Frequently Asked Questions Regarding Sucraid® (sacrosidase) Oral Solution

  1. What is Sucraid®?

    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.

  2. How much and how often do I need to take Sucraid®?

    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 mLs (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 mLs) 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®.

  3. Once I take a dose of Sucraid®, how long does it remain active?

    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.

  4. I read that Sucraid® should not be heated or mixed in hot beverages. Can I drink hot beverages like coffee or tea with my meal?

    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.

  5. How do I take Sucraid® when I’m away from home, at school, or at work?

    There are several options for transporting Sucraid® when you are away from home. You may speak with a Sucraid® specialist at QOL Medical, LLC or a pharmacist at US Bioservices to learn how to safely transport Sucraid®.

  6. Since Sucraid® has to be refrigerated, how can I travel with it?

    Suggestions for traveling with Sucraid® can be found on the Sucraid® website: https://www.sucraid.com/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.

  7. Will my insurance cover the cost of Sucraid®?

    Every patient’s situation is different. To learn more, you may speak with a representative at US Bioservices at 1-833-800-0122.

  8. Will I have to take Sucraid® for the rest of my life?

    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.

  9. Most of the information about CSID talks about diarrhea. I don’t have diarrhea. Will Sucraid® still help me?

    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, burping, or constipation.

  10. Will taking Sucraid® allow me to eat anything I want?

    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. QOL Medical has a registered dietitian on staff who is available at 1-800-705-1962 to assist patients with diet and Sucraid® therapy.

  11. Are there people who should not take Sucraid®?

    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.

  12. Are there any side effects from taking Sucraid®, and is it possible to overdose on the medication?

    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 US Bioservices at 1-833-800-0122.

  13. If I keep Sucraid® refrigerated, why does it have to be discarded after it has been opened for more than 1 month? Does it go bad?

    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.

  14. I accidentally left my Sucraid® bottle on the counter overnight. Should I throw it out?

    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.

  15. Will Sucraid® interact with any of the medications I take?

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

  16. How do I administer Sucraid® when feeding with breastmilk?

    There is no sucrose in breastmilk, so you do not need to administer Sucraid® when feeding your baby breastmilk. The sugar in breastmilk comes from lactose.

  17. My child takes Sucraid®. Other family members have similar symptoms. Should we be tested? How do we get genetic testing?

    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.

  18. Are there any long-term, adverse effects of using Sucraid®?

    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®.

  19. Is diet important for patients taking 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. You may speak with a registered dietitian at QOL Medical to learn more about the diet modifications that may be best for you.

  20. Having a lifelong disorder and using Sucraid® seems a bit overwhelming. Do you offer any resources for support?

    QOL Medical has a peer coach who can provide empathy and support from an experienced caregiver perspective. QOL Medical also has extensive information regarding CSID and managing the disease through therapy, which is available at www.SucraidASSIST.com.

Congenital Sucrase-Isomaltase Deficiency (CSID) and Frequently Asked Questions (FAQs) about Starch

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.

  1. Why is starch a problem?

    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.

  2. What exactly is starch?

    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. This chart shows that you do not have to avoid all carbohydrates or all sugars.

  3. Which foods contain starch?

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

    Food Groups High in Starch Examples of Foods High in Starch
    Starchy Vegetables corn, lima beans, peas, and potatoes
    Grains barley, oats, rice, and wheat
    Legumes beans and peas (such as chickpeas, black beans, kidney beans, soybeans, and black-eyed peas); and lentils

    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.

  4. So, I can’t eat any foods that are high in starch?

    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.

  5. How much starch can I eat?

    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.

  6. Will I ever be able to tolerate more starch in my diet?

    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.

    Patients Diagnosed and Treated for CSID1
    Age Group (years) Average Starch Intake (grams/day) Average Range of Starch Intake (grams /day)
    1 to 3 16 0 – 37
    4 to 8 75 25 – 125
    9 to 18 80 21 – 140
    >19 56 25 – 86

    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.

  7. Which types of starch are best to eat?

    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.

  8. What is maltose and isomaltose?

    Starch is broken down (digested) into 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. Reducing starch from the diet reduces the amount of maltose and isomaltose.

    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.

  9. What about gluten-free products?

    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.

If you have further questions about your diet and would like to speak with a registered dietitian, please call 1-800-705-1962.

  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.
  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.

Peer Coach Frequently Asked Questions

  1. How do I travel with Sucraid® (sacrosidase) Oral Solution on an airplane?

    A Letter of Medical Necessity for Travel can be very helpful when traveling with Sucraid®. The letter can be found on SucraidASSIST.com in the “Resources” section. If you have other questions regarding travel, you can discuss with your doctor or contact the QOL Medical Peer Coach at 1-800-705-1962.

  2. Where can I get more info on CSID?

    Information on CSID can be found by talking to your doctor or on the following websites: Sucraid.com and SucraidASSIST.com. If you have further questions, you may contact QOL Medical at 1-800-705-1962.

  3. How do I dose and administer Sucraid®?

    An instruction sheet (“How to Take Sucraid®”) can be found on SucraidASSIST.com in the “Resources” section. In addition, there is a video on SucraidASSIST.com that explains how to dose and administer Sucraid®. If you have further questions, you can discuss with your doctor or contact QOL Medical at 1-800-705-1962 or US Bioservices at 1-833-800-0122.

  4. How do I handle Sucraid® in a school setting?

    There is a video on SucraidASSIST.com with tips on how to handle Sucraid® in a school setting. If you need further assistance, you can discuss with your doctor or contact the QOL Medical Peer Coach at 1-800-705-1962.

  5. I have questions about the genetics of CSID.

    On the Sucraid.com website (under “About CSID”), there is a webpage that provides information about the genetics of CSID. If you need further assistance, you can discuss with your doctor or contact the QOL Medical Peer Coach at 1-800-705-1962.

Metabolic Solutions 13C-Sucrose Breath Test Frequently Asked Questions

  1. What will the breath test determine?

    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.

  2. Do I have to fill out my name, the name of the clinic, and the date on the tubes?

    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.

  3. My kit says it is time-sensitive and should be completed within 10 days. It has been longer than 10 days. Can I still complete the test?

    Yes, you can still complete the test if it has been longer than 10 days. There is an expiration date on the silver sucrose packet inside the test kit. If that date has not expired, it’s okay to use the breath test kit.

  4. When I am completing the Breath Test Form, what should I enter as my doctor’s NPI number?

    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.

  5. What is the cost for this test?

    The 13C-Sucrose Breath Test is free. This is a complimentary test ordered by your healthcare provider.

  6. What is in the silver packet?

    The silver packet in the breath test kit contains 20 grams of sucrose, which is table sugar.

  7. I need help understanding how to perform this test.

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

  8. How can I get the results of my completed breath test?

    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.

  9. How long does it take for my completed breath test kit to be received by the lab?

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

  10. Can my shipment be tracked to make sure the lab received it?

    Unfortunately, tracking information is not available. Because the kit was pre-paid 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.

Frequently Asked Questions (FAQs) about CSID and Diet

  1. What is Congenital Sucrase-Isomaltase Deficiency (CSID)?

    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.

  2. If I have Congenital Sucrase-Isomaltase Deficiency (CSID), does that mean I can’t eat any sugars or carbohydrates?

    Not necessarily. However, it’s important to understand which types of carbohydrates may cause your gastrointestinal problems if you have CSID. Carbohydrates include different types of sugars, fiber, and starch. 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® (sacrosidase) Oral Solution, and diet modifications, talk to your doctor or visit SucraidASSIST.com.

  3. I’ve just been diagnosed with CSID and need to know what I can eat?

    It is best to ask your doctor or registered dietitian to help you plan a diet that is right for you. Visit SucraidASSIST.com to find lists of foods that are low in sucrose, a database where you can search for the sucrose and starch content of foods, and other resources to help you get started with Sucraid®, the enzyme replacement for sucrase, and diet therapy.

    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. If you need further help with your diet, talk to your doctor, a registered dietitian, or call 1-800-705-1962.

  4. I just received my Sucraid®. How do I get started with Sucraid® and diet therapy?

    Read the section on “Getting Started” in the “Sucraid® and Diet Therapy” guide for infants, children, and adults. This diet resource can be found on SucraidASSIST.com. 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®. If you need further help with diet modifications, talk to your doctor or a registered dietitian, visit SucraidASSIST.com or call 1-800-705-1962.

  5. Where can I find help with meal planning? I have other health conditions that require diet restrictions and I’m not sure where to start.

    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 on SucraidASSIST.com. If you need further help, talk to your doctor or you can call 1-800-705-1962 and ask to speak with a registered dietitian.