Adults with Congenital Sucrase-Isomaltase Deficiency (CSID) may face unique issues associated with employment and insurance coverage, interpersonal relationships, and medical care.
At some point, you will need to communicate your unique needs and situation to those around you, whether friends and family, those at work, in business meetings, or those in the service and transportation industries. When communicating with others, it is important to choose to keep it positive, keep it simple, and be clear about your needs and expectations. Graciousness is also key. It is best to proactively educate others about the basics of CSID. When explaining CSID to others, using common phrases such as, “Yes, even one cookie can hurt,” can help break down the complexity of the disease to a more commonly understood level.
CSID is a chronic issue that does not go away with gradual exposure or with time. Just as you went through a learning period to fully understand your disorder, other people also need time to learn and adjust. It should not be assumed that people around you instantly get it. Appreciate it when they do gain understanding or show empathy, but you should not expect it.
It may be necessary to use a safe-foods list or a foods-to-avoid list customized to your needs that can be provided for business meetings and other events where you lack control over your food choices. Such lists should be developed in cooperation with a physician or registered dietitian.
