It’s not often we get to hear a real-life experience from a person suffering from Sucrose (sugar) Intolerance. Joella decided to share her candid story with us on what it’s like living with this condition.
As an adult with Sucrose (sugar) Intolerance also known as Genetic Sucrase-Isomaltase Deficiency (GSID) and Congenital Sucrase-Isomaltase Deficiency (CSID), there are many factors to consider. Here are things that someone with this disorder has to think about and handle frequently.
- Planning is a huge part of my life. I have to plan my meals and food choices every time I eat. Much of life in America is based around food, such as holidays and celebrations. I always have to think about what food will be served, if I can have it, should I pack medicine or should I pack food alternatives. Eating out can be cumbersome as I have to talk to the wait staff about food ingredients. Traveling can also be hard because I typically need access to a refrigerator and snacks. I am not just a picky eater- I have to be careful with what I eat.
- Life with Sucrose Intolerance is isolating. Although many people are on special diets these days, few people understand Sucrose (sugar) Intolerance. They think I can just avoid treats and sweets. The reality is I have to be careful with most fruits, some veggies and most processed food. Sucrose is in many hidden sources. have a hard time finding someone who can commiserate with my experience and have yet to meet someone in person who also has sucrose intolerance. Sometimes I have to miss social events because I don’t feel well. Many times my family and friends are understanding but sometimes I feel like I am a burden and am bringing down the mood. I also sometimes ask my friends and family to change the food focus in a social event. Some people are open to suggestions but others resent the fact that my presence requires plan changes.
- I am forced to be the expert in working with some medical providers. Most doctors are not experienced with sucrose intolerance so I sometimes feel alone in this journey. It took me many months to find an experienced nutritionist who could help me figure out the best diet for me. I keep a detailed food log most of the time so that I can figure out the issue if I have breakthrough symptoms. I have searched in my local area for a physician who is an expert on sucrose intolerance, but as of yet, I haven’t found someone who fits that bill. I have a binder with information on sucrose intolerance that I share with healthcare providers as needed
- My symptoms can be embarrassing. No one wants to talk about diarrhea, gas and bloating but this is my reality at times. I often have toilet paper, a change of undergarments and extra clothes with me just in case I don’t make it to the bathroom in time. I also usually have air freshener with me since using public restrooms can be very embarrassing as my GI symptoms can be odorous. In some circumstances, it is socially acceptable to poke fun at GI symptoms, but these are uncontrollable for me and very embarrassing when someone makes light of them.
- I have to consider my Sucrose (sugar) Intolerance in my work setting. I sometimes am late for meetings or have to miss work due to my symptoms. I am not using my sucrose intolerance as an excuse, but the urgency of my symptoms require my attention. I also am sometimes singled out for not eating the birthday cake of a co-worker or not eating the food in the company break room. It is not that I don’t want to celebrate or participate, it’s just that the consequences are not worth it. I have obviously shared my medical condition with my direct supervisor, but other than that, I choose to keep my medical information private as much as possible. I choose to tell only a select handful of my co-workers about my medical condition.
As you can see, managing life with Sucrose (sugar) Intolerance requires some accommodations. I constantly have to advocate for my needs in social, work and medical settings, while managing embarrassing, and sometimes painful GI symptoms.