Sugar and Starch Free, No Problem

If you’ve been diagnosed with CSID (Congenital Sucrose-Isomaltase Deficiency), you have probably heard about Sucraid, a medication approved by the FDA as a treatment.

I was diagnosed with CSID In 2020, and it was something that played a vital role in helping me find solace as I tried to change my diet to being starch and sugar-free. CSID affects the body’s ability to break down certain sugars, such as sucrose, leading to severe gastrointestinal symptoms like bloating, diarrhea, and abdominal pain. Sucraid is an essential treatment since it provides the necessary enzyme to digest these sugars and alleviate symptoms.

There’s a new problem with both the diagnosis and prescription of Sucraid: They must be accurate to ensure that only patients who truly need it are treated.

The Carbon-13 Sucralose breath test may not be as accurate when it’s the only method used for diagnosis. These breath tests measure our body’s response to sugar substances and help identify whether a person has CSID.

Without insurance, a bottle of Sucraid oral solution costs $9,448.22. For those with insurance, copayments can be between $34 and $5,199, depending on specific Medicare prescription drug plans. The Sucraid Savings Program also offers assistance for commercially insured people, but eligibility criteria include U.S. residency, a valid prescription for Sucraid, completion of a HIPAA form, enrollment in the program, and an income below 200 percent of the Federal Poverty Level.

The breath test is effective, but it’s not foolproof and also has the potential to produce false positive results. One of the issues is that if financial incentives are tied to the testing process, it may encourage an overdiagnosis or unnecessary treatments, and this becomes evident in a recent legal settlement involving QOL Medical and the allegations of deceptive marketing that point to concerns about abuse of breath tests to push prescriptions for Sucraid in patients who might need it.

Patients being misdiagnosed may receive these unnecessary prescriptions for Sucraid, and as many know, Sucraid without insurance doesn’t come as an affordable option and can add to additional medical costs, potential side effects, and additional stress from diagnosis. This can also result in a lack of focus on what may be the actual cause of the patient’s symptoms.

When you’re diagnosed with a CSID diagnosis (especially with these pending charges for places like QOL Medical), it’s always important to proceed with caution. If you’ve begun Sucraid for treatment but found that it hasn’t improved your symptoms, other factors may be at play. Accurate and reliable diagnostic methods are the key to any prescription, and as new studies and technologies emerge–it becomes increasingly important for medical professionals to stay updated on effective and accurate tools to avoid misdiagnosis in patients.

Sucraid can offer life-changing benefits for patients with CSID, but using breath tests as a diagnostic tool for proper diagnosis and ensuring responsible prescribing practices are essential for patient health and the integrity and safety of medical treatments.