Food allergy anxiety, especially during desensitization treatments, is something that is not very openly talked about.
The Tolerance Induction Program is by far one of the things in my life that I am most thankful for. The fact that I have been able to desensitize to so many foods, allowing me to expand my diet and not have to worry about anaphylaxis for certain foods anymore, is priceless.
Going through the program is not easy though - it takes time, effort, and causes anxiety. The success most definitely makes the struggles worth it, but the struggles are not something that should be ignored.
If you follow along my stories on Instagram, you probably know that I have an issue with pistachio where I experience a spicy sensation while eating my dose. It tastes as if I had just eaten black pepper. I know what pistachios taste like, as I used to eat them as a child, and this was definitely not how I remember them.
I don't experience any other symptoms - no itching, no swelling, no cough - literally just a spicy sensation that resolves on its own with a couple sips of water and within a couple of minutes.
After three days of dosing with this spicy sensation, I was getting a bit anxious so I emailed Dr.R who instructed me to bake the dose into something rather than eat it with melted chocolate like I usually do.
For the next three days, I dosed with the pistachio baked into a cookie, and the spicy sensation wasn't as strong, which made me feel more comfortable. The fourth day though, the spicy sensation was stronger for some reason which made me extremely nervous for the next day: my updose to 250mg of pistachio.
I like to be transparent so I will admit, I was actually really nervous to updose. I guess it's because this spicy sensation is causing me to be a little on edge, since I haven't experienced something like this with any of the other nuts I have dosed for (brazil, almonds, hazelnuts, pine nuts, macadamia).
Before eating the updose, I ate a sweet potato which I have been eating regularly. It made my throat feel slightly dry which is typical for me after eating sweet potatoes, but definitely doesn't help the anxiety. I then began to take a few tiny bits of the cookie with the 250mg of pistachio in it. I immediately felt the spicy sensation. I felt my nose getting stuffed up as well and my throat felt weird, which I couldn't tell if it was from the sweet potato still or from the pistachio.
I tried to just take a deep breathe and relax, but I started having a full blown panic attack. I had eaten about 30% of the cookie at this point.
My husband looked at me and tried to reason with me, saying that for the past week I have eaten 100mg of pistachio without any reaction besides the spicy sensation, and I had only eaten 30% of the cookie, which means that even though this cookie contained 250mg of pistachio, I probably haven't even eaten 100mg which I know my body can handle!
But I still panicked because my nose felt completely swollen, I couldn't breathe through my nose and the top of my throat felt tight (like where your nose connects to your throat). I was hyperventilating at this point, which I'm sure was not making the situation any better.
I could not calm myself down, no matter what I did. So I ended up taking a small amount of Benadryl, and it did help. An interesting fact about Benadryl is that it used to be used as an anti-anxiety medication years ago as it has a calming effect, so the fact that it helped makes me question if it actually helped an allergic reaction that was happening, or if it helped my anxiety.
I also took Mylanta and an additional Zantac (which I already take daily) because I have severe acid reflux and my acid reflux can sometimes cause weird symptoms like chest pain, tight throat, even nasal congestion.
It took me about a full hour before I was able to calm down again and think rationally. At this point, I had Benadryl, Zantac and Mylanta in my system. I had not eaten anymore of the cookie - and I gave up on the rest of the dose for that night. The severe anxiety attack took so much energy from me, by the end of this hour not only was I so upset about what just happened, but I was exhausted. I emailed Dr.R to inform him of the situation and I went to sleep.
The next day, I couldn't stop thinking about dosing again that night. I was on edge the whole day, and I didn't even want to dose. Dr.R had responded to my email and told me to continue with the dose that night, but to mix it with something carb heavy - such as a muffin rather than a cookie.
I was expecting him to to tell me that I will need to lower the dose back down, so I was surprised by his email, and it in fact made me even more anxious because I didn't want to try the 250mg again. But if I don't trust my doctor and follow his protocol, then what am I doing in this program right?
I had already baked all the doses for the week into cookies, so I decided to make a "cookie sandwich" by placing the cookie in between two slices of bread to make it more carb heavy.
As the day came to an end, the time to dose was here, and I was so scared and sad that I was just laying in bed and I felt like crying. I couldn't handle another night of symptoms and anxiety, it was too much for me emotionally. I was exhausted. I didn't have the energy.
But this was no way to deal with the problem. This wasn't going to get me anywhere. I gave myself another 10 minutes to sulk and then I snapped out of it. I decided I was physically and mentally going to prepare for symptoms and be ready to take action.
I got out of bed and took a hot shower with a lot of steam because I wanted to ensure my nasal passages were clear. I even used a saline nose spray to clear them out. I then put on comfortable, relaxing clothes and made a plan.
I grabbed my Benadryl, my EpiPens, my prednisone, and my Mylanta and I put them all out on the coffee table, ready for easy access. Instead of bringing out the Zantac, I just took a second one before my dose (I am allowed, even recommended, to take up to 4 a day, so doing this is fine for me). I didn't need acid reflux to confuse me with allergy symptoms!
I then even went so far as to measuring my blood pressure and heart rate, which were normal, just so that I would be able to compare if something went wrong. I then brought my action plan and anaphylaxis symptoms list to the table (I have both printed out and on the fridge) so I can read them over if I get any symptoms.
The last thing I did was make my husband look at my tongue and lips and even my throat, with his phone flashlight so he could compare if any symptoms developed. I did have a bump on my lip, which looked like it was caused by dryness on my lips, so now we would know that specific bump was from before dosing and not caused by the pistachio.
The last thing I did was plug my phone into the charger so that if I had to call 911 it would have battery since it was running low. When I say I prepared, I really mean I was ready in every single aspect. I was going to do this, and I was ready to deal with anything that came my way.
Here is the worst part of it all: after all of that worry and sulking, and after all of that preparation, I of course had ABSOLUTELY NO SYMPTOMS. I mean, not even the spicy sensation that I have felt with every single dose since starting the process with pistachio.
I ate the whole cookie, in small pieces over a period of about an hour due to anxiety, wrapped in bread for extra carbs, and had literally zero issues.
Obviously I am so happy that my dose went so well, but like seriously?! The one day I am completely prepared, physically and emotionally to deal with symptoms, nothing happens, but the days that I am completely unprepared, I experience symptoms. Why does this happen.
I guess I will never know if the night I had symptoms was due to an allergic reaction or acid reflux or even just anxiety. I am just so glad that Dr.R really listened to my long email that I sent him with all my symptoms and confusion, and then came up with a solution that helped me move forward.
To learn more about my story on how and when I developed all of my food allergies, click here.
To read a summary about all the foods I desensitized to in 2018, click here.