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Looking for CSID patients

I'm looking for more people that have this. I really feel completely alone in this & I just really want someone to talk to. I know this is rare but I'm hoping to ask some questions.
-Dayna
2 Responses
Avatar universal
MEDICAL PROFESSIONAL
Hi, the prevalence of CSID has been reported to be around 0.2 %. Sucrase Isomaltase Deficiency (CSID) is a congenital disorder characterized by abdominal pain, cramps and fermentative diarrhea after eating. Dietary treatment for CSID is based on sucrose, isomaltose, and maltose restriction. The degree of restriction is patient-specific. You can try to reach patient support groups, they could provide an input for your condition. Regards.
Avatar universal
My daughter was recently diagnosed with CSID and I found a very helpful support group through Facebook (CSID Parents & Patients).  I have already learned so much from feedback from the group when I have questions, etc.  Hope this helps!
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