Patients with eosinophilic gastrointestinal disease (EGID) frequently require elemental formula (EF) as a nutritional supplement or as part of their therapy. The goal of this study was to identify perspectives of patients/caregivers on EF use. METHODS: An online survey was administered to EGID patients prescribed EF or their caregivers. Data collected included demographics, indications for EF, duration of use, potential benefits, cost, and quality of life. RESULTS: Data from 207 respondents were analyzed. Mean age of EGID patients was 14.0 years (range 1-61). 79.2% had eosinophilic esophagitis. 85.0% were on dietary therapy, 45.4% on corticosteroids, 45.4% on proton pump inhibitors. 48.3% had been using EF for ≥5 years, 46.4% for full nutrition. 43.5% received EF via feeding tube (fully/in combination with oral feeds). Most common reported EF benefits were ease of digestion (51.2%), decreased pain/inflammation (18.8%), and meeting nutritional needs (15.9%), with high rate of satisfaction with its benefits (mean score 4.2, scale 1-5). Overall experience with taking EF was variable. EF had the most positive impact on patients' relationships with parents (34.3%) and the most negative impact on travel (60.9%). 36.7% stopped EF for some time or missed/skipped feeds, with resultant weight loss (29.0%) and incomplete nutrition (21.1%). Most common barriers to accessing EF were insurance coverage problems (68.8%) and out-of-pocket cost (67.3%). CONCLUSIONS: EF is a mainstay nutritional supplement in the management of EGID patients. EF is medically beneficial but costly to families, with detrimental consequences when interrupted. Ways to improve access to EF need to be addressed in the future.
Recent reports suggest that omalizumab may increase food allergen thresholds and thus provide protection in case of accidental exposures. Additionally, it may be useful as adjunct treatment to reduce adverse events during oral immunotherapy (OIT). METHODS: We report on five high-risk patients with cow's milk allergy (CMA) and asthma who were treated with omalizumab prior to beginning milk OIT. Basophil activation (BAT) was performed before and during OIT. RESULTS: Four males and one female aged 14-24 years were evaluated. All had a history of severe anaphylaxis after accidental milk ingestion requiring injectable epinephrine and 4/5 had required ICU treatment. Omalizumab was administered for 2-24 months prior to OIT. On concurrent omalizumab therapy, initial reaction doses ranged from 20 to 480 mg of cow's milk protein and BAT CD 63% was >30% in the 3 patients tested. There was > 15 fold increase (range 15-25) in the maximal tolerated dose during OIT along with a decrease in induced basophil reactivity (CD 63%). Two patients reached a maximal dose of 7200 mg of milk protein. Despite omalizumab therapy, 4/5 patients required injectable epinephrine during the course of OIT. In one patient, after reaching full desensitization, omalizumab was discontinued on two occasions, resulting in anaphylaxis following milk consumption. Overall, two patients stopped OIT with one also discontinuing omalizumab. CONCLUSIONS: High-risk CMA patients treated with omalizumab retain significant clinical and basophil reactivity to milk. Desensitization is not without significant adverse events. Physicians should be made aware that omalizumab may not be fully protective in high-risk patients.
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