Frequently Asked Questions
Sugar Intolerance. Sucrose Intolerance. Congenital Sucrase-Isomaltase Deficiency (CSID).
Whatever you call it or however you hear it referred to, the inability to properly digest sugar is a rare condition that is poorly understood and often misdiagnosed because too few doctors see enough cases to recognize it.
That’s why it’s important for parents to learn all they can about CSID. It may not be among the first conditions your pediatrician considers when diagnosing your child, even if your child is showing the signs of it.
To help you talk about CSID with your doctor, take along our downloadable guide, which contains info for both of you to quickly, easily, and painlessly test your child to get an accurate diagnosis and the right treatment.
I’m detective mom. What are the CSID clues?
The quickest way to conduct your investigation is by taking this quiz. In less than a minute you’ll have gathered enough evidence to take to the judge, er, pediatrician.
Take along additional information to help you have a good discussion with your doctor, so the necessary steps can be taken to identify the real culprit causing your child’s stomach problems.
What is Congenital Sucrase-Isomaltase Deficiency (CSID)?
CSID, also referred to as Sucrose Intolerance or informally as Sugar Intolerance, is one of a handful of food intolerances. The ones most people have heard of are lactose intolerance and gluten intolerance.
A food intolerance is not a food allergy. A food intolerance occurs when a person lacks the enzymes, or chemicals that are able to break down foods and digest them.
With CSID, a child is missing sucrase and isomaltase, the enzymes needed to digest certain sugars (sucrose and maltose) that are found in foods, such as some fruits and vegetables, and starch, which is a lot of sugars linked together, found in foods such as grains in cereal and bread.
How could my child have gotten CSID? What causes it?
CSID is a genetic condition. That means a child who has it inherited genes that are damaged. Parents can pass along these bad genes, even if they themselves don’t have the condition; it’s a matter of both parents carrying the same bad gene, which is rare.
Because CSID is inherited, your child can show symptoms as early as when you switch your baby from breast milk to formula, which contains sugars. But because CSID is rare, many doctors don’t see enough cases to recognize it and, therefore, don’t test for it.
This inability to recognize CSID has long resulted in kids not getting diagnosed and being treated inaccurately for months or even years, which is dangerous to a child’s healthy development.
The best type of doctor to see is a pediatric gastroenterologist, commonly called a GI, which is a doctor who specializes in stomach problems for children and is more likely to recognize and test for Sugar Intolerance.
Download and take this guide with you to your next appointment to help you talk about Sugar Intolerance and testing with your doctor.
What are the symptoms of Sucrose Intolerance?
Sucrose Intolerance results in very uncomfortable gastrointestinal (GI), or stomach, symptoms, including a lot of gas and belly bloating, constant watery diarrhea, painful cramps, vomiting, and overall fussiness or irritability.
Symptoms are more severe in infants and children than in adults, in part because their digestive tracts are shorter; so food moves more quickly, allowing less time for it to be digested and absorbed.
Because of ongoing diarrhea and not being able to absorb all the nutrients they need, children with CSID may experience dehydration or poor weight gain, be undernourished (also called malnutrition), and exhibit what doctors call “failure to thrive,” all of which can lead to serious problems with your child’s development.
Couldn’t my child just be allergic to sugar?
Yes, but a sugar allergy is extremely rare, even rarer than a Sugar Intolerance; and there are key differences between a food allergy and a food intolerance.
With a sugar or any other food allergy, it’s the immune system that goes into overdrive, attacking an unwelcome food as though it were fighting an infection. With a sugar or other food intolerance, it’s the stomach that rebels because it can’t properly digest, or break down, the sugary food.
The allergy-angered immune system commonly causes hives, stomach cramps, or vomiting. At the extreme, an allergic reaction, called anaphylaxis, can result in swelling of the lips, tongue, or throat and can be life-threatening.
Symptoms of Sugar Intolerance include frequent loose stools or watery diarrhea, bad gas and bloating, stomach pain, and vomiting. For babies and toddlers, specifically, fussiness and irritability are common, as is severe diaper rash because of the constant, acidic diarrhea filling their diapers.
While both a sugar allergy and Sugar Intolerance can produce stomach pain and vomiting, their other symptoms set them apart. There are tests available for both conditions to help your doctor make an accurate diagnosis.
What if it’s just colic?
Unfortunately, colic has become a catchall term, a word that covers a wide variety of symptoms, beyond the signs of colic itself. This is the main reason parents often think it’s colic if their baby is irritable, just won’t settle down, and can’t seem to be consoled.
Your infant not gaining enough weight and having constant diarrhea and vomiting are “red flags” and a clear indication that your baby has something more than colic.
Testing for Sugar Intolerance, which is what these symptoms point to, is important to treat and manage the condition so that your child is getting the vitamins, minerals, and calories needed to develop properly.
All babies have diarrhea, so what if mine just has toddler’s diarrhea?
Toddler’s diarrhea and Sugar Intolerance have some overlapping symptoms.
Symptoms of toddler’s diarrhea include several loose, watery stools each day on most days, but no other signs of illness. A child with this disorder is active, gaining weight, and doesn’t seem to be in pain or distress. Eventually, toddler’s diarrhea goes away.
Sucrose Intolerance, on the other hand, has several more symptoms, such as stomach pain, lots of gas and bloating, and vomiting. If these symptoms go on long enough, your child won’t gain enough weight or be getting the nutrition needed to develop properly.
Plus, it doesn’t go away because it is an inherited condition, so your child will have CSID for life. But it can be treated and managed so that your child can lead a normal, healthy, and happy life.
Do I need to take my child to a doctor or will these symptoms ease up?
It’s time to see your doctor if your child has diarrhea with any of the following symptoms: a temperature of 102º or higher, belly pain, or poop that has blood or pus in it or is black, white or red, which are not normal colors.
If your baby or older child has ongoing diarrhea and vomiting – alone or together – it’s also time to see the pediatrician. Having more fluids going out than coming in can quickly lead to dehydration and that can result in serious complications. This is true for adults, too.
Sugar Intolerance symptoms overlap with other illnesses, so you should ask your pediatrician about the possibility of your child’s having CSID since there are simple and painless tests now available to diagnose the condition.
CSID is a lifelong disorder, so the symptoms won’t go away. But getting the right diagnosis and treatment, along with learning how to manage it through diet (knowing what foods may be safe to eat), can give you and your child relief.
Seeing a specialist in stomach disorders in children, called a pediatric gastroenterologist (GI), is a good idea. This doctor is most likely to recognize the symptoms of CSID because it’s a rare condition, and general pediatricians may not see enough cases to recognize it.
How can I know for sure that my kid has CSID? Is there a test for it?
Yes, Sugar Intolerance can be diagnosed. Several tests are now available for diagnosing CSID.
One involves an invasive procedure, called an endoscopy, in which a tube is put down your child’s throat to see what’s going on inside the stomach and intestine; your child needs to be asleep for this test. Breath tests, which are newer, are not invasive.
Your doctor should discuss testing options with you so that you understand why one might be recommended over another.
Can CSID be cured?
No, CSID is something that your child will always live with because it is inherited. You and your partner have passed down damaged genes. Your child can have CSID even if neither parent has symptoms of the deficiency.
The damaged genes that are specific to CSID result in your child’s missing certain enzymes, or chemicals that are able to digest foods that have sugars in them.
But while CSID can’t be cured, it can be treated and managed so that your child can live a healthy and happy life.
Is there a treatment for Sucrose Intolerance?
Yes, there is pharmaceutical treatment for Sucrose Intolerance. Be sure to ask your doctor about this option. (Take this guide along with you to help you and your doctor discuss this therapy.)
Because Sucrose Intolerance symptoms are triggered by foods that have sugars in them, the first step in managing this condition is through diet. Working with a registered dietitian (RD) can be extremely helpful. RDs are trained in helping people understand how to make smart food choices to manage health conditions, such as CSID, in which diet plays a big part.
Ask your doctor to refer you to an RD who specializes in working with children. Your health insurer should also be able to direct you to someone in your network.
Will my insurance cover the cost of testing and treatment?
You need to contact your insurance company about what your plan covers, for both testing and treatment.
New breath tests are now available, at no cost to you, so you should ask your doctor about those.
Some states have programs that offer healthcare assistance for children with special needs.
Also, some pharmaceutical companies have assistance programs to help people who can’t afford their medications. After your doctor tells you the name of the medication that they would like to prescribe for your child, you can look for this information on that drug company’s website.
It seems like there’s sugar in everything, even what I thought were healthy fruits and veggies! So what food is healthy but not harmful for my sugar-intolerant-child?
First off, see a registered dietitian (RD), who is trained in helping people understand how to make smart food choices to manage health conditions, such as CSID. Ask your doctor to refer you to an RD who specializes in working with babies and children since their nutrition needs are very different from those of adults.
Sugar intolerance is due to the lack of working enzymes, which makes digesting two types of sugars – sucrose and maltose – difficult. These sugars are found in processed and natural foods.
You’ll find helpful information, tips, checklists, and more on this website. Get the facts on food groups here. Learn how to read a food label here. Download a handy take-along grocery store checklist here.
What can I pack for lunch for my kid in grade school? I don’t want them eating the cafeteria food or snacks.
You’ll find a lot of ideas for CSID-safe school lunches here. While they may require a bit more effort than the conventional sugar-rich peanut butter and jelly sandwich, they are definitely doable and delicious.
You can find great ideas here for snacks to have on hand at home and for grabbing on-the-go. These foods aren’t just for hunger pangs. They provide another opportunity to deliver the vitamins and minerals your child needs to grow well.
How can I can help my young child understand why he has to pay attention to what he eats, even if other adults in his life tell him that foods that really aren’t okay for CSID are okay?
There are several strategies for parents of young children with CSID. For example, you can do things to help them feel empowered so that they don’t feel like they are ruled by their condition. Let them participate in choosing the foods they will eat. And have them help you prepare meals, too, when they are old enough.
It’s also important to help them learn how to tell others why they can’t eat foods that might be pushed on them that are not on the CSID good-to-eat list, whether they are toddlers or school-age.
Younger children are trusting of adults in their life, such as grandparents, daycare workers, and school staff, as well as influenced by friends.
No doubt, you’ll talk to the people who participate in your child’s care, but giving youngsters the words to explain easily why they can and can’t eat something makes both of you feel better.
How can I can help my teenager stick with their CSID diet so they don’t feel weird or embarrassed when they’re with their friends?
Tweens and teens with CSID may go from being compliant about the rules of eating to rebellious because this is a time when being different is difficult.
Between not always eating the same foods as their friends to having any embarrassing symptoms arise – especially when they go off-diet – makes this a tricky time for you both.
But there are ways to support them without smothering them, so that they do stay on track with their CSID-safe eating.
It’s also important to help them deal with the emotional challenges of living with an invisible illness. People can’t literally see CSID because it affects the inside of the body, so some might make judgements about your kid. They might think, for example, that you have a picky eater.
Don’t underestimate the impact on the mental health and well-being of teenagers who have to navigate a medical disorder on top of all the other peer pressure they experience at their age.