13 Questions to Ask Your Doctor About Sugar Intolerance

13 Questions to Ask Your Doctor About Sugar Intolerance

Here’s what to ask – and tell – your doctor to understand how to test your child for, treat, and live well with Sucrose Intolerance.

13 Questions to Ask Your Doctor about Sugar Intolerance

If your infant, toddler, tween, or teenager has been suffering with symptoms such as frequent watery diarrhea, gas, bloating, stomach pain, and vomiting, you’re likely going to do whatever it takes to help them get relief.

If you’re heading to the doctor to get a diagnosis, it’s wise to go equipped with the right questions to ask, as well as any notes you might be keeping to track what your child eats and when these symptoms are experienced; for example, right after eating.

It’s important to ask about, and consider, more than the obvious cause for your child’s issues. This is especially true if your kid may have a rare disease, which might be overlooked if you don’t bring it up.

Sucrose Intolerance, sometimes informally referred to as Sugar Intolerance, is just that, a rare medical condition caused by Congenital Sucrase-Isomaltase Deficiency (CSID).

Because it is rare, many doctors don’t see enough cases to recognize it. Therefore, they may not consider it and miss the real reason – and the best treatment – for your child’s tummy troubles.

Already diagnosed with CSID? Follow-up visits are more effective and efficient if you come prepared with a list of questions and notes to best continue to manage and monitor your child’s condition.

Your CSID Snapshot

CSID is an inherited condition that causes stomach problems when certain foods are eaten because the body can’t digest, or break down, these foods.

Children with Sugar Intolerance caused by CSID are born without the ability to produce adequately functioning forms of the enzymes sucrase and isomaltase, chemicals needed to digest different sugars and starches, which are chains of sugar chemicals linked together.

This enzyme deficiency causes foods containing these sugars to be improperly digested, resulting in stomachaches and cramping, bloating, gas, and frequent watery diarrhea.

If left untreated, these digestive problems can lead to a failure to gain weight and grow at the expected rate, a condition called “failure to thrive,” and even malnutrition, meaning your child isn’t able to digest and absorb all the nutrients and calories they need for healthy development.

Which Doctor Is Best?

As with any rare disease, it’s best to see a specialist because a specialist is very focused on a particular area of the body and is more familiar with conditions that are less well known to general practitioners, such as a family doctor or pediatrician.

Seek out a pediatric gastroenterologist, typically called a GI doctor, who is a specialist in the stomach area.

You’ll also benefit greatly from asking questions of a registered dietitian (RD) or a certified specialist in pediatric nutrition. These specialists can map out a food management plan to help you identify the good, the bad, and the really bad foods, so you can shop for and prepare meals and snacks anxiety-free.

Ask for a written report or care plan from all members of your child’s healthcare team, so you don’t have to worry about forgetting any of their instructions.

Quick Tip: Keep a detailed food journal to track when your child’s symptoms occur and which foods appear to trigger these symptoms and take it to every appointment.

The Top 13 Questions to Ask Your Doctor

  1. Could my child’s symptoms be caused by Congenital Sucrase-Isomaltase Deficiency (CSID)?
  2. How is CSID diagnosed?
  3. Are symptoms specific to my baby? Toddler? Tween? Teen?
  4. How many children with CSID have you treated?
  5. What are my child’s treatment options?
  6. Will my child outgrow this condition?
  7. Should my child wear a medical alert bracelet?
  8. Must my child stop eating all sugars and starches?
  9. How can I be certain my child is getting proper nutrition in her diet?
  10. Is there a medical professional who can help me understand how to manage my child’s diet? Is that what an RD is?
  11. How do I best explain my child’s condition and necessary diet limitations to others?
  12. Does my child need to come in for periodic follow-up visits? If so, how often?
  13. Do you have a brochure or other information that I can have as a resource?

Sucrose Intolerance may be more common than you think.