In honor of Food Allergy Awareness Week, we’re delighted to share a special Q&A with Dr. John James, an allergist who lives with food protein-induced enterocolitis syndrome (FPIES). Dr. James is a board certified allergist with Colorado Allergy and Asthma Centers in Fort Collins, Colorado. In addition to the diagnosis and management of allergic diseases and asthma, Dr. James has a special interest in food allergy, atopic dermatitis, and anaphylaxis.
While FPIES is widely considered to be a condition of childhood, it can occur in older children and adults. We thank Dr. James for sharing his unique perspective and answering our questions.
What has been your experience as an adult living with FPIES? I did not realize that I actually had FPIES until my mid-30’s. Beginning in college, I started to experience adverse reactions, mainly nausea, vomiting and diarrhea, after the ingestion of seafood. For many years, I thought my symptoms were the result of typical allergic reactions after eating certain seafood such as oysters, clams and scallops. I realized that I tolerated shrimp, crab and lobster, but anytime I would ingest clams, scallops and oysters, I would experience a delayed adverse reaction, typically 2-3 hours after eating these foods. I would just try my best to avoid these foods. I would have accidental ingestions at times and like clockwork, I would have a reaction. I never experienced any skin or respiratory symptoms and never anaphylactic reactions. There was no specific therapy for my symptoms other than letting the symptoms run their course. This would usually take a few hours. Now, I am just very careful not to ingest any mollusks like clams, oysters and scallops. I can ingest crustacean such as shrimp, crab and lobster without any adverse or allergic symptoms, and I have no other adverse reactions to foods.
You bring a different perspective because you are also an allergist. Could you talk more about that? During my fellowship in allergy and immunology, I became very familiar with classic FPIES in children, which is typically triggered by cow’s milk, soy and cereal grains. I encountered many pediatric patients with this disease and became very familiar with the diagnosis and treatment of this disease. This was thought to be a condition that only affected infants and young children. I do not remember encountering this condition in adults until I realized my symptoms were typical for this disease. I started to think about this disorder when I saw adult patients who were experiencing similar adverse reactions, typically to seafood. It became more and more apparent that FPIES could occur in adult patients.
It’s been suggested that the prevalence of adults living with FPIES may be higher than reported, as adults may simply avoid the offending food instead of pursuing a diagnosis. What are your thoughts? I think this is probably true, but there are no well controlled studies in adult patients with FPIES. I do believe it is more common than we have previously realized. Clinical investigations are needed in adults with FPIES to gain a better understanding of the actual incidence and prevalence of this disease in adult patients.
What advice would you have for other adults living with FPIES? Adults who are experiencing delayed and adverse gastrointestinal symptoms (i.e., nausea, vomiting, diarrhea and symptoms of dehydration) following the ingestion of foods, especially seafood, should discuss this with their healthcare provider. Many times, these symptoms are attributed to a gastroenteritis, food intolerance and/or food poisoning. A referral to an allergy specialist can be very helpful in making the diagnosis of FPIES and establishing a proper treatment plan. Specific food elimination is the most effective form of treatment; this usually involves the avoidance of only a few select foods. Systemic anaphylactic reactions are not typically observed with FPIES.
Why are you passionate about working with IAFFPE? Support groups such as IAFFPE can be extremely helpful for patients and their families in dealing with the many challenges that specific diseases present. Navigating through the vast amount of clinical and scientific information can be overwhelming. IAFFPE provides a wealth of information from patients, families and healthcare providers to make this process a much more rewarding experience. Learning from each other makes a huge difference in the successful management of food protein-induced enterocolitis syndrome.
Any words of encouragement for families of young children who have FPIES? I would strongly encourage these families to work with their healthcare providers and an allergy specialist to establish the diagnosis of FPIES and to develop the most effective treatment strategy. Keep pursing this issue until all of your concerns are fully addressed and an adequate treatment plan implemented. Fortunately, some infants and young children do outgrow their reactions and are ultimately able to ingest the foods that previously caused their reactions.