Doctors have long understood that sucrose intolerance, also known as congenital sucrase-isomaltase deficiency (CSID), is a genetic condition in which affected individuals have extreme GI discomfort when they eat foods with sucrose in them (such as candy, fruit, many processed foods and even some vegetables). The conventional thinking was that sucrose intolerance was diagnosed in childhood and that was it.
Recently, however, it has become clear that there are genetic variants that cause a less severe form of the condition, which affects more people than doctors had imagined. “Recent studies have suggested that up to 35% of patients diagnosed with irritable bowel syndrome—especially the diarrhea-predominant type—may actually have these variants,” says John Damianos, MDInternal medicine doctor with a focus on gastroenterology Connecticut’s Yale New Haven Hospital. This means that many more people are suffering from extreme GI discomfort (abdominal cramps, bloating, gas and diarrhea) in silence without understanding the true nature of their problem.
Example: For more than a decade, Lisamarie Monaco, 50, suffered from bloating, pain, constipation and diarrhea. After being diagnosed with irritable bowel syndrome (IBS), she changed her diet and tried different medications. But to Lisamarie’s dismay, her GI symptoms leveled off worse. Then a few years ago, a new doctor made a surprising discovery: Lisamarie didn’t have IBS after all, she has sucrose intolerance.
Here, Lisamarie shares her healing journey, and Dr. Damianos provides a fuller picture of why sucrose intolerance is on the rise and a home test you can take to see if your situation warrants a trip to the doctor.
How GI upset took over Lisamarie’s life
“Another day of racing on the toilet,” Lisamarie Monaco sighed in frustration as she struggled with another bout of uncontrollable diarrhea. From 2002, chronic digestive problems often meant that Lisamarie could not leave her house – or her bathroom.
What had started as stomach discomfort and bloating had progressed, often leaving her doubled over in pain, disrupting almost every part of her life. Lisamarie assumed her symptoms were caused by irritable bowel syndromeor IBS, which her doctor agreed was likely the cause and diagnosed her with the digestive syndrome that typically causes bloating, pain, constipation and/or diarrhea.
But despite making several dietary changes and taking over-the-counter medications, Lisamarie’s symptoms never improved—in fact, things only got worse.
As Lisamarie bounced from specialist to specialist trying to decide on a course of treatment, she was unable to find one that relieved her symptoms, which became so severe that she had to leave her job of 18 years and she lost over 40 pound.
Lisamarie’s health had become so bad that an acquaintance thought that Lisamarie was terminally ill. “This has to be more than IBS,” Lisamarie told herself. “And I have to find out what it is!”
The real cause of Lisamarie’s stomach pain
Finally, after 15 years of suffering, Lisamarie found a doctor willing to take the time to get to the bottom of her symptoms.
One of the tests the doctor performed was a hydrogen breath test — a simple and non-invasive way to diagnose common gastrointestinal conditions through an evaluation of the gas you exhale. Its main purpose was to determine Lisamarie’s levels of the sugar compound, sucrose. Commonly known as table sugar, granulated sugar, or just plain “sugar,” sucrose is a disaccharide made from equal parts glucose and fructose.
To her surprise, that test led to a surprising new diagnosis: Lisamarie had sucrose intolerance. “I have what?she asked in shock.
What is sucrose intolerance?
Lisamarie’s doctor explained that a sucrose intolerance develops when there is a deficiency of the enzyme sucrase-isomaltasewhich breaks down the bond between the glucose and fructose molecules (which make up sucrose) so that they are absorbed in the small intestine.
Without that enzyme, sucrose is not absorbed in the small intestine and moves on to the large intestine, where it causes cramping, bloating, gas and diarrhea.
Lisamarie’s doctor further explained that sucrose intolerance, which often gets worse as our digestion slows down with ageis more common than typically diagnosed, as the symptoms are difficult to distinguish from irritable bowel syndrome.
The drug-free way to cure sucrose intolerance
Excited to finally have an answer, Lisamarie asked what she could do to resolve her symptoms and finally get back to living a normal life. Her doctor explained that the key to eliminating symptoms of sucrose intolerance was to cut out or significantly reduce the intake of foods with added sugar or those naturally high in sucrose such as bananas, apples and raisins.
Lisamarie also had to avoid artificial sweeteners sucralose — marketed as Splenda in the US — the artificial form of sucrose. (Click through to see if you’re using sucralose sweetener in your coffee may be the cause of all your intestinal problems)
Although these steps are not easy for many people to perform, Lisamarie was desperate for relief from her severe GI symptoms.
Feeling encouraged, Lisamarie began cutting out soda and other sneaky sugary drinks (like juice), reading food labels to make sure they were very low in sugar, and increasing whole grains and fiber to help absorb sugar into her body.
Then she started eating low-sucrose foods like avocados twice a week and added blueberries to probiotic-rich Greek yogurt to help maintain a healthy gut. She also made sure to stay hydrated by drinking lots of water throughout the day.
(Click through to find out how this sucrose substitute turns down blood sugar to make weight loss effortless + dessert recipes with low sugar content)
Eliminating sucrose worked for Lisamarie
After just a few days, Lisamarie began to feel less discomfort and was not bloated. And within a few weeks, her symptoms were completely gone.
“I was able to clean out my medicine cabinet—for good!” smiles Lisamarie, 50, who today follows a low-sugar diet and remains symptom-free. “I’m excited to get my life back!”
How SIBO can turn into sucrose intolerance
Any gastrointestinal disease that causes inflammation of the small intestine (eg Crohn’s disease or Celiac disease or Small intestinal bacterial overgrowthalso known as SIBO — take this quiz to find out if you have SIBO) can trigger sucrose intolerance, explains Dr. Damiano’s. The reason? “The sucrase isomatase enzyme is found on the ends of cells in the small intestine.” He explains. “Any inflammation can cause a sloughing-off of this enzyme, preventing sugar from being digested.”
Sucrose intolerance is often misdiagnosed because its symptoms (bloating, abdominal pain, flatulence and diarrhea) are nonspecific. “Similar symptoms are seen in a huge number of other gastrointestinal disorders.”
Therefore, Dr. recommends Damiano’s 4-4-4 test for anyone who suspects they may be intolerant to sucrose. “While the test is sensitive, it is not specific, so a positive test does not necessarily mean that a person has sucrose intolerance.” A positive 4-4-4 test will prompt your doctor to order other tests to confirm the diagnosis.
Follow these steps to take the 4-4-4 test for sucrose intolerance:
Stir 4 tbsp. sugar in 4 oz. of water.
Drink the mixture on an empty stomach.
Keep an eye on yourself for 4 hours. If you experience bloating, loose stools or abdominal discomfort, further tests from your doctor will be necessary to confirm a sucrose intolerance.
Note: Dr. Damianos stresses that this test is not suitable for babies, young children or people with diabetes.
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This content is not a substitute for professional medical advice or diagnosis. Always consult your doctor before following a treatment plan.
A version of this article originally appeared in our print magazine, Woman’s world.