Persistent Digestive Symptoms Could Actually Be CSID
Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare disorder that affects your ability to digest sucrose (table sugar) and maltose, a sugar found in dietary starches, because of absent or low levels of the digestive enzyme sucrase-isomaltase. Unfortunately, it can take months – sometimes even years – to get a proper diagnosis, since CSID symptoms can mimic other digestive ailments.
If you’re suffering from stubborn gastrointestinal (GI) symptoms that simply won’t go away, even after they have been diagnosed and treated, CSID could be to blame. Here are four common reasons behind your possible misdiagnosis, and what you can do to further evaluate your GI symptoms and get closer to a proper diagnosis.
You thought a food allergy was to blame.
At first, many patients with CSID are often misdiagnosed with a food allergy or another type of food intolerance; for example, a milk allergy or gluten intolerance. However, if removing the food in question doesn’t provide the GI relief you are seeking, then it might not be the right diagnosis. Keep urging your doctor to dig deeper and continue to order tests to rule out other chronic conditions.
CSID often mimics other disorders.
Other disorders, such as irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), can have GI symptoms similar to CSID symptoms, such as diarrhea, intestinal gas and abdominal bloating, making it challenging at times to get to the root of the problem. It’s common for the initial diagnosis from your doctor to be incorrect, so remain adamant in challenging your doctor if you aren’t getting relief with his treatment plan. Before you visit your doctor, do your homework and research your GI symptoms. Then ask your doctor to run more tests to help identify what may be going on. After all, ruling out conditions can be just as important as finding the correct diagnosis.
You changed your diet…but it didn’t work.
You’ve already changed your diet, trying everything under the sun—from going 100 percent gluten-free to attempting an elimination diet—but still feel miserable. What gives? While an elimination diet such as the low-FODMAP diet eliminates many types of sugars, it doesn’t eliminate all sources of sucrose or maltose. Therefore, if you have CSID, a low-FODMAP diet will not help you.
As time goes on, you become used to your symptoms.
After months of misdiagnoses, unclear answers from your doctor, and “normal” lab results, you can become frustrated. After a while, you may find yourself becoming used to your GI symptoms despite how irritating they are. But don’t settle for being told your condition is hard to treat (translation: hard to diagnose), and you just have to “learn to live with it.” Rather, ask your doctor to run more tests, which may include an endoscopic procedure to view the small intestine and obtain small tissue samples, or a breath test that may help identify the root cause. It’s also important to note that CSID is a genetic disorder and won’t simply go away, even if your symptoms may be less severe at times.
Think you may have CSID? To discuss further or test if you may have CSID, we recommend you make an appointment with your doctor to evaluate your symptoms.
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