If you are on a restricted diet, it is very important to adhere closely to the dietary recommendations made by the physician or registered dietitian. Even trace amounts of sucrose-containing or starch-containing foods may have adverse effects and produce symptoms in an individual diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID).
Any individual or group that has an influence on the diet of a child with CSID (parent, guardian, extended family member, school personnel, and childcare provider) should be educated about the importance of dietary compliance. No person should tease or coax an individual with CSID into just tasting or trying a food not on their safe-foods list.
A safe-foods list or a foods-to-avoid list can be a great benefit to the younger individual, teacher, grandparent, and friend who is not familiar with the dietary restrictions related to life with CSID. Your physician or registered dietitian may 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 may be added, depending on how well they are tolerated.
Maintaining wellness depends on strict compliance with dietary restrictions for both adults and children with CSID. Families of those with CSID may be told the diet is too difficult to manage, negatively impacting the family’s attitude toward the diet from the outset. Parents, siblings, and all persons in a child’s life should share a positive attitude toward compliance. This positive attitude enhances the child’s ability to cope with the pressures of strict diet adherence. Without making a big deal about the restrictions, a CSID-compliant diet should become part of the daily ritual of meal planning versus being treated like a chore or interference to normal mealtimes.
Using 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. Some of us just need to eat differently to stay healthy.” CSID is a lifelong diagnosis and keeping symptoms to a minimum frees your or your child to live a typical daily life without worry.
