It is very important for any patient on a restricted diet to adhere closely to the dietary recommendations made by the physician or registered dietitian (RD). Even trace amounts of sucrose-containing or starch-containing foods can have adverse effects and produce symptoms in a person diagnosed with CSID. Any individual or group who has an influence on the diet of a child with CSID (parent, guardian, extended family member, school personnel, childcare provider, etc.) should be educated on the necessity of dietary compliance. No person should tease or coax the patient with CSID into just tasting or trying a food not on the “safe foods list.”
A “safe foods list” or conversely, a “foods to avoid list”, can be a great benefit to the younger patient, teacher, grandparent, and/or friend who is not familiar with the dietary restrictions related to life with CSID. Your physician or RD can help you develop the best list for your personal dietary restrictions. At initial diagnosis, the “safe foods list” may seem small, but with time, more foods can be added depending on how well they are tolerated.
Maintaining wellness depends on strict compliance with these dietary restrictions for both adult and pediatric patients. Families of a patient with CSID may be told the diet is “too difficult” to manage. This may negatively impact the family’s attitude toward the diet from the outset. Parents, siblings, and all persons in the child’s life should share a positive attitude toward compliance. This positive attitude will enhance the patient’s ability to cope with the pressures of strict diet adherence. Without making a big deal about the restrictions, the patient’s diet should become part of the daily ritual of meal planning versus being treated like a chore or interference to “normal” mealtimes.
Employing certain phrases for those who do not fully understand the impact of CSID may be helpful. A suggested explanation could be, “We all eat. Everyone eats. He/she just needs to eat differently to stay healthy.” CSID is a lifelong diagnosis and keeping symptoms to a minimum frees a patient to live a typical daily life without worry.