Update: Issues with Maintenance Foods, Adding Ketotifen & More!
My treatment journey in the Tolerance Induction Program, although absolutely amazing, has not been the smoothest. I have been documenting most of my journey on my blog under the category "My Treatment Journey".
As most of you know, I developed the majority of my food allergies in my early 20s. For those who are interested, you can read my FULL STORY HERE.
In general, I actually haven't had many issues with dosing foods. Most of my dosing has gone quite smoothly with no symptoms or reactions. For those who have been following me for a while now, you probably remember the same two foods I do: pistachio and peanut. With pistachio I had that crazy spicy taste when dosing, and then with peanut, I ended up baking the dose at one point, but once I reached one actual peanut, I was fine and escalated all the way to the 32 peanut challenge.
So where have I been having issues? MAINTENANCE! I have two types of maintenance foods: those that I never dosed for, that I just challenged in the clinic and went straight to maintenance, and then those that I did dose for, successfully passed the final challenge, and were then added to maintenance. I even have some foods that have dropped off from my maintenance list over the years!
Foods that went straight to maintenance: Applesauce, Oranges, Chickpeas, Lentils, Coffee, Chocolate, Vanilla, Cranberry, Banana, Cooked Carrot, Mint
Foods that I dosed for that then moved to maintenance: Almonds, Soy, Hazelnut, Eggs, Pistachio, Cashew, Pecan, Walnut
Foods that dropped off from maintenance: Sesame, Pine Nuts, Macadamia, Brazil Nut
There are of course some maintenance foods that I consistently eat without any symptoms/issues. This includes oranges, chickpeas, coffee, chocolate, vanilla and eggs.
I am also fine with cooked carrot, but as carrot was my first and one of my worst food allergies, I am still overcoming anxiety to be able to eat it.
When it comes to the other foods, especially the tree nuts, although I was able to dose them without any issues, I have symptoms while eating them. I have separated them into three categories.
Foods that make me itchy: Applesauce, Banana, Cranberry
Foods that cause strange sensations in my throat: Lentils, Mint, Pistachio, Cashew, Soy
Foods that cause a sore throat plus slight coughing: Almonds, Hazelnut, Pecan, Walnut
As you can see, none of them actually cause anaphylaxis or anything remotely life-threatening. But it causes me to have heightened anxiety and become unsure if the reaction will escalate or not? Usually, I do not take any meds and I let it pass, which typically takes about 4 hours. There have been a couple of instances where it has gotten too severe for my liking, and I ended up taking Benadryl and prednisone.
So I stopped eating them. I've been in the program now for 3 years, and this should not be happening. It definitely IS very nice to know that I'm not going to go into anaphylaxis to these foods from cross-contamination or even if I ingest a small amount, but the goal of the program is free eating of all foods. And I am determined to get there.
But in reality, I cannot go to class with symptoms like this (I am currently completing a Masters of Science in Immunology). I also cannot go to the research lab with symptoms like this - imagine trying to stay very still looking into a microscope for cell patterns or handling mice while your throat feels funny, you're slightly coughing, and you're internally freaking out that it might escalate to anaphylaxis.
So the amazing Dr. Randhawa, along with Dr. Farr, have come up with a new plan for me, which I am excited to start and hoping that it works. I was put on a new medication called Ketotifen. It is a mast cell stabilize, which will reduce my mast cell permeability threshold, essentially stabilizing histamine release from mast cells. It does have a different mechanism than a typical antihistamine, which is why I will be staying on my daily Xyzal while taking Ketotifen twice per day.
After about three days on the Ketotifen, I will begin eating a couple of tree nuts that have dropped from my maintenance: Brazil Nut and Macadamia. After about a week, if I have no issues, I will start again on Pistachio and Cashew.
Be on the lookout for an update on reintroducing the four foods that are now part of my new plan!
I believe that everyone with food allergies should have the knowledge to properly advocate for themselves or their child.
Without all of the information, advocating for your food allergy child (or for yourself) would be almost impossible.
That's why I started my membership program.