Frequently Asked Questions

Sucraid^® (sacrosidase) Oral Solution is an FDA-approved drug for use as an oral enzyme replacement therapy for genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID). Sucraid^® replaces the activity of sucrase, which is the digestive enzyme that breaks down sucrose (table sugar). Sucraid^® may lessen the gastrointestinal (GI) symptoms associated with CSID.

You should take Sucraid^® the way it was prescribed by your doctor. The recommended dosage is 1 mL (1 full measuring scoop) per meal or snack for patients who weigh up to 15 kilograms or 33 pounds, and 2 mL (2 full measuring scoops) per meal or snack for patients that weigh over 15 kilograms or 33 pounds. Each dose of Sucraid^® should be mixed in 2 to 4 ounces (60 to 120 mL) of water, milk, or infant formula. Half of the mixture is taken before the start of the meal or snack and the other half of the mixture is taken about halfway through the meal or snack. Do not mix Sucraid^® with fruit juice or hot beverages as they may reduce the effectiveness of Sucraid^®.

The length of time that Sucraid^® remains active during a meal may vary depending on several factors, such as how long it takes for your stomach to empty and what you had to eat. If your meal lasts longer than an hour, you may need to take another dose. Sucraid^® isn’t absorbed into the body, so it can’t be stored up for later, which is why you need to take it each time you eat.

Sucraid^® should not be heated since heating may deactivate the enzyme and reduce its effectiveness. Sucraid^® should be mixed in cold or room-temperature water, milk, or infant formula. To be safe, hot beverages should not be consumed until the end of the meal.

There are several options for transporting Sucraid^® bottles when you are away from home. You may speak with a Sucraid^® specialist at QOL Medical, LLC or a pharmacist at the specialty pharmacy to learn how to safely transport Sucraid^®. Patients who weigh more than 33 lb (15 kg) have the option of using Sucraid^® single-use containers when they are away from home. Sucraid^® single-use containers are stable for three days at room temperature 59ºF to 77ºF (15ºC to 25ºC).

Suggestions for traveling with Sucraid^® can be found on Taking Sucraid^®. When traveling by plane, it is best to plan ahead. You may want to call the Transportation Security Administration (TSA) for any special requirements for taking Sucraid^® on an airplane. A Letter of Medical Necessity for traveling with Sucraid^® can be found on the Sucraid^® website. Have your doctor sign a copy of the letter for you to take with you through airport security. It is safe for Sucraid^® to pass through the X-ray machine at the security gate.

Every patient’s situation is different. To learn more, you may speak with a representative at the specialty pharmacy at 1-800-705-1962.

You should discuss this question with your doctor. Most people need to continue using Sucraid^® in order to replace the digestive activity of the deficient sucrase, which helps digest sucrose and avoids or lessens GI symptoms associated with CSID. As people gain more experience with their diet, they may not need to use Sucraid^® with every meal or snack.

Sucraid^® replaces sucrase, which helps break down sucrose to prevent the symptoms associated with poorly digested (malabsorbed) sucrose, which may cause a variety of GI symptoms associated with CSID, not just diarrhea. Some patients with CSID do not have diarrhea, but may complain of excessive gas, bloating, stomach pain, reflux-like symptoms, or constipation.

Every person with CSID is different, but most people need to make some changes to their diet to avoid experiencing any GI symptoms. Sucraid^® replaces the digestive activity of sucrase and helps digest sucrose (table sugar), but does not replace isomaltase, an enzyme that helps digest starch. For that reason, most patients need to adjust the amount of starchy food they eat.

People who are allergic to or have a sensitivity to yeast, glycerin (glycerol), or papain should not take Sucraid^®. People with diabetes may take Sucraid^®, but should speak with their doctor before starting the first dose. Since Sucraid^® helps break down sucrose into glucose and fructose, there could be changes in their blood glucose levels.

Please see the package insert for a full listing of possible side effects. If you experience any suspected side effects from Sucraid^®, you should stop using Sucraid^® and speak with your doctor. Sucraid^® is not absorbed into the body but passes through the GI tract and is then excreted. There have been no reports of overdosing with Sucraid^®; however, you should always take Sucraid^® as prescribed by your doctor. If you have any questions about your medication dosing, please consult your prescribing physician or the specialty pharmacy at 1-800-705-1962.

Sucraid^® does not contain any preservatives. So, once the bottle has been opened, it should be discarded after 4 weeks to avoid the potential for bacterial growth.

If Sucraid^® is accidentally left out of the refrigerator at room temperature (up to 80°F) and was not in direct sunlight, you may put it back in the refrigerator and continue using it. If the bottle was left out longer than 24 hours, in direct sunlight or in temperatures above 80°F, it should be thrown away. If the bottle is accidentally left out a second time overnight at room temperature, it should be thrown away. In other words, a bottle of Sucraid^® can only be left out overnight at room temperature one time before it should be discarded.

There are currently no known drug-drug interactions with Sucraid^®.

A child fed only breastmilk may or may not have CSID, but because there is no sucrose in breastmilk, they would not experience CSID-related symptoms until other foods are introduced into their diet.

You should contact your physician to review your options. As CSID is a genetic disease, there is the possibility that other family members may be living with CSID as well. There are tests that can be ordered by your doctor to help determine whether you and other family members have CSID.

Please consult the package insert to find information about adverse events that have been experienced by patients taking Sucraid^®. QOL Medical is not aware of any long-term, adverse effects of using Sucraid^®.

Yes. Diet and Sucraid^® therapy are both important for the treatment of CSID. The goal with diet and Sucraid^® therapy is to return to as near normal a diet as possible without experiencing the GI symptoms associated with CSID. Your best resource for diet information is on Nutritional Support. You may also speak with a clinical specialist to learn more about CSID and Sucraid^®.

You can find a wealth of information on CSID, Sucraid^®, and diet on Nutritional Support. While QOL Medical does not employ a dietitian, they do have clinical specialists who can answer general questions that may not be addressed on the website.

QOL Medical has extensive information regarding CSID and managing the disease through therapy, which is available on this website or call 1-800-705-1962.

A Letter of Medical Necessity for Travel can be very helpful when traveling with Sucraid^®. A sample letter can be found in the Resources section. If you have other questions regarding travel, you can discuss with your doctor.

Information on CSID can be found by talking to your doctor or on Sucraid.com. If you have further questions, you can call 1-800-705-1962.

Details on dosing and administering Sucraid^® can be found on Taking Sucraid^®. In addition, there is a video that explains how to dose and administer Sucraid^®. If you have further questions, you can discuss with your doctor or contact 1-800-705-1962.

There is a video, “How to Travel with Sucraid^®,” on Informational Videos with tips on how to handle Sucraid^® in a school setting. If you need further assistance, you can discuss with your doctor.

Information about the genetics of CSID can be found on Genetic Prevalence. If you need further assistance, you can discuss with your doctor.

The breath test will help determine if your body is properly digesting sucrose, which is table sugar. Patients who don’t tolerate sucrose may have gastrointestinal symptoms such as gas, abdominal pain, bloating, and diarrhea. Talk to your doctor to determine if this test is right for you.

No, you do not have to write anything on the tubes. You may add your name to the test tube labels if you like, but it’s not required. However, you must complete and return the Breath Test Form with your kit once you complete the test, and mail it back to the lab.

Yes, you can still complete the test if it has been longer than 10 days.

Your healthcare provider should have completed that portion of the form for you since the NPI is the specific ordering number for your healthcare provider. Please call your healthcare provider’s office and they will provide the NPI number so you can complete the form and mail the test in to be processed.

The ¹³C-Sucrose Breath Test is provided at no charge. This is a test ordered by your healthcare provider who should not charge or bill for the test.

The silver packet in the breath test kit contains 20 grams of sucrose, which is table sugar that contains the natural, stable isotope of carbon, ¹³C.

A how-to video for the breath test is available on YouTube. In the YouTube search field, type “C13 Breath Test How-To Instructional Video” and you will find it.

Results are faxed or emailed to your healthcare provider within 48 hours of the lab receiving the kit. Check with your healthcare provider, who can give you your results.

Once you complete the test and place it in the mail, the kit will arrive at the lab within 2 to 3 business days.

Unfortunately, tracking information is not available. Because the kit was prepaid and pre-addressed, there should be no problem with the lab receiving it. Check with your healthcare provider after 5 business days to see if they have received your results.

If you have been diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID), which may also be called Sucrose Intolerance caused by CSID, it means your body is not making enough working forms of two digestive enzymes – sucrase and isomaltase – needed to digest (break down) foods that contain sucrose and starch.

The food you eat has to be digested into small particles in order to be absorbed into the blood stream and transported around to various parts of the body.

Specific enzymes work on specific types of food. For example, sucrase is needed to breakdown sucrose (table sugar), while isomaltase is needed to breakdown starchy foods.

Without enough sucrase-isomaltase, sucrose and starch are not broken down properly and may lead to gastrointestinal symptoms (GI) like gas, bloating, pain, and diarrhea. Some people with CSID may experience constipation, reflux, and/or weight loss.

No, carbohydrates include multiple sugars, as well as starches and fibers. Only carbohydrate foods that contain sucrose or maltose may be difficult for you to digest. Because the ability to tolerate foods containing sucrose or maltose varies from patient to patient, it is important for you to identify the foods that cause your gastrointestinal problems. Your doctor or a registered dietitian can help you evaluate your diet to determine the right amount of sucrose and/or starch for you.

Sucrose, a specific type of sugar, and starch are the two types of carbohydrates that can cause problems if you have CSID. For more information about CSID, Sucraid^®, and diet modifications, talk to your doctor. Additional diet-related resources can be found on Nutritional Support. For more information about CSID, Sucraid^®, and diet modifications, talk to your doctor.

It is best to ask your doctor or registered dietitian to help you plan a diet that is right for you. The goal for people taking Sucraid^® is to eat as near normal and as healthy a diet as possible without the return of gastrointestinal (GI) symptoms. With Sucraid^®, you should be able to include sucrose-containing foods in your diet. Sucraid^® does not replace the enzyme isomaltase, so you may need to cut back on the amount of starchy foods you eat. Additional diet-related resources can be found on Nutritional Support. If you need further help with your diet, talk to your doctor or a registered dietitian.

Read the section on “Getting Started” in the “Sucraid^® and Diet Therapy” guide for infants, children, and adults. This diet resource can be found in the Resources section. For most of you with CSID, the first step is to start taking Sucraid^® as directed with meals and snacks while following your usual diet.

When first getting started, it may be helpful to write down what you eat and any gastrointestinal symptoms you experience. The diet guide walks you through the first four weeks of starting therapy with Sucraid^®. Additional diet-related resources can be found on Nutritional Support. If you need further help with your diet, talk to your doctor or a registered dietitian.

Having multiple diet restrictions can feel overwhelming. It’s best to work with a registered dietitian to help with meal planning, to avoid over-restricting your diet, and to make sure you are meeting your nutritional needs.

Diet resources for people with CSID can be found in the Resources section. Additional diet-related resources can be found on Nutritional Support. If you need further help with your diet, talk to your doctor or a registered dietitian.

If you have been diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID), you may have difficulty digesting foods that are high in sucrose (table sugar) and starch. Treatment may include enzyme replacement and diet therapy. It is helpful for you to understand which foods are high in starch, because you may need to alter the type and/or amount of starch you eat. Here are some FAQs about starch.

Sucrase-isomaltase is a digestive enzyme in the small intestine that is needed to break down (digest) sucrose and starch. Without enough sucrase-isomaltase, sucrose and starch don’t get broken down.

If you have CSID, undigested sucrose and starch continue traveling from the small intestine to the large intestine. There, the body breaks down these undigested carbohydrate fragments through a process called fermentation, which leads to excess gas, bloating, abdominal pain, and diarrhea.

Some people use the terms carbohydrate and starch interchangeably, but that’s not exactly right. Starch is just one type of carbohydrate. The chart below shows the different types of carbohydrates, including starch.

The carbohydrates that are impacted for patients with CSID include sucrose and maltose (sugars) and starch, as highlighted above in red. The sugars maltose and glucose are produced when starches are broken down. This chart shows that you do not have to avoid all carbohydrates or all sugars.

Here is a chart that lists some foods that are high in starch.

Any foods made from the high-starch ingredients listed above, such as bread, crackers, pasta, cereal, cakes, cookies, and tortillas, will also be high in starch. Always review the nutritional facts and ingredients list.

The enzyme sucrase-isomaltase that’s needed to break down starch is usually low if you have been diagnosed with CSID, but there are other enzymes that also help to digest starch, such as amylase and maltase-glucoamylase. Therefore, most patients with CSID don’t need to eliminate all starch-containing foods in their diet. You should talk to your doctor to determine the right diet for you.

It’s hard to provide an exact amount of starch that you may tolerate. It’s best for you to determine your own level of tolerance to starch. Determining your level of tolerance is often done through a process called trial and error. Work with your doctor to determine the appropriate amount of starch for you.

Some individuals born with CSID find that as they age and grow, they are able to tolerate more starch in their diet. Here’s an example of how your level of tolerance may increase with age. Diet data was collected for a small study of patients diagnosed and treated for CSID. Based on their reports, here is a summary of their starch intake, organized by age groups.

For comparison, the average starch intake for Americans 2 years of age and older who do not have CSID is approximately 129 grams per day.² You should talk to your doctor about whether a diet change is right for you.

1. Boney A, Elser HE, Silver HJ. Relationships among dietary intakes and persistent gastrointestinal symptoms in patients receiving enzyme treatment for genetic sucrase-isomaltase deficiency. J Acad Nutr Diet. 2018;111(3):440-447. doi:10.1016/j.jand.2017.11.005
2. U.S. Department of Agriculture, Agricultural Research Service. 2014. Nutrient Intakes from Food and Beverages: Mean Amounts Consumed per Individual, by Gender and Age, What We Eat in America, NHANES 2011-2012. www.ars.usda.gov/ARSUserFiles/80400530/pdf/1112/Table_1_NIN_GEN_11.pdf

There is not adequate data to categorize which starches may be easier to digest if you have CSID. It’s best to determine which types of starch may work best for you. Once you determine how much starch you can tolerate, you can experiment with the different types of starch to see if you tolerate some better than others. It’s important to try a variety of starchy foods such as potatoes, rice, quinoa, lentils, grains, pasta, bread, cereal, crackers, beans, peas, and corn. It may help to work with a registered dietitian who can help monitor and evaluate your starch tolerance.

Starch is a polysaccharide that is broken down (digested) into the disaccharides maltose and isomaltose. Sucrase-isomaltase is the enzyme needed to break down maltose and isomaltose into glucose. Without enough sucrase-isomaltase, the final step to break maltose and isomaltose into glucose is not complete and may contribute to gastrointestinal symptoms. Minimizing the amount of starch one eats will reduce the amount of maltose and isomaltose that your body needs to digest.

Maltose is also found naturally in a few foods such as sweet potatoes or as an added ingredient such as malt, brown rice syrup, and corn syrup solids. These ingredients are added to many processed foods such as cereals, candies, and infant formula.

In a small diet study, maltose intake was associated with an increase in gastrointestinal symptoms in patients with CSID. The foods that contributed the most maltose to the diet included cereals, sweet potato chips, pancake syrup, tortillas, and peanut butter bars.¹

If you are having unexplained gastrointestinal symptoms, talk to your doctor to determine if you need to reduce your starch intake or look closely to see if there are hidden sources of maltose in your diet.

1. Boney A, Elser HE, Silver HJ. Relationships among dietary intakes and persistent gastrointestinal symptoms in patients receiving enzyme treatment for genetic sucrase-isomaltase deficiency. J Acad Nutr Diet. 2018;111(3):440-447. doi:10.1016/j.jand.2017.11.005

Gluten-free does not mean starch-free. Gluten is a protein, not a carbohydrate, so it is not a starch. Gluten is found in wheat, rye, barley, and triticale (a cross between wheat and rye), but these grains also contain starch. If you have CSID and also have celiac disease and are on a gluten-free diet, you need to be aware that gluten-free foods may still contain starch.

For example, potatoes are gluten-free, but they contain starch. Gluten-free bread is free of gluten but may contain starch in the form of whole-grain or brown-rice flour, tapioca starch, cornstarch, potato flour, or rice.