Before you can get the right treatment for real relief, you need to get a CSID diagnosis. Here’s how to recognize the signs and know the tests to ask your doctor about.
Let’s begin at the beginning to make sure you have a clear understanding of what Sugar Intolerance caused by Congenital Sucrase-Isomaltase Deficiency (CSID) is and what you can do to feel better. Fast!
First, a word on sugar. There are actually several different types of sugar.
No doubt when you are in the grocery store, you see foods labeled “lactose-free” this, “gluten-free” that. These labels are important because some people can’t tolerate foods that contain the types of sugar specific to these conditions.
Sugar Intolerance, as “sugar” in the name implies, also occurs because your body can’t digest, or break down, foods that have table sugar, or sucrose, in them. These can be foods that have sugar added to them or foods that have sugar in them naturally.
Sugar Intolerance, Sucrose Intolerance, and CSID
Three names are alternately used for this condition:
- Congenital Sucrase-Isomaltase Deficiency (CSID)
- Sugar Intolerance caused by CSID
- Sucrose Intolerance caused by CSID
That’s because the real bad guy behind Sugar Intolerance is the type of sugar called “sucrose,” which is table sugar.
CSID is an inherited condition, meaning you were born without working versions of specific sugar enzymes (chemicals) called “sucrase: and “isomaltase,” which are needed to help digest sugars and starches. Starches are made up of large chains of sugars.
Sugar Intolerance Symptoms and the Challenge of Getting an Accurate Diagnosis
Getting the correct diagnosis for this condition can be challenging, which makes it even more important for you to advocate for yourself or your child if you suspect they have CSID, and discuss with your doctor the possibility of Sugar Intolerance being the cause of your ongoing stomach distress.
Diagnosis Challenge 1:
This disease is rare, which means that not many doctors see enough cases to recognize it. Therefore, they may not think to test for it and instead treat for other conditions, which won’t take care of all of your Sucrose Intolerance symptoms.
Diagnosis Challenge 2:
Sugar Intolerance symptoms in adults are extremely similar to those of other food intolerances (like lactose and gluten), irritable bowel syndrome (IBS), and some viruses. These overlapping symptoms include chronic, watery diarrhea; gassiness; stomach cramps; bloating; and vomiting.
Without a CSID diagnosis, you can’t be treated properly. And that means if you have undiagnosed CSID, you may continue to experience symptoms as your doctor follows treatment plans for other, better-known conditions.
To improve your odds of getting a correct diagnosis – and getting it faster – go to a specialist in stomach and digestion disorders, who is more likely to recognize the signs of Sugar Intolerance because they likely see more patients with it. This specialist is called a gastroenterologist. If your child is displaying signs of this condition, go to a pediatric gastroenterologist.
Download and print out our “Ask Your Doctor” guide
and take it with you to your doctor visit. It has questions and information to help your conversation and includes a Sugar Intolerance test form that your doctor can fill out so that you can get the newest test designed to help diagnose this disease.
You can also take our Sugar Intolerance Quiz to find out if you should ask your doctor about CSID.
The Sugar Intolerance Tests You Can Take to Aid in the Diagnosis of CSID
Several tests have been used to aid in the diagnosis of Sugar Intolerance. Here’s a brief overview of the kinds of tests that can help detect the inability to break down sugar when it’s consumed.
Assay for Sucrase.
Your doctor may decide to take a closer look inside your intestine to see first-hand what’s going on. You’re sedated for this test, so that your doctor can insert a long tube, called an endoscope, to look inside your intestine. A few, very small samples of the tissue lining the walls of your intestine are taken. These samples are sent to a lab that can measure the amount of sucrase activity there is in this tissue. If there isn’t any working sucrase in your tissue samples, you may have Sugar Intolerance.
Two simple tests can be run in your doctor’s office or at home. Both of these tests are based on the principle that when you aren’t digesting certain sugars, that inability can be detected by the gases you exhale in your breath.
Breath Test 1: Sucrose Hydrogen/Methane Breath Test.
This test measures the amount of hydrogen gas in your exhaled breath. The test starts with your drinking a watery solution with sugar in it. Several sugars can be tested. If your doctor suspects that you may have CSID, the water contains table sugar. Then every 30 minutes, you blow into a sealed test tube. The entire test usually lasts about 3 hours.
Breath Test 2: 13C-Sucrose Breath Test.
This test starts with your drinking a solution of water and sucrose (table sugar) that is labelled by naturally occurring 13
C. If you aren’t able to digest the sucrose, it will be broken down and one of the byproducts will be carbon dioxide, which has the 13
C label (13
). There won’t be much, if any, 13
in your exhaled breath if you have CSID. Just like the other breath test, you blow into a sealed test tube every 30 minutes. This breath test takes about 1½ hours.
Sugar Challenge Test.
The 4-4-4 Sugar Challenge
is a test to see if you have symptoms after drinking a glass of water mixed with table sugar. This test should only be done after a discussion with your doctor because it’s not appropriate for infants, young children, individuals with diabetes, or the elderly. To take this test, an adult stirs 4 tablespoons of table sugar into 4 ounces of water and drinks the solution on an empty stomach. If Sugar Intolerance symptoms develop in the next 4 to 8 hours, it indicates that Sugar Intolerance caused by CSID is something you should discuss with your doctor. Also, you may develop severe symptoms as a result of taking the test.