Why Wasn’t I Diagnosed with Sucrose Intolerance as a Child?
Sucrose Intolerance, caused by Congenital Sucrase-Isomaltase Deficiency (CSID), is a rare disorder that affects your ability to digest table sugar (sucrose) and certain sugars found in starches due to absent or low levels of the digestive enzyme sucrase-isomaltase. Unfortunately, CSID can be difficult to diagnose, causing some of you to live undiagnosed for years. You may be frustrated, asking, “Why wasn’t I diagnosed as a child?” Here are four common reasons why the diagnosis could have been missed at a young age.
1. The symptoms were assumed to be toddler’s diarrhea
The symptoms of CSID are commonly associated with a number of gastrointestinal disorders. Thus, sucrose Intolerance due to CSID is often misdiagnosed, especially in infants. Typically, doctors label unexplainable digestive issues – like gas and diarrhea – as chronic, nonspecific diarrhea, also known as “toddler’s diarrhea.” If you notice your infant’s symptoms aren’t resolving as he gets older, it’s important to discuss the symptoms with your doctor and stay adamant about proper testing.
2. You were misdiagnosed with IBS
As teenager or adult, you may have been misdiagnosed with Irritable Bowel Syndrome (IBS). After all, IBS symptoms – bloating, abdominal pain, gas, and diarrhea – can closely mimic symptoms of CSID. If the prescribed remedies for IBS are not working for you, you may have been misdiagnosed. Have an honest conversation with your doctor about your persistent symptoms. Between the two of you, maybe you can discover the real reason – such as undiagnosed CSID – why you’re experiencing chronic diarrhea.
3. Food allergies were suspected at a young age
Individuals with CSID may have been mistakenly diagnosed with a food allergy or intolerance, including a milk, soy, or egg allergy. However, if removing these foods from your diet still doesn’t provide relief from your symptoms, you’ll want to dig deeper to discover the root cause.
4. You learned to “live with your symptoms”
Unfortunately, many children and adults may learn to just “live with their symptoms” and go months or even years without a proper diagnosis. However, it’s important to note that Sucrose Intolerance caused by CSID is a genetic disease that you cannot “outgrow,” even if symptoms vary from time-to-time. If you still have unexplainable chronic digestive issues – gas, bloating, and diarrhea – stick to your guns until you get a proper diagnosis. Start by making an appointment with your doctor or a gastroenterologist to follow up on and discuss your current symptoms.