We often hear from families that it took months or even years for their child to be diagnosed with a food allergy-related condition. Parents express frustration that their child had to continue suffering for as long as they did until they were finally diagnosed and treated appropriately. Food allergy-related conditions like Food Protein-Induced Enterocolitis Syndrome (FPIES), Eosinophilic Esophagitis (EoE), or other Eosinophilic disorders are rare and newly recognized disorders, so diagnosis is sometimes delayed.
Eosinophilic Esophagitis was first described in the early 1990’s, so it is a relatively newly identified disorder[i]. Prior to its discovery, many children and adults were misdiagnosed with gastroesophageal reflux disease or dysphasia. In recent years the number of EoE cases has increased steadily due to both increased awareness and prevalence[ii]. The good news is that increased awareness and recognition of EoE today allows the condition to be diagnosed and treated more quickly than in previous years.
Food Protein-Induced Enterocolitis Syndrome (FPIES) is an atypical type of food allergy which affects the gastrointestinal (GI) tract[iii]. Whereas typical IgE food allergic reactions are immediate, FPIES reactions are delayed, so it’s more difficult to establish that the symptoms are caused by food or to determine which food is responsible. Standard allergy tests do not identify FPIES triggers so food allergy may not be considered initially. FPIES is often misdiagnosed as sepsis, metabolic disorders, or abdominal emergencies[iv].
Rare or newly-discovered diseases are more prone to misdiagnosis. Improved awareness has already led to better recognition and diagnosis. Hopefully awareness will continue to improve and better diagnostic techniques will be developed to allow prompt management. How long did it take for your little one to get a diagnosis?
[i] Straumann A. Eosinophilic esophagitis: a bulk of mysteries. Dig Dis. 2013;31(1):6-9.
[ii] ACG clinical guideline: Evidenced based approach to the diagnosis and management of esophageal eosinophilia and eosinophilic esophagitis (EoE). Am J Gastroenterol. 2013 May;108(5):679-92; quiz 693.