Our FPIES Journey: What I Learned About This Rare Food Allergy in Babies

I still need time—a lot of it—to fully tell our story. But in short, I was sent home with my baby on palliative care and made the decision not to give up on him. That choice meant navigating so many things on my own, with little guidance. One of those things was Food Protein-Induced Enterocolitis Syndrome (FPIES).

I wish someone had explained what FPIES is, how to recognize it, and how to safely introduce new foods when we first started this journey. I learned through trial and error. Thankfully, I found other moms online who shared their own journeys. Many of whom also struggled to find doctors who even knew about FPIES. I'm so grateful they documented and shared their experiences.

Their openness inspired me to do the same. In this post I’m sharing what I’ve learned along the way, some helpful tips, and what I wish I’d known from the start. If this helps even one parent who’s feeling confused and overwhelmed then it's more than worth it.

So… What Is FPIES?

FPIES (Food Protein-Induced Enterocolitis Syndrome) is a rare type of food allergy that affects the gastrointestinal (GI) tract, primarily in infants and young children. Unlike common food allergies that trigger immediate reactions (like hives or anaphylaxis), FPIES is non-IgE mediated, which means the reaction is delayed—sometimes by several hours—and can be more difficult to identify.

There's still limited awareness and research around FPIES, even among healthcare professionals. Most of what we know has only emerged in the past decade, and many doctors are still unfamiliar with it. Although exact numbers for the U.S. are hard to pin down, one study estimates that FPIES affects approximately 0.5% of children and 0.2% of adults (Nowak-Wegrzyn et al., 2019).

Put simply: FPIES is a rare, delayed-onset food allergy that affects the digestive system—and because it doesn’t involve IgE antibodies, it won’t show up on standard allergy tests.

What are the symptoms?

The hardest part about FPIES is that the symptoms don’t show up right away. In most cases, they begin 1 to 4 hours after a baby eats a "trigger food". This delay can make it hard to connect the reaction to a specific meal or ingredient.

Common symptoms include:

• Stomach cramps

• Vomiting (often severe)

• Diarrhea

• Gas and bloating

• Reflux

• Skin rashes or eczema

• Fatigue or extreme fussiness

• Spitting up

• Irritability

• Dehydration (in more severe cases)

  
  

In some acute cases, babies may become lethargic or pale, and need IV fluids due to dehydration. These episodes can be scary and are often mistaken for stomach viruses or other illnesses.

It’s also believed that for some babies, trigger foods consumed via breast milk may cause reactions—but this varies greatly from child to child.

How is it diagnosed and treated?

Unfortunately, there’s no specific test for FPIES. Because it's non-IgE mediated, traditional allergy tests (like blood or skin prick tests) won’t detect it. Diagnosis is usually based on a detailed medical history, a pattern of symptoms, and how your child responds after removing or reintroducing certain foods.

That’s why keeping a food journal is so important. Tracking what your child eats, and any symptoms that follow, can be a crucial tool for your pediatrician or allergist.

While there’s no cure for FPIES, it can be managed by:

• Avoiding known trigger foods

• Slowly and carefully introducing new foods (with professional guidance)

• Working with your pediatrician or a pediatric dietitian to create a personalized, balanced diet

Many children eventually outgrow FPIES, though the timeline is different for everyone.

I created some free FPIES templates to help you and your little one on this journey. Click here to download

While I’m not a medical professional, I quickly became my son’s primary caregiver once we got home from the NICU. During his stay, he had serious trouble digesting standard baby formula. He suffered from severe acid reflux and frequent vomiting. As his feeding volumes increased, the doctors kept upping his Nexium dosage—but his symptoms did not improve.

On top of that he was struggling to gain .Deep down, I knew something wasn’t right. The treatments were only masking the symptoms, not solving the root problem.

I raised concerns early on, especially about the formula he was given. I had a gut feeling it just wasn’t working for him. While I’m not lactose intolerant, I’ve always limited dairy in my own diet (with the occasional exception of ice cream!). My mom even reminded me that as a baby, I had to be switched to soy milk because I also had trouble digesting standard formula.

Once we got home from the hospital and his symptoms only worsened, I decided to trust my instincts and do what I could with the information I had. He always seemed hungry, but feeding brought him more pain than comfort—there was constant crying, vomiting, and painful gas.

After a lot of late-night research, I started learning more about the different types of proteins in baby formulas and how they can affect digestion. That’s when I decided to try Alimentum (the liquid version). Almost immediately, I saw a difference—his symptoms began to improve.

If you’ve ever used Alimentum, you know how fast it goes—and how expensive it can be. But honestly, it was worth every penny seeing him finally comfortable.

Then there was a formula recall, we couldn't find Alimentum for a while ( seems like there was a shortage everywhere), so I tried a hypoallergenic formula he tolerated it well. We stuck with it for a while, tried a few others in between, and now he's on Lactogen.

Rice Cereal & a Setback

Fast forward a bit—I tried adding rice cereal to his bottle to help him gain weight ( which with what I know now was a terrible idea). It was a disaster. He cried, vomited, and was clearly in pain. I stopped the trial immediately.

Later, during a hospital stay, a nurse suggested trying rice milk, based on a pediatrician's advice. I told her we’d had a bad experience with rice before—but I second-guessed myself and agreed to try it again.

The result was the same. My son reacted badly, just like before.

When the next shift nurse came in, she gently told me, “Next time, trust your mommy instincts.” As a first-time mom, I really needed to hear that. Her words stuck with me—and changed the way I approached everything going forward.

From that moment on, rice and anything with rice derivatives became a red flag. I stopped doubting myself and started advocating more confidently for my son.

Starting Solids & Finding Patterns

When it came time to introduce solids, I focused on high-calorie purees to help with weight gain. Sweet potato was one of the first I tried—healthy and filling. But not long after, he had a tummy ache, vomited, and his reflux flared up again. I started documenting everything: what he ate, how he reacted, and any changes I noticed.

Some foods didn’t trigger issues until after several tries. But over time, I started to notice patterns. I created a list of "safe," "unsure," and "not safe" foods. During my research, I discovered FPIES, and things started to click.

I found out that FPIES involves “trigger foods” and “safe foods”—and that every child reacts differently. However, there’s some consensus on common triggers and low-risk options. I also learned that most kids' digestive systems mature over time, and many outgrow FPIES by around 2 years old.

At one point, the only fruit my son tolerated was pear. If I bought store-bought brands I always chose Beechnut because it had one ingredient: pear.

Many other baby food brands included additives like lemon or lime juice concentrate, which triggered reactions for him. Beech-Nut was one of the few brands that offered simple, clean options without added acids or preservatives, and it quickly became our go-to. ( No this isn't an ad for Beechnut, its just what worked for us)

Here’s what worked for us:

• Start with one ingredient at a time (Stage 1 baby food is perfect for this. Make your own if you can)

• Repeat the same food for at least 3 days, watching closely for any reactions.

• Pause, then reintroduce the food again for another 3 days.

• Begin with low-risk foods like:

  • Watermelon

  • Quinoa

  • Broccoli

  • Pear

  • Avocado

• Avoid high-risk ingredients early on, especially rice, dairy, oats, and sweet potato.

  

The first grain we tried was quinoa after I read about it in an article—and thankfully, it went well. With so few safe foods, I had to get creative. I rotated combinations and kept detailed notes in my phone.

For a while, his safe food list looked like this:

✅ Safe:

• Pear

• Quinoa

• Prune

• Blueberries

• Tapioca

• Broccoli

• Avocado

• 
  

🤷‍♀️ Unsure:

• Apple

• Raspberry

• Sweet peas

• Banana

  
  

❌ Not Safe:

• Rice

• Sweet potato

• Carrot

• Green beans

  
  

Sample Meal Combos We Tried:

• Pear puree

• Broccoli puree

• Quinoa puree (with a little salt)

• Quinoa “porridge” with formula and a sweetener

• Quinoa + broccoli

• Quinoa + pear

• Pear + broccoli (yes, I even tried that combo!)

Eventually, we added avocado and plantain into the mix. Our list of safe foods is still pretty limited, but there’s definitely more variety now than when we first started.

(Side note: he’s officially done with pear—he ate it by the dozens!)

Encouragement for Parents Going Through FPIES

If you’re just starting food trials with your baby and suspect FPIES—you are not alone. Be patient, stay consistent, and most importantly trust your instincts. This process is exhausting and overwhelming but I promise: it does get better.

I also started giving my son a multivitamin recommended by our pediatrician, which helped round out his nutrition. which helped round out his nutrition while we were still working through food trials.

I highly suggest working with a pediatrician, and if possible, a pediatric gastroenterologist or dietitian familiar with FPIES.

And always remember this: you are your child's best advocate.

Helpful Resources:

• CHLA – Introducing Solids for Infants with FPIES (PDF)

• Allergy & Asthma Docs – FPIES Overview

• World Allergy Organization – FPIES Article (PDF)

There’s also a helpful FPIES support group on BabyCenter, and a spreadsheet floating around that lists high- and low-risk foods based on other families’ trials. If I find the link again, I’ll be sure to update this post.

Want to Stay Organized?

I created a few printable food trackers and logs to help you manage your baby's food journey. You can find them here on my site.