Hi everyone, I am 40 year old female and was diagnosed with CSID when I was 3. I live a relatively normal life now since I found a really fantastic dietitian when I was a teenager. I have since been diagnosed with lactose intolerance with is a side effect of CSID but does not necessarily present itself until you are older. I was diagnosed with this at about 25 after a couple of years of suffering.
Anyway, I have a lot of information about what foods can and can't be eaten and some great recipes also. My mother found that for a lot of recipes that have sugar in them (and no other intolerable sugars) this can be substituted with powdered glucose.
From what I understand, nearly every person with CSID everyone has different tolerance levels to the different sugars.
Now let me explain the different symptoms of each different one should you consume too much:-
* Sugar - Diarrhea
* Starch (Maltase) - Wind, Bloating, swelling causing pain 48hrs
* Sucrose - Severe stomach pain/cramps
This can help you identify which sugar that has been consumed to cause the problem.
The good news is this can be treated with diet alone (I have never used sucraid) very successfully. I live a normal life, eat out at restaurants and at friends places without too much hassle.
Best with the assistance of a good dietitian. The first thing you need to do is take your child off all sugar, sucrose and starch (maltase) & learn how to read the information on prepackaged foods. Then you need to gradually reintroduce the sugars at very small amounts until you find out how much they can consume. Mine was done in 4 week blocks and I can now have 6gms of sucrose per day, 60 gms of starch per main meal and very little restriction on sugar (but don't eat a lot of sugary foods anyway).
If you can get a dietitian who is willing to help you with getting data on how much sucrose and starch is in different natural foods is the best way. Alternatively, I am more than happy to send you a copy of my lists but they are nearly 30 years old and do not include everything.
Ok a couple of other tips. I use metamucil daily as because of the lack of fibre that can be obtained through this diet, that helps with the diarrhea. The other thing I keep on hand is DEGAS, I don't know if it is called that everywhere but it is a small minty capsule that helps with wind and bloating. It can be bought over the counter without a script. The other helpful thing to have is an antispasmotic, this helps with sucrose overdoses.
If you have any questions or you want some help please ask, I have been self managing CSID successfully for 30 years now. I am more than happy to help others as I know the grief my mother and I went through to get this managable and would not like to see others suffering unnecessarily.