Rare Food Allergy in Children: FPIES

When I first got ready to start my son with solid foods, I was so excited (and a little nervous too!). I would finally get to introduce him to so many different flavors and all the delicious food we love. He’d get to enjoy meals with us, instead of having to eat separately, and it was the first BIG sign of us moving into the next stage of parenting.

And so began ALL the research. I took a deep dive into learning about the best foods to start off with, what to avoid (did you know rice cereal is the top exposure to arsenic in babies?) I looked into the best ways to prep foods, and what I thought would be the most nutritious and best fit for our family. After all, I wanted something that I could use the ingredients we were already preparing for our meals, and I wanted a simple process that I could do without too much effort.

Our First Taste of Solids…

Once I read just about all the baby food articles I could manage, I felt as prepared as I was ever going to be, it was time to get started! I decided to start with carrots. Simple, plain, carrots. A veggie that is incredibly common and packed with vitamin A to help with developing healthy eyesight. Seems like a great choice, right?

Well, it was wrong for us…Within hours after his first, and very minimal, taste of solid food, he was crying uncontrollably. And no, not like a tired baby cry, where they eventually calm down. It was the type of cry where you KNOW something is wrong. Nothing we did could soothe him, he was in pain, and it was agony.

Seeking Help

We talked to he’s pediatrician and were told to avoid carrots because he might have a potential allergy or it could also be something else, so we could possibly try them in the future again. Well, we waited a couple weeks before trying solids again, just to be sure that we were only introducing one new thing at a time.

We tried green beans, and had the SAME result. We waited weeks between each food and each time we introduced something, it seemed like he would have the same reaction: carrots, green beans, sweet potatoes, apples, and more. As a first time mama, it was incredibly overwhelming. This was suppose to be something fun and had turned into a complete nightmare. He was clearly hurting and we still didn’t have any clear answers.

We were finally able to see two different allergists that were able to do some in-depth testing.

Our son didn’t react to how I normally think of when it comes to food allergies: hives, itchiness, swollen, etc.

No, his reaction was delayed and clearly something to do with his digestive system. Well, after ALL of the tests, it turned out he had something called Food Protein-Induced Enterocolitis Syndrome (FPIES), a rare food allergy that affects the gastrointestinal (GI) tract. It’s an allergic reaction to the protein in the food, so as it’s being digested, that is when the allergic reaction happens and can last for hours at a time.

Deep Dive Into FPIES

As soon as we had a diagnosis, I began to research everything I could about FPIES; which surprising didn’t take very long. As it turns out, there isn’t much information out there when it comes to this.

Yes, it is a rare food allergy, but it is also a fairly new one as well. The personal stories I found from other mamas dealing with FPIES in their littles, only led to more questions. There didn’t seem to be a way to cope with it, and every child had drastically different symptoms and triggers.

Today, looking back at what we went through five ago, and again when our 2nd child had FPIES, I can see that this is still an area with so many unanswered questions that can bring a lot of fear and confusion to mamas. Through heaps of late night research and many talks with allergists, pediatricians, and other parents, I was able to better understand FPIES and finally got some answers to all my questions.

And I’d like to share our journey with you.

I am not a pediatrician or an allergist. So I highly recommend you seek their guidance in determining and treating your kiddo. But I am a mom who has gone through this twice. And I know as a new mom, just how scary it can be to not have all the answers. And while I can’t give you ALL the answers, I hope that in sharing my experience, it brings some clarity to your situation and let’s you know that you are not in this alone.

Food allergies can be scary on so many different levels. So I’m here to start the discussion and hopefully alleviate some of your worries. Checkout my other blog posts to find out more on food allergies and how to better cope with them, and as always seek a medical professional for any questions or concerns you have.

Have you experienced food allergies with your kids?