Your baby’s pediatrician just told you that your child’s colicky gas, bloating, and ongoing watery diarrhea are because of Sucrose Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID).
Informally called “Sugar Intolerance,” Sucrose Intolerance is a chronic disease, which means that it can’t be cured. And it’s rare, which means you probably haven’t heard of it before.
This diagnosis can feel overwhelming and scary at first. However, when properly treated and managed, CSID can be little more than an inconvenience in your child’s long and healthy life.
Many people with CSID struggle for a long time before they are accurately diagnosed because rare diseases are often overlooked until enough doctors learn how to recognize it.
Now that you know your child has Sugar Intolerance, you can take the necessary steps to help her eat the right foods so she can grow to be healthy and strong.
Medication for Sucrose Intolerance
There is pharmaceutical treatment for Sucrose Intolerance. If your doctor hasn’t yet mentioned it to you, be sure to ask about this option for your child’s care. (You can take this guide along with you to help you and your doctor consider this therapy.)
Managing a Sugar Intolerance Diet
Because Sugar Intolerance symptoms are triggered by foods that have sugars in them that the stomach and intestines can’t digest, the first step in managing this condition is through diet.
Your child’s doctor should suggest that you work with a registered dietitian (RD), who specializes in helping people understand how to make smart food choices and plan meals to manage conditions, such as CSID or diabetes, in which diet plays a big part.
Ask your pediatrician to recommend an RD who specifically works with toddlers and children. You can also look for an RD in your area at eatright.org, the website of the Academy of Nutrition and Dietetics.
Your healthcare insurance may cover the cost of consulting with an RD and recommend one in your network. There may also be a program in your state that offers healthcare assistance for children with special needs.
Your Child’s Nutritional Needs
To support healthy development, infants and growing children have greater nutritional needs than adults.
Because CSID is such a rare condition, most RDs don’t have specific experience helping children with it. However, they are certainly able to advise you on your baby’s and growing child’s nutritional needs and help you find the diet that’s right for them.
The RD may recommend starting out by putting your child on a very limited diet, eliminating all foods containing sucrose (table sugar) or starch (which is a lot of sugars linked together). Then they work with you to gradually add certain foods back into the diet, one at a time, to see which ones can be tolerated.
Using this approach, you keep a record of the foods your baby or older child is eating every meal and which foods seem to trigger symptoms of bloating and gas (colic), watery diarrhea, and vomiting.
The RD helps you find foods that can provide your baby with the calories and nutrients needed; and advises on how to avoid foods that may seem perfectly healthy, such as bananas, but which contain natural sugars. The RD also teaches you how to read a food label to spot “bad” sugars in food products.
It Gets Easier
Believe it or not, life with a child who has CSID gets easier.
For one thing, the digestive tract will become longer as the child grows, giving food more time to get digested, or broken down, and absorbed.
For another, your child will learn over time what should and should not be eaten. When your child’s old enough, shop for groceries and prepare meals together. These activities give your child a voice in choosing the proper foods and gain a sense of control over the disease.