Chapter Two: What is Adult FPIES

When I tell people I have food allergies, they usually picture someone eating a peanut and immediately reaching for an EpiPen.

What I have is very different.

I have Adult Food Protein-Induced Enterocolitis Syndrome (FPIES), a rare, non-IgE-mediated food allergy that primarily affects the gastrointestinal system.

In simple terms, my immune system mistakes certain foods as harmful and sounds the alarms then launches a violent attack against them.

The challenging part? The reaction doesn’t happen right away.

Unlike many food allergies, FPIES reactions are delayed. Symptoms can begin anywhere from one to four hours after eating a trigger food, making it much harder to identify what’s causing the reaction.

Those reactions can include severe abdominal pain, vomiting, diarrhea, exhaustion, and dehydration. In some cases, FPIES reactions can become serious enough to require medical treatment and can even lead to shock. My reactions last for hours and then leave me in pain for days, sometimes weeks.

One of the reasons Adult FPIES is still so misunderstood is because it hasn’t been recognized for very long. The first large-scale study looking at how common FPIES is in adults wasn’t published until 2019, and adult-specific diagnostic criteria followed shortly after. Many healthcare providers have never encountered an adult patient with it.

My trigger foods are the Brassicaceae family - a group of vegetables that many people consider everyday healthy staples. Foods like broccoli, cauliflower, cabbage, kale, brussels sprouts, bok choy, radishes, turnips, rutabaga, mustard, and canola oil will trigger a reaction for me.

It’s strange explaining that vegetables can make me seriously ill. Most people hear “food allergy” and think of avoiding nuts, dairy, shellfish or gluten, not avoiding salad.

We quickly learnt that these items are also ingredients in so many things.

The reality is that Adult FPIES has changed the way I grocery shop, eat at restaurants, travel, attend events, and move through the world. It has required a level of planning and vigilance that many people never have to think about.

And yet, despite all of that, I am grateful.

Grateful to finally have answers after years of searching.

Grateful for the healthcare professionals who listened.

Grateful for the people who learn alongside me.

And grateful that by sharing this journey, maybe someone else who has been told “everything looks normal” will remember that they aren’t imagining their symptoms and continue pushing for answers.

Sometimes the rarest conditions can make us feel the most alone.

I’m learning that talking about them is one way we find each other.

Thank you for being here. 💕