Traveling with CSID: A Brief Introduction
Imagine your body has a team of tiny workers responsible for breaking down the food you eat. Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare genetic disorder where two of these key workers, the enzymes sucrase and isomaltase, are either missing or don't work properly.
These enzymes are crucial for digesting sucrose (found in table sugar, fruits, and many processed foods) and certain starches. When someone with CSID eats these foods, the undigested carbohydrates travel to the large intestine, where they ferment. This process is the source of uncomfortable and disruptive symptoms like chronic diarrhea, bloating, abdominal pain, and excessive gas.
The Travel Dilemma: Planning a Trip with CSID
How CSID Affects Travel
Traveling with CSID requires careful planning and a bit of extra luggage. The primary challenges are tied to diet and sometimes medication.
1. The Dietary Detective Work
Finding safe food on the go can feel like a game of chance. Sucrose is everywhere—in sauces, dressings, baked goods, and even some meats. When you're in a new place, you can't always know what's in your food, which makes eating out a significant risk. This can lead to flare-ups that can quickly derail your trip. However, this challenge just makes you a world-class food investigator, mastering labels and communicating your needs to discover delicious, safe local cuisine!
2. The Medication Mission
The main treatment for CSID is an enzyme replacement therapy called Sucraid (sacrosidase). The catch? It typically requires refrigeration. This means you can't just toss it in your bag. Traveling with it involves planning for a cooler or insulated bag with ice packs.
Luckily the pharmacy now offers Sucraid in individual, pre-measured vials that can go up to three days without the refrigeration so talk to your doctor or the pharmacy about this option!
Navigating airport security can also be a challenge, as you may need to show a doctor’s note to explain the medical necessity of carrying liquids and cooling gels. View this not as a burden, but as an opportunity to master the logistics of travel, turning you into a highly organized and prepared explorer capable of going anywhere!
In short, traveling with CSID takes some extra caution. From scouting out restaurants with safe menu options to ensuring your medication stays safe, it all adds a layer of complexity to the journey. But with the right preparation, you can still explore the world and enjoy your travels with confidence.
The reason I write this is because I have CSID and its been a learning curve for me but I don’t let it stop me in my everyday life let alone when I travel!
There will be some more posts about CSID to come.
