Most people think about food allergies as hives or trouble breathing. IgE reactions typically cause these types of allergies. I learned that food allergies could present in different ways. In my son’s case, a purely gastrointestinal reaction. His food allergy is caused by food protein enterocolitis syndrome or FPIES.
May is food allergy awareness month, and I wanted to share my family’s story to raise awareness of this less common food allergy.
When my son was born, we decided to formula-feed him. By the time he was a week old, I had noticed his bathroom habits were different from my previous experience, exclusively pumping for my daughter. Every time I gave him a bottle, it went right through him. He was eating more than the average baby his age but couldn’t seem to hold it in and wasn’t gaining weight.
He didn’t gain any weight between three and five weeks old despite drinking large amounts of formula. He had diapers tested for blood (a symptom of a cow milk allergy), which were negative. He was, thankfully, otherwise a really chill, wonderful baby. At five weeks old, We put him on a specialized dairy-free formula, and he thrived. He got fat and happy. His pediatrician and GI doctor thought this was likely a typical cow milk sensitivity and to reassess in the future.
Because my older child had a hives reaction to eggs as a baby and because of the need for dairy-free formula, we had our son allergy tested prior to starting solids. His blood test was positive for egg and low positive for milk. We continued life with alternatives until a follow-up test showed we could do a food challenge for eggs and milk.
On the day of his milk challenge, he happily ate a muffin and passed with flying colors. Of course, until my husband pulled into our driveway a few hours later, and my son started vomiting all over his car seat. He seemed otherwise ok. We called the allergist to report this, and she said, “Yep! He has FPIES!”
Now, because of my medical background, I had somewhat suspected this previously because of two ED visits for vomiting that would not stop. The first time, my son was a baby, and grandma was babysitting. Based on his food diary that day, we thought he got a “bad pouch.” We figured he was sick the second time at daycare because he was acting tired. Come to find out, in both of these instances, he had ingested a milk product.
Cue the medical mama doing a literature review on everything FPIES, looking into sub-specialists, and anything I could do to learn more. I learned the protein in milk acts like food poisoning to my poor little guy, causing him to “expel” the poison 1-4 hours after ingestion. Then he gets sleepy, passes out for an hour, and then wakes up generally back to normal.
Weird, right?
From my review, this is almost always a non-life-threatening allergy unless the vomiting causes a fluid imbalance. Also, the low positive blood test was likely a false positive, as this doesn’t show up in blood work. A food challenge is the only way to diagnose and test whether he grew out of it.
It took a long road, but we finally got a diagnosis. He also grew out of his egg allergy, which opened up many food doors. He’s five now and failed a milk challenge last year. We will test again at seven if he wants to. Will he grow out of this? I’m not sure. But in a way, we feel lucky. This could be anaphylaxis. I will take feeling left out of a pizza party to not have to worry about him losing his airway because of an accidental ingestion.
I share our FPIES story to bring awareness to this less common food allergy and to encourage parents to advocate for a diagnosis for their child.
Likely in part due to my medical background, this problem was diagnosed promptly and without too many exposures. I also share this story to say that living with a food allergy and living well is possible. We found dairy-free Texas toast, donuts, and even pizza pockets.
FPIES is our diagnosis, but it doesn’t define us. Hopefully this will help another food allergy family feel less alone and more validated in their story.
