What is FPIES to ME?

FPIES, Food Protein-Induced Enterocolitis Syndrome, is a rare type of food allergy.
  • FPIES is not like a “typical” food allergy and does not usually involve hives/itching or difficulty breathing
  • “Typical” (IgE) allergic reactions usually happen right after eating a “trigger” food but FPIES reactions happen a few hours or more after eating a “trigger” food
  • Each child affected by FPIES will react to one or more “trigger” foods.
  • Reactions involve the digestive system (stomach, intestines, etc.)
  • During a reaction, a kid can vomit, have diarrhea, have bad stomach aches and/or cramps.
  • During a reaction, a kid may also feel dizzy, weak, scared and very very tired. It is important to tell the closest adult how you are feeling if you are having an FPIES reaction.
  • A kid may need to go to the hospital emergency room during an FPIES reaction. Bringing FPIES information to the hospital during a reaction can help the doctors there to better help you!
  • Each kid with FPIES is different— a reaction for one kid may be a little different from a reaction for another kid.

FPIES is rare, which means that not many kids have it. Because it is rare, adults and kids might not know about it. It can be tricky to talk about FPIES to others.We want to hear from you!

Write to us and share how FPIES affects you and your daily life. Submit your thoughts to:

Email: contact@thefpiesfoundation.org

Please write “What is FPIES to me?” in the subject line

Via Postal Mail:
The FPIES Foundation
Re: What is FPIES to ME?
PO BOX 304
Stewartville, MN 55976

Defining the Terms– FPIES in Kid-Speak

A rare type of food allergy that causes reactions to “trigger” foods. Reactions involve the digestive system.

A negative reaction to a food/environmental trigger

A medical doctor with special training in helping people affected by allergies

When a doctor looks at the symptoms you are having and the results of any tests you may have done and figures out which medical condition might match this information

A medical professional who helps people make sure that their diets (the things they eat and drink) are as healthy as possible

A medical doctor with special training in helping people who need help with their digestive systems

The digestive system

A procedure to look at the digestive system and to look for any unhealthy tissue or anything unusual

Still wanting to learn more?

Check out our website’s glossary of terms for more definitions and detailed descriptions. Some of the definitions may be a bit difficult to understand. If you have questions about any specific terms, make a list of the words to bring to your next doctor appointment. You can ask your doctor to help you better understand!

Get Talking!

Your doctors are there to help you and your family better understand how to manage FPIES.

 If you have questions about your diagnosis, or if you do not understand something about your medical care, speak up!

If you have a hard time speaking up in the appointment, write your doctor a letter to give to him/her at the appointment with your questions, or even ask your doctor for his/her email and have a conversation that way.

You are a very important member of your treatment team!

Page published: Sept.11, 2013. Last update: Jan. 24, 2018. Copyright © 2013, The FPIES Foundation