Rare Disease Day – What Is Sucrose Intolerance?

Rare Disease Day – What Is Sucrose Intolerance?

Every year, on the last day of February, people in more than 90 countries celebrate Rare Disease Day. The goal: To heighten awareness of rare diseases and their impact on patients’ lives. In the U.S., any disease affecting fewer than 200,000 people is considered rare.

Why do we need a Rare Disease Day?

More than 7,000 rare diseases, impacting 25 to 30 million people in the U.S., are currently recognized by the medical profession. These diseases vary in severity but all take a toll on those who are diagnosed, along with their family members, friends, and loved ones.

When you do the math, you realize that about one in 10 people in the U.S. has a so-called “rare” disease. Unfortunately, there’s usually a lack of high-quality scientific knowledge about these conditions. As a result, patients may be improperly diagnosed, miss out on important treatments, and often feel isolated and alone.

Sucrose Intolerance: A rare disease you might not know about

One of those rare diseases is Congenital Sucrase-Isomaltase Deficiency (CSID), also known as Sucrose Intolerance. Sucrose Intolerance is a small intestine disorder that limits a person’s ability to break down sugars (sucrose) or starches. Sucrose is a naturally occurring carbohydrate often found in produce, especially starchy fruits and vegetables like yams and carrots, and legumes like peas, lentils, and soybeans. It’s also frequently added, in the form of table sugar, to processed foods like ice cream, candy, cereals, and sweetened beverages.

Fewer than one-half of 1 percent of Americans have Sucrose Intolerance, and it affects women and men in equal numbers. Certain ethnic populations are more likely to be affected. For instance, 2 to 9 percent of North Americans of European descent are thought to have Sucrose Intolerance. Still, researchers believe the true number of individuals living with Sucrose Intolerance is higher since it is often misdiagnosed, thanks to a collection of fairly commonplace symptoms.

Symptoms of Sucrose Intolerance

When people with Sucrose Intolerance consume sucrose or starch, they often develop gastrointestinal symptoms like chronic diarrhea, abdominal distention, excessive gas, and bloating. These symptoms can occur regardless of whether the sucrose consumed was of high nutritional quality (apples, beans, or sweet potatoes) or candy, cookies, or junk food. Sometimes diarrhea may alternate with constipation, leading some to believe they have irritable bowel syndrome, a not-so-rare disorder of the large intestine affecting 25 to 45 million Americans.

What to do now

Whether it’s Rare Disease Day, or any day, it’s important to remember that Sucrose Intolerance is more common than you may realize. For those who have yet to reach a diagnosis, take the sucrose intolerance symptoms quiz here.

Persistent symptoms like chronic diarrhea, abdominal pain, bloating, frequent bowel movements, and excess gas should not be ignored. Always discuss persistent gastrointestinal symptoms like these with a gastroenterologist.

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Sucrose Intolerance May Be More Common Than You Think