Food allergy mom and advocate, Hillary Tolle Carter, shares her family's oral food challenge journey to find food freedom — the ups, the downs, and the reasons why food allergy families should take heart and have hope.
I have a love/hate relationship with oral food challenges. On the one hand, they are the definitive way to know whether or not my children are actually allergic to a food or not. But on the other hand, they are stressful, time consuming, and scary if they end in a reaction. Between my two boys, we have been through a whopping 25 oral food challenges, so I have lots of experience to share. Here are takeaways from our journey along with exciting news about a potential light at the end of the food allergy diagnostic tunnel.
Before we dive in, let’s review the basics. What exactly is an oral food challenge? According to the American Academy of Allergy, Asthma & Immunology, “An oral food challenge (OFC), or feeding test, is a medical procedure in which a food is eaten slowly, in gradually increasing amounts, under medical supervision, to accurately diagnose or rule out a true food allergy. OFCs are usually done when a careful medical history and allergy tests, such as skin and blood tests, are inconclusive. The OFC is a more definitive test because it will show whether the food ingested produces no symptoms or triggers a reaction.”
In our case, food allergy came into our lives with a horrifying bang when my two boys reacted within a few months of each other. My oldest, Owen, reacted to his first bite of peanut butter at two and a half years old; my youngest, Grayson, had an anaphylactic reaction to his first bite of banana at six months old. We were bewildered and terrified. Our pediatrician sent us to an allergist, who ran extensive IgE blood panels on both boys. Nearly everything we tested for came back positive – Owen for peanut and all tree nuts (and later legumes), and Grayson for peanut, tree nuts, dairy, wheat, egg, soy, banana, mango, kiwi, and most seeds and legumes.
We pushed forward for more answers. According to Food Allergy Research and Education (FARE), “About 50-60 percent of all blood tests and skin prick tests will yield a ‘false positive’ result. This means that the test shows positive even though you are not really allergic to the food being tested.”
A false positive rate that high is confusing and concerning, especially when it comes to finding safe food for your children to eat. So, this is where our OFC journey began. When Owen was four years old and Grayson was two years old, we had our first OFCs. Owen passed hazelnut, and Grayson had an anaphylactic reaction to wheat. While we were thrilled with Owen’s success, it was such a tough start to have Grayson suffer through a “fail,” the term usually used when someone has a reaction during an OFC.
We took a long pause after that initial OFC. We were all too traumatized after Grayson’s reaction to move forward. He also suffered from eczema and environmental allergies, which made it tough to keep him off antihistamine. If you are an OFC veteran, you know you can’t take any antihistamine for about a week before your test. That’s easier said than done for most allergy kids!
Over time, we gathered our strength, and we pressed on. Fast forward six years (yes, it’s taken that long!), and OFCs have changed, and in many ways, saved our lives. Owen has passed hazelnut, almond, walnut, pecan, macadamia nut, pine nut, chestnut, shrimp, soy, sesame, and flax seed. He failed an OFC to green pea a few years ago but was able to tolerate a low dose amount in a recent re-test. Grayson has passed coconut, flax seed, sweet potato, mustard, soy, sesame, walnut, pecan, almond, and avocado. We recently attempted baked egg and stopped early on due to a stomachache, but we were relieved to not deal with an anaphylactic reaction.
These “passes” have had huge benefits to our family. We now have tree nuts in our home, with the exception of cashew and pistachio. From a health standpoint, I’m thrilled to have a variety of proteins, healthy fats, and a wide range of nutrients in my boys’ diets now. And, more than anything else, I am grateful for any level of fear we can lower with a longer list of safe foods.
BUT! Holy moly, it took SIX YEARS to get these answers! That’s 100 hours of our lives just spent in the doctor’s office doing OFCs – if you consider that each OFC is usually around four hours long. That doesn’t even count the hours driving back and forth, the time on the phone scheduling the appointments, the additional appointments for bloodwork and skin testing, and the time prepping for all these appointments.
After all those hours, and years, and dozens of OFC appointments, I’ve learned some takeaways I hope will be helpful to you:
1. You are your own best advocate.
You are most likely not a medical professional, but you most definitely know your child (or yourself!) best. Educate yourself on all things food allergy so that you have a seat at the head of the table when it comes to making decisions for yourself or your child. My favorite resource for accurate, up-to-date information is FARE.
2. Remember that all doctors, even the smartest, most amazing ones, are only human.
Ask questions, request information, challenge the status quo. If you feel like you are not being heard, making any progress, or able to get an appointment, move on! There are truly outstanding allergists out there; you just have to find them. You absolutely want to be at a practice that regularly does OFCs, so that you have that option available to you when bloodwork and skin testing look promising.
3. Sometimes you need to push, and sometimes you need to rest.
Life is all about balance, right? The same is true with food allergies. Over the last six years, we’ve gone through periods where we have leaned in, booked multiple appointments, had several OFCs, and tried lots of new foods or safe food brands. And then, we’ll hit a wall and be over it. We will take a few months to just live our lives, keep everything the same food-wise, and rest. It’s so important to move forward, and it’s equally as crucial to take time to just enjoy life as it is.
4. Try to not look at an OFC “fail” as a fail.
When your child has a reaction during an OFC, I know it’s hugely discouraging at best and terrifying at worst. I’ve been there, and I get it. However, I always tried to see it as information instead of a fail… and information is power! Knowing the truth about an allergy in a safe medical setting is certainly better than being surprised at home or at a restaurant with a first-time reaction. Take time to heal from a negative OFC experience, but try to see the silver lining of knowledge.
5. Celebrate every win.
Whether you passed an OFC, outgrew an allergy, or even found a new safe food brand that works for your family, celebrate it! Food allergy can be hard, and it’s so important to train your brain to look for the positive. We are really big on gratitude in our family, as I’ve found it to be the antidote to anxiety. Celebrating every victory along the way is a hugely helpful (and fun!) way to outweigh the setbacks.
6. Give yourself grace.
This is my number one point of advice for food allergy parents across the board. I’m going to say it again – Give Yourself Grace. We could all look back and wish things were different, wish we or our children didn’t have food allergies, wish we hadn’t given them that unsafe food, wish we had moved on from that allergist sooner, and on and on. There is just no value in any of that. I’m all for learning from our past so that we can be better moving forward. But please give yourself permission to let go of judgement and the “coulda shoulda woulda,” which serves no purpose but to make you feel bad. Managing food allergies is not easy, and we are all doing our best. Chin up, my fellow parents. We’ve got this!
And now… I have hope that help is on the way! FARE has launched the FAITH Challenge, a multi-million-dollar competition designed to promote the development of an innovative and compassionate food allergy diagnosis. Topline, FARE is driving momentum to end the OFC and find a quicker, safer, more effective way to diagnose food allergy. For more information on OFCs and the FAITH Challenge, check out the “OFC 101” video I created with FARE.
Oh, the oral food challenge. What a journey. The good, the bad, and the hope that one day soon we’ll have a much better option for food allergy diagnostics. At the end of the day, it’s all been worth it. I’m grateful for where our path has led us so far, and as always, I can’t wait to see what’s next.
About the Author: Hillary Tolle Carter is a corporate communications specialist with 20 years of media, public relations, and advocacy experience in a career that has spanned agency, corporate, and non-profit roles. Hillary serves on the Board of Directors for Latitude Food Allergy Care and the Board of Governors for Food Allergy Research and Education (FARE). She is the host of Take Action! with Hillary Carter, a YouTube series produced in collaboration with FARE. She chronicles her food allergy parenting journey at hillarytollecarter.com and on Instagram @hillarytollecarter.
Images: Courtesy of the Carter Family