought I would be the gal who could face her allergens head on like this, because the truth is it is scary, but I am so thankful I have become her. TIP™ is not for everyone; it has its moments of being very draining as it really is about retraining your body to accept things it REALLY doesn’t like. For me personally though, it was the right choice to make and I am so looking forward to the future.
Jess Carrillo is a food allergy advocate and TIP™ patient at the Southern California Food Allergy Institute. She is a college student currently majoring in communications and minoring in studio art. She likes to focus on mental health and the toll that food allergies can have on one’s mental health. The goal of her advocacy is to help other young kids and adults with food allergies know that they aren’t alone in their food allergy anxiety. You can find her advocacy on Instagram @nutfreementality or www.nutfreementality.com.