There are 132 people in the Congenital Sucrase Isomaltase Deficiency map
140 people with Congenital Sucrase Isomaltase Deficiency have joined the DiseaseMaps community map. They have shared 211 first-person answers and 11 stories about living with the condition.
Diagnosed at age 6 in Melbourne.
No known family history of disease.
No sucraid available in Australia so diet only to treat condition. Normal lactase enzyme but sucrase and maltase levels extremely low or non existent.
My son has CSID. Diagnosed at 5 years of age. It's been a long journey to get to this point.
As there is no access to sucraid in Australia, we are purely trying to manage by diet alone.
As a mother, I will always be a voice for my young...
my name is Millie and I was diagnosed with SI at age 18 months as I didn't fall under the top four genetic mutations of CSID and it was too expensive to continue testing, but I follow the exact same diet and can't have sucrose or much starch. I have ...
Hello,
Just curious, do any of you struggle with UHT milk? I am fine with all other dairy but for some reason UHT is a no go for me.
For the life of me I can't figure out why, there are no added sugars. I'm wondering if this is a 'CSID thin...
5 people with Congenital Sucrase Isomaltase Deficiency have taken the SF36 survey. Mean of Congenital Sucrase Isomaltase Deficiency is 1306 points (36 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
