My Treatment Journey: 2018
With 100+ IgE mediated food allergies that all developed in my young adult life, you could say my life turned upside down and I became desperate for help. Many of my food allergies (possibly even all?) started out as oral allergy syndrome due to my severe environmental allergies that I have had since I was a child.
At the start of my journey at the Tolerance Induction Program, it was confirmed after extensive testing that I was anaphylactic to 6 foods: peanuts, almonds, hazelnuts, soy, carrots and peaches. It was also confirmed that I was allergic to almost everything else to varying degrees. Most foods were borderline between causing oral allergy symptoms and anaphylaxis. If I were to continue eating those foods, they would most likely all eventually result in full blown anaphylactic reaction as the other 6 foods have.
After many months of being on SLIT (sublingual immunotherapy) which is similar to allergy shots but done daily at home as a spray under the tongue, I was ready to start tackling actual foods at the very beginning of 2018. After living on pasta with cheese for the past 2 years, you could say I was overcome with excitement.
Read the titles for a summary, read the paragraphs for the details!
First step: challenging foods after being on SLIT for a few months!
Before beginning to dose for foods, I first challenged various foods at the clinic. These foods (in no particular order) included: apple sauce, lentils, chickpeas, an orange, melon, tahini, coffee, chocolate, vanilla and brazil nuts. Food challenges consist of eating a specific amount of the food and then running for 5 minutes to bring up my heart rate and body temperature in order to try to induce anaphylaxis. When no symptoms present after running, the challenge is said to be successful and they were then added as daily maintenance foods. I spent the end of 2017 and beginning of 2018 challenging these foods in the office.
My first treatment food: ALMONDS!
At the end of January, I was ready to begin dosing for my first treatment food, almonds. I was terrified at the initial challenge in the office, but I got through it without any issues! I then dosed for almonds at home for 6 weeks, with an updose once a week. I was extremely anxious during my dose every night, and I always had EpiPens, Benadryl, prednisone, and a pulse oximeter in front of me. Luckily, I never had to use any of them. After 6 successful weeks of dosing, I challenged 22 almonds in the clinic and was cleared to eat as many almonds as I want (or don't want) as long as I kept up my daily maintenance of eating 8 almonds a day.
Next up: SOY
Soy was the one food I was the most afraid to dose for because my worst allergic reactions have been to soy. When I had my initial challenge at the clinic, I was terrified, I almost started crying. All of the nurses got so scared only because I was so convinced that I would have a reaction. When I took the tiny initial dose, I had 5 nurses standing in the room, ready with EpiPens and Benadryl in hand to treat me. But nothing happened, and I went on to dose with soy milk for the next 5 weeks at home, again with everything at the ready next to me (EpiPens, Benadryl, etc.) After 5 successful weeks of dosing, I challenged 8oz of soy milk in the clinic and was cleared to eat/drink as much soy as I wanted (or didn't want to) as long as I drank 6oz of soy milk daily.
Next up: HAZELNUTS!
I was so excited that it was time to dose for hazelnuts because that meant that in 6 weeks, I would be able to eat Nutella again, one of my favorite past times. I had my initial challenge in the office as usual, and after 6 successful weeks of dosing, I challenged hazelnuts at the clinic and was cleared to eat as many hazelnuts as I want (or don't want) as long as I kept up my daily maintenance of eating 6 hazelnuts a day. Unfortunately, Nutella was not as tasty as I remember it being and I am not a fan anymore, which is so strange because I used to eat it by the spoonful.
ROADBLOCK: Problems with soy milk.
Drinking the 6oz of soy milk resulted in severe stomach pain most days, and I wasn't able to figure out if certain things helped or not. My soy milk maintenance dose was reduced from 6oz, to 4oz, to 3oz, and although at 3oz I wasn't getting stomach pain, it was making me bloated. I was then switched to one teaspoon of soy butter daily which hasn't caused me any issues! I am not sure when I will be able to switch back to soy milk, but I do know that I am still safe from cross contamination to soy milk (which is important for drinking coffee out!) I also eat soy sauce, soybean oil and soy lecithin with no issues.
Challenging two more foods: avocado and tomatoes!
After hazelnut, I had all my testing redone again, and I was able to challenge both avocado and tomatoes which I was so excited for! Avocado was added to my maintenance foods to be eaten 3 times a week minimum (but more if I want), and tomatoes was not added to my maintenance foods, but rather in a category that allows me to choose if I want to eat it or not, with moderation though because I could only handle a certain amount of tomato skin before starting to feel itchy. I'm still kind of anxious to eat tomatoes so I haven't been eating them, but I do eat avocado often now!
SIDE NOTE: Why are some foods required and others are not?
The Tolerance Induction Program works on a network on how the proteins of each foods cross-react with each other. The reason for the initial challenges before I started dosing for foods was because those specific proteins will help prep my body and immune system to be able to handle the next foods I dose for. The order of dosing for foods is very specific, and is not chosen by the patients. Each food helps prep the body for the next food due to how the proteins cross-react with each other.
Next up: PINE NUTS!
At this point, I was not anxious anymore to start new foods. Especially since I feel like I got through some of my hardest foods already. Pine nuts was a breeze - no more dosing with EpiPens and Benadryl in front of me, no more having panic attacks every time I had to dose. After successfully dosing for pine nuts for 6 weeks, I challenged around 70 pine nuts at the clinic and was then cleared to eat as many pine nuts as I want (or don't want) as long as I eat 30 pine nuts daily for maintenance.
ROADBLOCK: Reactions to potatoes, and slow immune system.
Potatoes were a food that was put on my safe list months ago, without an obligation to need to eat them. I suddenly started reacting though, not life-threatening reactions but just getting some small bumps in my mouth after eating them which would go away a couple of hours later by themselves. I was told that it was most likely from the skin of potatoes, but I am too scared to keep eating them so I have cut them out for now. Testing also showed that my immune system is not making progress as fast as the average patient. Obviously, it was making progress since I could now eat all these new foods, but the progress wasn't fast enough for me to be able to safely dose for certain foods. In order to give my immune system a little bit of time to catch up, almonds, hazelnuts and soy butter were moved to once a week instead of daily.
Next up: EGG YOLK!
I was so excited to begin eggs. I love to eat cookies and brownies and cakes. These baked goods are also great for mixing in maintenance foods. Replacing eggs with apple sauce though did not work for most recipes, only for brownies. I could not make cookies. After successfully dosing egg yolk daily for 5 weeks, I challenged 30mL of egg yolk at the clinic and was free to eat as much egg yolk I want (or don't want), as long as I ate one egg yolk daily!
ROADBLOCK: I started falling behind on maintenance foods.
For purely mental reasons due to anxiety, I wasn't able to keep up with my maintenance foods. For some reason, I am still anxious about almonds, hazelnuts and soy butter. The fact that it was moved to once a week from daily made it harder for me. Eating it daily lowered my anxiety because I was exposed to it so often, but now that it's once a week, it's like I'm anxious all over again every week when I need to eat it and I keep saying I'll eat it tomorrow and next thing I know, 3 weeks have passed. It sounds like a long time, but it doesn't feel like a long time because I have more than 10 other foods I eat for maintenance plus the food I am updosing for, so I still feel like I am doing so much. Then I finally choose a day and say "this is the day I am going to eat the 3 foods!" but then it's like a catch-22 because I get scared that I will now react to them again due to skipping them for so long. The struggle is real, and this is the hard truth behind the anxiety of going through treatment.
Next up: EGG WHITE!
It was finally time to start egg white - the last step in egg dosing before I am completely cleared for eggs! (Just a note - most people start with quail eggs before even reaching hen's egg, but testing showed I could handle going straight to hen's egg). After successfully dosing for egg white daily for 5 weeks, I challenged 30mL of egg white at the clinic and was free to eat as many eggs as I want (or don't want), as long as I eat one full egg a day! I FINALLY MADE COOKIES! I've gained 5 pounds since, strictly from the cookies. But hey - I had to make up for the 3 years that I haven't eaten cookies right?
Next up: MACADAMIA NUTS!
I wasn't particularly excited to start macadamia nuts, but I am very excited to finish with all the tree nuts already, and I'm getting close! At this point, tahini was also taken out of my maintenance dosing and I am free to eat it as much as I want or choose to not eat it at all if I want. I am still currently dosing for macadamia nuts, at this specific point I am at 1/8 teaspoon daily! On January 22, I will go to the clinic to challenge macadamia nuts.
After macadamia nuts, I will dosing for pistachio and then cashew. Pistachios are the one and only nut I actually used to enjoy eating, so I'm looking forward to that! After these nuts, the only tree nuts I will have left are pecans and walnuts. As for the top 8 food allergens, I will be done with the tree nuts, I have already dosed for soy, I have no issues with wheat and dairy, and I believe that fish and shellfish will only consist of a challenge and not actual dosing. So the only food I will have left to dose for from the top 8 will be peanuts.
What I really want to be cleared from though are fruits, vegetables, herbs and spices. As of now, I only eat salt, so you can say my diet is very bland. I haven't eaten salad for over 3 years, which used to be one of my favorite foods. I really miss fruits and vegetables, and I miss being able to play with spices in my food, specifically paprika and turmeric. At this point, I have no idea when I will be cleared for these foods, and if they will only consist of challenges or if I will need to dose for them. I am especially concerned for carrots and peaches, but I am taking it one step at a time.
I am confident that I will continue making progress in 2019 and am so excited to add more foods to my diet!
To learn more about my story and how/when I developed all of my food allergies, read the ABOUT ME section.
**This post is NOT sponsored by SoCal Food Allergy Institute or TPIRC.
To learn more about the Tolerance Induction Program: go to https://socalfoodallergy.org/