It all led up to this moment, the oral challenge! From my first visit to the allergist in 2017, I knew what I wanted to see if I could add any foods to my diet. Luckily, my skin prick and blood test results showed that I would be able to challenge five foods: almonds, Brazil nuts, peas, lupine, and sesame.
I was nervous about the oral challenge, but not as worried as I had been for the skin prick. I honestly think that I was excited the day was finally coming and hopeful that I would pass at least one (fingers were crossed for all) of the foods. I was most eager to try sesame. Even if I would fail sesame, I was hoping to find out a threshold and perhaps be able to add in foods that have the ‘may contain sesame’ label, which is a lot of things here in Germany.
Double Blind Oral Challenge
The oral challenge I did was not what most people get to experience since you it typically happens at the allergist’s office. My oral challenge was a double-blind test that was scheduled to take place at the hospital. I would be staying at the hospital for three nights and four days.
The double-blind oral challenge is the ‘gold standard’ of oral challenges, and I was fortunate to undergo this since I was at the Allergy Center Charité. The way a double blind works is I don’t know what sample contains an allergen and I don’t know what allergen is being tested. The person giving me the sample also doesn’t know if it includes the allergen. The answers are sealed away and only opened if I have a severe reaction.
During the challenge, I have to report any symptoms I feel and how they change (better or worse). I’m hooked up to an IV drip, in case of anaphylaxis the nurses are ready to treat me with epinephrine. I also have my auto injectors on me all the time (even in the bathroom) in case anything happens.
For each food challenged, I eat five samples that get larger in quantity. The samples are timed out and eaten over a 3 hour period. The samples I got were very sweet and chocolate flavoured, it was a funny texture similar to eating raw rolled oats with random crunchy bits. The idea is to mask the allergen, so I wouldn’t know if it is in there or not.
My Oral Challenge Results
Let’s jump right to what happened. On day one I ate seven samples and had a mild reaction to the last sample. I got an itchy and hot tongue, face, ears and neck, and felt nauseous. All the symptoms passed in around an hour. Day one was declared a success.
Day two started out great since I had a pretty good sleep despite being in the hospital, plus day one went rather well. And I love chocolate so didn’t mind the idea of eating chocolate all day. Right after eating the second sample my stomach started to itch and became covered in hives. A few minutes later I felt like I was going to faint, my heart felt like it was racing, I was slightly disoriented and had a sense of panic. At that point, I said to my fellow oral challenge buddy that something was not right and the nurses rushed over. The other symptoms I got were itchy and hot ears and face, I felt like there was a frog in my throat, and my nose also started to run. Later I got stomach cramps, and for about an hour and a half, I had waves of nausea.
Once I started to react, I had two doctors and a nurse standing by me. One doctor was talking me through the reaction helping me calm down. I was mentally calm, but my body was doing all sorts of reacting. The doctors continuously reminded that they could give me medication at any second, I needed to keep letting them know what I was feeling, but I needed to know that the moment they give me any form of medication the whole challenge would be called off.
It was a weird feeling to be sitting there, having an allergic reaction, and getting upset that I would not be able to continue if I took medication. I learnt how very stubborn I could be at that moment. I was determined to sit through the reaction to be able to proceed with the other challenges. I really wanted to know about sesame!
They put me on pause to see how the reaction would progress. It took about three hours for the symptoms to go away. My stomach felt extremely sensitive, but I was almost fully recovered.
The most disappointing news came when they told me they had to stop the challenge. During my reaction, they had to open the envelope to see if it was indeed a sample with an allergen and not a placebo. The doctor also took blood during the reaction to see if I reacted – the answer was yes. Plus my body was too sensitive to continue.
It was upsetting that I had a) reacted, b) wasn’t going to continue, and c) I was starting to feel all the emotions I get when I’ve had an allergic reaction, denial begins to set in. All I wanted to do was go home, but I had to stay overnight at the hospital for observation in case of a biphasic reaction. I would be released one day early.
I had mentally prepared myself for a reaction, but you never really know how you will feel until you have one. What I wasn’t ready for was the frustration from the challenge being stopped.
What I Challenged
So what did I end up challenging over the two days?
Day one: Samples 1 and 2 were placebos. Samples 3-7 were a mixture of almonds and Brazil nuts that were administered in higher and higher doses. The last sample contained 21 grams of almonds.
Day two: Sample 2 contains 1g of peas.
What does this mean?
It means that I passed the almond and Brazil nut challenge and can now eat small doses of them at home, as long as I haven’t done any strenuous activities within 6 hours, consumed alcohol or taken aspirin. I have to eat them almost every day to desensitise my body. I will have more about this in my next post – I still haven’t eaten an almond, and it’s been over a month.
Unfortunately, I failed the pea challenge. Since peas are related to peanuts and lupine, they can officially diagnose me with a peanut, pea and lupine allergy.
I was disappointed I wasn’t able to challenge sesame seeds. The head doctor doesn’t want to go ahead with testing them at the moment. We will reaccess in October. For now I will continue to avoid sesame seeds and ‘may contain sesame’ items.
The Emotional Side of an Oral Challenge
Doing a double-blind oral challenge feels so wrong when you first start because you are blindly eating something that you or the person giving it to you have no idea what it contains. When you go your whole life questioning everything you put in your mouth, eating something without being able to ask what it contains is a freaky thing.
The best part of the challenge is since you don’t know what you are eating, so you have no way to psych yourself into believing you are eating an allergen, thus ‘reacting’, a.k.a having a panic attack (something I’ve done in the past). One reason I wasn’t nervous about doing the oral challenge was that the psychological aspect of a reaction was eliminated. This way I could trust my body 100%.
Sometimes I doubt how severe my allergies are. This comes from so many factors, like people not fully believing me or going so long without a reaction I start to question how bad they are. This denial even comes up after a reaction when I wonder if it was all in my head. The double-blind challenge showed me that the reactions are real and not in my head. Having reacted to 1g of peas was also a good reminder that everything I do to stay safe is so I never have to experience a reaction again.
The last part of my allergy journey will explore life after an oral challenge and how managing my allergies has changed.
Was there anything I missed that you wanted to know? Please share in the comments below.
Disclaimer: This blog post is my story and not intended as medical advice. I will do my best to give accurate information about a food allergy testing and treatments. Please talk to your doctor to learn more about the right path for you.
Kortney is your typical atopic triad! She manages asthma, eczema, environmental and food allergies. Kortney is a co-creator of the online community Allergy Travels and co-host of The Itch Podcast. She wants to spread joy in a community that can easily see the hard side of life with atopic disease and believes that you can have a full life with food allergies, it may just be lived a little differently!