Story about Congenital Sucrase Isomaltase Deficiency .

My CSID journey

Nov 15, 2021

By: Tracey

Year Condition Began: 1974


I am currently 50 years old and diagnosed with CSID at the age of 3. I went through many yesrs of my mum trying to figure out what to feed me until I met with an awesome dietician at the age of 12. I now liveva relatively normal life and can eat most foods, some with more moderation than others.

The dietician eliminated all sucrose, starch and natural sugar from my diet for 2 weeks (HINT - glucose powder bought from a health food store can be substitute for sugar as it does not need to be broken down by the body).

After that I was given fact sheets (similar info is now available on the internet) detailing the amount of sucrose and starch in fruits, vegetables, grains, etc.

I then in 2 week intervals gradually intoduced small amounts until I found my tolerance levels.

Too much starch causes bloating/wind pains that will last up to 48 hours. Too much sucrose causes really bad stomach pains/cramps. Too much sugar causes diarrhea.

Diet is just s balancing act that becomes easier with practice.

I am happy to help out any people or parents navigste CSID.

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