Posted by Catalina Berenblum on July 19, 2018
On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.
Over the next six months, I would observe countless patients with Crohn’s disease being prescribed Exclusive Enteral Nutrition (EEN) - a formula-based dietary treatment that is effective in inducing remission - as an initial treatment. The gastroenterologists I met in Oxford, London and Glasgow all enthusiastically supported their patients using EEN, and the majority of the time patients also met regularly with a registered dietitian. At some centers, steroids were not even offered to these patients -- nutrition was their first and only option for achieving remission.
My personal experience in the US with nutritional interventions in the management of IBD has been extremely different. For eight years, I managed my Crohn’s with a combination of the Specific Carbohydrate Diet (SCD) and EEN. Over the course of those eight years - much of my adolescence and growth periods - my family and I met with a nutritionist only once, and only over the phone. My pediatric gastroenterologists expressed skepticism about the nutritional interventions my family and I wanted to try. My experience is hardly rare - literature suggests that US physicians are less likely than European ones to recommend nutritional interventions for IBD, even though some protocols, like EEN, can be as effective in inducing remission as corticosteroids. As for the SCD, many physicians I met with expressed doubt about its effectiveness because of lack of clinical data. None of them offered to refer me to a nutritionist to help me manage and succeed in implementing my diet.
Because of my personal experiences, I’m excited that researchers, clinicians, parents, and patients that are part of the ImproveCareNow Network are collaborating to examine dietary interventions, specifically the SCD, and their role in treating and managing IBD. The PRODUCE study, which stands for Personalized Research On Diet in Ulcerative Colitis and Crohn’s Disease, is studying how the SCD and a modified SCD affect IBD inflammation and symptoms. Patients alternate diets over the course of 34 weeks and track their symptoms, with full nutritional support and ample resources along the way. Through my advocacy work, countless families mention their desire to try nutritional interventions or to have support from the medical establishment for the nutritional treatments they’re on -- the results from PRODUCE could help these patients and families receive exactly the support they desire. The SCD is a healthy, complete diet which has a lot of support anecdotally from patients, but a study like PRODUCE is needed to determine if the SCD can be included as an evidence-based treatment strategy for IBD.
If you or your center’s IBD team have any questions about the PRODUCE study or want to learn more about the SCD, see the links at the bottom of this post, or contact ImproveCareNow.
Patients and families should have the support and evidence they need when opting for nutritional interventions for IBD, and the PRODUCE study is a critical step in making that happen.
--
Stay in the LOOP - sign up for updates and never miss a post!
Learn more about the PRODUCE Study on our website
Access PRODUCE study resources on the NiMBAL website