Life with Sucrose Intolerance
As an adult with Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID), I have many factors to consider. Life is not as carefree as it once was. To help you better understand what someone with Sucrose Intolerance has to deal with, I’m sharing a list of issues that I have 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, especially holidays and celebrations. I always have to think about what food will be served> Will I be able to eat the food? Should I pack medicine or should I pack food alternatives? Eating out can be cumbersome, too, since 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’m not just a picky eater. I just 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 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. I have a hard time finding someone who can commiserate with my experience, and I 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’m a burden and am bringing down the mood. I also sometimes ask my friends and family to change the food focus at 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 I have not found anyone who fits that bill. I have a binder with information on Sucrose Intolerance that I share with healthcare providers as needed.
- My Sucrose Intolerance 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 can’t make it to the bathroom in time. I also usually have air freshener. Using public restrooms can be very embarrassing since my gastrointestinal symptoms can be odorous. In some circumstances, it’s socially acceptable to poke fun at these symptoms; for me, they are uncontrollable, and it’s very embarrassing when someone makes light of them.
- I have to consider my Sucrose Intolerance in my work setting. I’m sometimes late for meetings or have to miss work due to my symptoms. I’m not using my Sucrose Intolerance as an excuse, but the urgency of my symptoms requires attention. Sometimes, I’m singled out for not eating the birthday cake of a coworker or not indulging in the food in the company break room. It’s 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 I choose to keep my medical information private as much as possible. I have told only a select handful of my co-workers about my medical condition.
As you can see, managing life with Sucrose Intolerance requires some accommodations. I constantly have to advocate for my needs in social, work, and medical settings, while managing embarrassing and sometimes painful gastrointestinal symptoms.