My OIT Journey
In August 2017, I walked in for the first appointment of an experience that would lead to some positive changes in my life. The start of a journey that has continued to this day.
Growing up in Silicon Valley, near Stanford and other research leading organizations, I have been very lucky with all of the support, help, and opportunities that surround me. I have had food allergies to eggs, dairy, and all nuts my entire life. Before 2017, with the help of friends in the food allergy study field, I had the chance to participate in two OIT trials. However, I had backed out of both. Based on past allergic reactions, my fear of food challenges and the idea of ingesting my allergens was too scary and this fear just took over. It didn’t help that during one of the screenings for a possible OIT study enrollment, we were waiting for a long time to see the doctor because one of the patients on the floor had gone into anaphylactic shock during a food challenge. Despite having parents in the medical field and knowing some friends with allergies who had gone through studies with positive results, I didn’t feel safe even in a controlled medical environment. This fear caused me to be afraid of trying any new foods and it stopped me from enjoying parts of my life. It even kept me from an opportunity that could open up my world and increase my allergy safety.
Early in 2017, we got word of a new food trial from a family friend who was working as the patient care coordinator at the Sean N. Parker Center for Allergy and Asthma. The food study was called MIMIX, a multi-OIT (oral immunotherapy) trial using Xolair. It was another study under the direction of Dr. Kari Nadeau. Xolair is a drug that was already approved to treat asthma, and they wanted to see its effects on food allergies. When I heard of this, I had initially said no, no way. I did not want to put my life in jeopardy. However, after being convinced by my family and thinking about the millions of people who could benefit from the opportunity I was being given, I said yes. What was special or different about this food study for me (also the most convincing point) was that there were no food challenges involved. It, instead, would build my tolerance over time with no fast building food challenges. I also wasn’t going to do it alone, this study allowed siblings to participate together, so my older brother did it with me. (He is allergic to wheat, soy, dairy, eggs, nuts, legumes, and shellfish. Much more than me!)
My first appointment was a screening in August of 2017. There we did skin prick tests, showed blood work, provided past experiences and the history of our allergies and reactions, and discussed what the desensitization entailed. The study involved OIT for up to five allergens, tested Xolair, and it was a double-blind study. There were two lanes, a lane with a higher dosage of allergens (1600 mg-split among qualifying allergen(s)) and one with a lower dosage (1200 mg-split among qualifying allergen(s)). Double-blind, in my situation, is where the patient and the doctor/nurse do not know the amount (higher or lower lane) of the allergen(s) the patient is consuming. My allergens that qualified (high enough IgE’s) to be treated were for eggs, milk, cashews, and walnuts. (My brother qualified for wheat, soy, dairy, eggs, and peanuts.)
The appointments early on were only to administer Xolair, in the form of a shot. I received a couple of shots of Xolair over the course of two months. A small, fun detail I remember was when I received the shots, they used a buzzy bee. It was a vibrating ice pack (in the shape of a bee) that would distract the nerves in the immediate area, so the shot would hurt less. My body accepted the shots well, and they prepared me for what was to come.
Beginning around November 2017, I started on the allergen consuming part of the trial. Although we didn’t know it at the time, I had been put in the high dosage lane (1600 mg by the end of the study), while my brother had been put in the lower dosage lane (1200 mg by the end of the study). We both began on 5mg of the protein (in the form of a powder) of our qualifying allergens. We would consume it mixed in applesauce. Pudding was another option to mix the dose in, but neither of us could have dairy. This was the first time I had purposely consumed my allergens, and I was terrified. I remember no one, not even my mom, made a big deal out of eating that very first allergen-mixed-applesauce. When they told us to go and eat it, my brother fearlessly dug in. I, on the other hand, was shaking as I raised the spoon to my lips. I knew I had to stay strong and just do it, but all of the fear over the years was holding me back. I eventually forced myself to go for it. I ended up being completely fine, and I was very relieved. This moment gave me a sense of newfound pride and confidence. Under the care of all of the doctors and nurses, I was in good hands.
I was then given several little containers filled with my very own allergen dose, enough to last me until my next appointment. I had to take it, mixed in with something more appetizing, every night. I was required not to do heavy activity two hours or less before and after taking the dose. This was tough because I had a very busy schedule, so I would often take it late at night. However, taking it late at night required me to stay up even longer and monitor how I felt. I was also required to record how I was feeling onto a data form they gave us. I would log reactions like itchy skin, itchy mouth/lips, hives, stomach pain, breathing problems, etc. An itchy mouth and stomach pain were some of the uncomfortable reactions. I treated the itchy mouth with ice, and the stomach pain, mild chest pain, and other mild reactions by pre-medicating with Zyrtec (an anti-histamine).
Following that life-changing appointment, I continued to go in every couple of weeks to increase my dosage of allergen protein powder. Increasing slowly from 5mg to 10mg to 50 mg to 100 mg and so on. I spent countless hours at the hospital, just waiting, so my vitals and any possible reactions could be tracked. Those hours were filled with watching movies, doing homework, reading, and playing games. For every increase in dosage, I continued taking it every night and logging my results. The only time I would not take it was when I had a cold/flu or not well in any way because having a compromised immune system can increase an allergic reaction. A difficult part of the study for me was getting past the taste of the OIT dose. As my doses were amped up, the concentration of allergens in my applesauce increased. The unappealing flavor became more potent than ever, and it was challenging to take each night. We tried to mix it with more flavorful liquids like smoothies, but the disgusting taste (especially of the dry clumps) never went away. My brother seemed to have no problem with the taste. In retrospect, it was because he was on a lower dose of OIT. To this day, I don’t really like smoothies anymore because they remind me of the terrible tasting powder.
In March 2018, I officially completed the study. After reaching the maximum dosage offered in the food study, we were given real food conversions. I ended up being able to eat one cashew=~400mg, one walnut=~400mg, three milliliters of egg whites=~400mg, and nine milliliters of milk=~400mg. Although the amount seemed minuscule, it was a great feat. I had to continue eating this amount every night as my maintenance dose. I was told, after a couple of solid months, I would be able to increase that daily amount.
I was at home when I ate the pure food versions of my allergens, purposely, for the first time (along with my brother). It was very memorable. My mom was drawn to tears when she watched us consume our allergens in real food form for the first time ever. I had never tasted anything like it before (especially the nuts). I love the cashews and the lightly fried egg whites. It tasted similar to chicken (in my opinion). The milk was okay, but I now prefer (Nesquik) chocolate milk. I dislike the candied walnuts the most. Fresh walnuts are okay, but when a bag of walnuts starts to go stale after a couple of weeks, it is not good. (I only eat one a day and no one else in my family eats walnuts regularly.) I still eat this amount every night because my allergist wanted to do food challenges on other allergens first, before increasing the established dose from the food study.
OIT has opened up opportunities in my life. Although I haven’t gotten to the point where I can eat anything and everything, it has opened up my world. Most notably, my level of comfort and trust at restaurants, school, parties, etc. has increased massively. I feel safe eating foods that “may contain traces...” and those that are “made in a facility…”. It has provided a little bit of cushion or protection when it comes to trying new things, however, I always check thoroughly no matter what. Although it seems like a very minuscule difference, it has been life-changing. Most importantly, my allergy based fear is slowly diminishing as I learn to take control and handle my allergy situations. In hindsight, starting with a food challenge would have produced greater results but because of the depth of my fear and anxiety around-consuming my allergens, participating in this OIT study allowed me the chance to get used to the idea slowly, and the exposure to my allergens was gradual. I feel this OIT program was a gentle approach that has helped me tremendously.
My journey didn’t stop there. In January 2020, long after I finished the OIT program, I did my first food challenge ever, a very brave step for me. I started at a new clinic called Latitude Food Allergy Care, a UCSF affiliated clinic. After the usual screening of skin prick tests, blood work, and allergy history, I learned that my food allergies had decreased significantly. My cashew and walnut numbers had decreased heavily, and my egg allergy was on its way towards disappearing. My milk allergy, generally a tougher one to get rid of, still needs some work, but I will get there eventually. We created a list of future food challenges starting with baked egg and baked milk (in the form of muffins). (Baked allergens are easier to handle than raw allergens due to changes in the protein structure.) A food challenge is where you ingest your allergen in growing amounts separated by certain time increments while being monitored for a reaction. You continue to eat until you have a serious reaction or until you reach the maximum amount being given. Between January and February, I successfully passed both of those challenges, as expected. I am now able to eat baked goods with egg and milk being listed as the third ingredient or below, or eating homemade baked goods with amounts around two eggs and one cup of milk per dozen. An exciting moment was getting to crack an egg for the first time when I made my allergen muffins. I can eat those baked goods anytime, but they recommended I eat it twice a week to maintain my tolerance. My food challenges became halted by the pandemic, however, I still have many food challenges (that don’t include the foods I was desensitized to during the MIMIX study) still planned. Those include baked cheese, hazelnuts, peanuts, uncooked milk, scrambled eggs, and several more challenges. I am excited to continue building on my tolerance, leading to a less constricted life. I will probably remain on this OIT journey for the rest of my life, but I feel safer now and it has opened my world to new foods.