“One of the greatest causes for confusion and frustration in the parent community surrounds the definition of chronic FPIES and whether it is representative of the condition. Whereas acute reactions are more commonly seen and documented in literature, we recognize and highlight the lack of literature representing chronic reactions; this contributes to the dismissal many families face from their physicians when describing symptoms.”
Chronic FPIES has been the subject of confusion and frustration for parents and physicians alike. Unlike acute FPIES, which typically presents with delayed, profuse vomiting, diarrhea, dehydration, and possible shock, the symptoms of chronic FPIES are often more “murky” and can be difficult to distinguish from other conditions.
“Chronic FPIES is an ill-defined condition characterized by intermittent vomiting, watery or mucous diarrhea, poor weight gain, and dehydration… In cases of ‘chronic’ FPIES, the differential diagnosis is even more difficult. The diagnostic boundaries, in particular with other non-IgE-mediated gastrointestinal food allergies are blurred, and it is difficult to differentiate this condition from them. This underlines the need for a precise definition.”
At the International FPIES Association (I-FPIES), we've been working diligently to make chronic symptoms part of the medical dialogue on FPIES. This blog post highlights some of our recent efforts and offers links to new medical literature that has broadened the discussion of chronic FPIES.
Efforts to Educate Physicians
- In March 2014, thousands of attendees at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI) received this attention-grabbing postcard. It is part of our effort to ensure that allergists, immunologists, and other healthcare professionals become familiar with chronic symptoms.
- We recently developed a new resource for physicians: "Clinical Manifestations of FPIES: Acute and Chronic." I-FPIES Medical Advisor Dr. Anna Nowak-Wegrzyn developed this piece to broaden the dialogue on FPIES. Physicians who attended AAAAI received this handout—please share it with your medical team as well!
Chronic FPIES in Recent Medical Literature
In June 2014, a special edition of the medical journal Current Opinion in Allergy and Immunology focused on FPIES. Four of the articles included sections on the topic of chronic FPIES.
- “Differential Diagnosis of Food Protein-induced Enterocolitis Syndrome” includes a section on differential diagnosis of chronic FPIES and discusses the difficulty in distinguishing it from similar conditions.
- “Food Protein-induced Enterocolitis Syndrome from the Parent Perspective” includes a section on chronic FPIES and urges the medical community to explore and define this type of reaction.
- “Clinical Management of Food Protein-induced Enterocolitis Syndrome” includes a case study (#2) of an infant who experiences both acute and chronic episodes.
“Clinical Manifestations of Food Protein-induced Enterocolitis Syndrome” includes a section that describes chronic FPIES and a table that compares clinical and laboratory findings in acute versus chronic FPIES (pictured below).
More Work to Be Done
I-FPIES’s task force has been hard at work developing the first consensus guidelines for FPIES. Chronic FPIES is included in the discussion, highlighting the importance of differentiating related symptoms from other conditions. The guidelines will be released in collaboration with AAAAI in the next few months!
In addition, we will continue to leverage our partnerships with organizations such as AAAAI and the National Organization for Rare Disorders (NORD) to educate physicians and advance the discourse on this poorly understood aspect of FPIES.