What is FPIES?

FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

This is my definition of FPIES, defined by my own research in: medical journal articles, other families living through FPIES I 'meet' on the support groups and, of course, my own son. You can learn more about my research in FPIES here on this blog, and at The FPIES Foundation website.

Sunday, June 19, 2011

Key Points from The Guidelines for the Diagnosis and Management of Food Allergy in the United States: Summary for Patients, Families, and Caregivers.

A publication by the National Institute of Allergy and Infectious Diseases

This publication was developed for patients, families and caregivers based from, The Guidelines for the Diagnosis and Management of Food Allergy in the United States: Report of the NIAID Sponsored Expert Panel, released in December, 2010 and written to provide medical professionals with the most up-to-date clinical advice on how to care for patients with food allergy.    A panel of experts developed the Guidelines based on recent scientific publications of food allergy.   An outline of this document was covered in a previous post here: New Guidelines for Diagnosis.
Key points from this publication specific to Non-IgE- mediated food allergy are:
·         The Guidelines include definitions of food allergy and related disorders, with recommendations for diagnosis and management.

Food Allergy Prevalence and Associated Disorders:
·         Defines Food Allergy “an adverse health effect arising from a specific immune response that occurs reproducibly on exposure to a given food.”
·         Definition of Food Allergen, “parts of a food or ingredients within a food (usually protein) that are recognized by immune cells”.  It goes on to clarify that most food allergens cause reactions even after they have been cooked or digested but that some allergens (most often fruits and vegetables) can cause allergic reactions only when eaten raw.  And oils (such as soy, corn, peanut, and sesame) may or may not cause an allergic reaction, depending on how it is processed.
·         Defines IgE and Non-IgE.  “Non-IgE mediated- the symptoms are the result of interaction of the allergen with the immune system, but the interaction does not involve an IgE antibody”.
·         Conditions that can occur with food allergy: “if someone has food allergy, he or she is more likely to have asthma, eczema, eosinophilic esophagitis (EoE), or exercise-induced anaphylaxis”.

Diagnosis of Food Allergy:
·         Food allergic reactions may be IgE-mediated or Non-IgE-mediated, or both.  The chapter, on page 9 gives some guidelines for when your healthcare provider should consider food allergy diagnosis.
·         Table A: Symptoms of Allergic reactions caused by food is on page 10.  You may notice similar language to the PIC article written for Non-IgE Food Allergy as The Guidelines are keys in our references for that information and table provided.
·         “How should your healthcare professional diagnosis Non-IgE-mediated food allergy?” is covered on page 16.  Examples given: Eosinophilic GI diseases (EGID)- clarifying that EoE is a mixed IgE/Non-IgE-mediated disorder; Food Protein Induced Enterocolitis Syndrome (FPIES); Food Protein-Induced Allergic Proctocolitis (AP); Allergic contact dermatitis (ACD); and Systemic contact dermatitis.  The coinciding guidelines, within The Guidelines, is given with brief descriptions of these disorders here.
·         Table C, on page 17, gives tests to diagnosis Non-IgE-mediated food allergy.

Management of Nonacute Allergic Reactions and Prevention of Food Allergy:
·         Avoidance of the food allergen following diagnosis of IgE, Non-IgE, or food allergy in combination with eczema, allergy, or EoE, is the safest way for management of food allergy at this time.
·         EoE, eczema, asthma may have influences not related to food allergy.
·         Children diagnosed with food allergy should receive nutritional counseling, growth monitoring, and training on understanding ingredient lists.
·         Know that there is a law, the U.S Food Allergen Labeling and Consumer Protection Act of 2004 that “requires food labels to list which of the eight major food allergens (milk, egg, peanut, tree nut, soy, wheat, fish, and crustacean shellfish) are present as ingredients in prepared foods.  However the law does not require or suggest wording for warning labels, such as “may contain trace amounts of nuts” or “may be prepared in a facility that also uses nuts”.  The inclusion of these warning labels is voluntary.
·         There are currently no medications available to prevent and treat allergic reactions caused by foods.   Oral immunotherapy is currently being studied.  There are active clinical trials: http://www.clinicaltrials.gov
·         Recommendations, including a helpful table, for vaccines and egg allergy on page 20-21.
·         Discussions on prevention of food allergy on pages 22-24.

Diagnosis and Management of Anaphylaxis Caused by Food
·         Symptoms and treatment of anaphylaxis (IgE) allergy, including a Sample Anaphylaxis Emergency Action Plan

·         Listed on page 30 gives a glossary for the many terms used in this summary that may be new to the reader.

It should be noted that the Guidelines for medical professionals are “a resource to guide clinical practice and to help develop educational materials for patients, their families, caregivers and the public.  They do not override your doctor’s responsibility to make decisions appropriate to your circumstances”.
The Summary for Patients, Families and Caregivers can be viewed at the website below, and printed or you can request a copy to be mailed from NIAID.  I strongly suggest you read it and become empowered with the knowledge you need to manage food allergy for your family, in your doctor’s office, and in your home.   It is great progress to see these key points of Non-IgE allergy being recognized and discussed as important in the diagnosis of food allergy for our children.
The Summary can be viewed here: Summary for Patients, Families and Caregivers

Thursday, June 16, 2011

Food and Symptom Logs & Journals

Journals/logs are an important tool for the delayed reactions of Non-IgE Allergy.

Journals have been incredibly helpful.   The logging can be tedious but it is very reflective- which is incredibly helpful for seeing larger patterns to the chronic nature of FPIES.  It is particularly helpful, almost critical, to do them during food trials.  

Here are some examples of ones I have used:













Food Trial
Total oz.

Tuesday, June 7, 2011

FPIES: Video Tributes

FPIES is currently a clinical diagnosis based on symptoms.  There is currently no test for it.  The diagnosis has come a long way since this mother created this video: FPIES: Not your typical food allergy.  A video created by a mom desperate for help and answers to her sons violent reactions.  It is the graphic video of her son having a reaction.

Awareness has grown since this video was made, in large parts likely due to her putting the video on YouTube for others to learn and share.   I know it was educational for me and my family with our son's reactions because nothing could have captured it better than if we had recorded one ourselves.  Thankfully a challenge such as this, that would have been the diagnostic criteria a few years ago, is not needed with the increase in awareness and better understanding of this Non-IgE Allergy.   With an experienced MD, a history of symptoms and reactions is often sufficient for this clinical diagnosis.  Removal of the offending protein(s) with resolution of symptoms also confirms the diagnosis.    It is hopeful that, wth further research, there may one day be diagnostic tools available for this type of food allergy.

I was inspired by the knowledge gained from this mom's experience, I wanted to share our own FPIES story- in hopes that it too, could help another family along this road.   Where the above video captures an FPIES to shock reaction, our video highlights pictures of our son's first 2 years.  It outlines our struggles in our son's "atypical" FPIES responses.  It can be viewed here.

Saturday, June 4, 2011

FPIES in FAAN Newsletter, April-May 2010

This article was printed in a newsletter put out by FAAN.  I have copies of it because it was the article that spurred the research into FPIES more for our son, before the time of his diagnosis.  It was written by a Mt.Sinai physician that has also written other articles on FPIES, Dr.Anna Nowak-Wegrzyn. 

Please excuse my poor copy, but I thought it is worth sharing any article on FPIES since there are so few still at this time!