Sucrose Intolerance – How It Shifts as a Child Grows
Enrique Hernandez-Sanchez, M.D. Pediatric Gastroenterologist
Having a child diagnosed with Sucrose Intolerance is, just by itself, a tremendous achievement. While the diagnosis is not something a parent necessarily wants to hear, it is a step in the right direction toward successfully dealing with their condition.
Obtaining a correct diagnosis is a tremendous achievement because most patients who are diagnosed with Congenital Sucrase-Isomaltase Deficiency (CSID) have gone years with chronic, intermittent bloating, unexplained diarrhea, and abdominal pain. Many have received an incorrect diagnosis of irritable bowel syndrome-diarrhea (IBS-D) or other gastrointestinal problems.
They are correctly diagnosed only after their third or fourth physician decides to conduct a gastrointestinal endoscopy procedure to obtain tissue samples from the small intestine to determine the level of sucrase and isomaltase enzyme activity or orders other tests that can aid in a diagnosis, one of which is a sucrose breath test.
However, once a toddler is diagnosed with CSID, he is usually placed on a reduced sucrose diet and/or medication, both of which help lessen his symptoms.
As the months pass, the relief of getting a correct diagnosis begins to wear off, and parent start to deal with the realities of having a child with CSID. They hear complaints about the sugar and starch restrictions as well as the fact their kid needs to take this medication every time they have a meal, no matter where they go.
At this point, parents start to wonder if they and their child will have to deal with these problems for the rest of their lives. Some parents report that, as they age, children appear less sensitive to sucrose; and as the years go by, they are able to better tolerate certain fruits or sugars that had made them sick in the past. This tolerance does not mean children are outgrowing CSID. Unfortunately, this genetic condition does not go away, but a mild increase in tolerance is reported by some families.
In my experience, symptoms often worsen during adolescence where peer pressure and the desire to fit in makes teens adventure outside the diet, and their symptoms return. Sometimes, they go on play dates – or “hangouts” as my teen son frequently corrects me. They refuse to take their medication with them, arguing they will watch what they eat. Being teenagers, they rarely follow through with that plan, and their symptoms recur.
In summary, most children will have a minor increase in sucrose tolerance but not enough to come off medication or diet. I hope that this brief overview gives young parents a perspective of what it is like to deal with CSID as the years go by.
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