FPIES Diagnosis
What is it?
Hello! It has been a minute!
Over this past year, we welcomed a new family member and have been quite busy! Meals haven’t exactly been inspired, so my channel has been somewhat dormant. That being said, I hope the previous Substack posts, recipes, and highlights on Instagram still provide some help and inspiration as you navigate life without gluten for your little one.
Since I last posted, we’ve sadly had two gluten exposures. I posted about this on Instagram, but my kiddo confidently grabbed a cookie at a pot luck and said it was one of ours (it wasn’t). This prompted me to rethink my approach to crowded events, holidays and parties; making sure she is prepared and knows what our food looks like, where it will be located, and even provide signage. Most recently, her school gave her an Abe’s cupcake for a birthday celebration. Most of you are probably familiar with that school safe brand which is allergy free except…wheat.
As we continue to navigate a gluten free life, we were thrown somewhat of a curveball this fall with a diagnosis of FPIES, or, Food Protein-Induced Enterocolitis Syndrome, defined as a non-IgE mediated food allergy of the gastrointestinal system. You can learn more about it here. Specifically, her allergy is to fish, and likely, shellfish. In the spring of 2025, I gave my daughter GF fish sticks which she threw up several hours later in a reaction that looked suspiciously like gluten. I chalked it up to the brand not being truly GF. A few months later, after much cajoling, she took one single bite of baked cod and proceeded to throw up 11 times.
Fast forward to our visit to the allergist, where she tested negative for traditional allergies. Her pediatric GI already suspected FPIES, which was later confirmed by the allergist. The only way to test if she has outgrown it (unlikely with fish), or has a true shellfish allergy too, is to exposure her to the food. It was recommended we wait a few years until she better understands what this means, how it could make her feel, and if she wants fish or shellfish that badly to try (in the event it makes her sick).
I share this in the hopes that if you have been experiencing mystery illnesses or think your child is somehow getting cross contaminated, this would provide an explanation. I have never heard or it before and never would have thought to look it up. Especially since the reaction was so very similar to a gluten exposure.
Have you had any experience with FPIES? Does this add up for any symptoms you’ve been experiencing? Let me know in the comments.