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Looking for CSID patients who might have children with CSID symptoms

Hello, my name is Heather and I am from the United States/Michigan. My sister and I were one of the first two diagnosed with CSID over 30 years ago. I am very familar and did the clinical trials with the FDA for Sucraid (the oral meds used to tolerage Sucrose). It is so interesting to hear and see new faces with this disease. We have full mutation of the disease so we can not with stand any sucrose. For us we went 16 years with out the drug, but now I can't imagine (although possible) going with out. It is truley amazing to hear of stories, for my sister and I it seemed like forever and we were the only ones. We have been on Sucraid for 16 years now and conducted the FDA trial and for so many years my parents worked hand in hand with Dr. Treem our of New York.

They are now coming up with mutations of CSID where maybe our children have it. I am waiting to speak with Dr. Treem, as my sister may have a daughter with CSID and I am thinking my daughter may have a mutation to it too. This is all so new and I am looking to gain experience with other patients that have CSID or have a sibling with CSID that may have passed this genetic disorder to there children.

Heather -Age 33
Diagonosed at birth
(My Sister -Age 37 Diagonosed at about 1 year)
(My other sister-Age 35  Does not have CSID)
3 Responses
Avatar universal
hey how are you? My name is Charlotte my daughter has just been diagnosed with this just wondering what your symptoms are? She has low sucrose levels I have drs debating  about it got diagnosed private public health system say  dont think she has it just wondering what you know about the levels do they have to be nil and they say you dont pass blood and mucus but she does she doesnt always have loose bowel motions
Avatar universal
Did you connect with people? We are very close to where you mention and have had CSID diagnosis for 9 years or more
Avatar universal
I found out in December I have CSID. I am really struggling with the lack of knowledge my medical provider has. I am really looking for more people that have this because I still have so many questions and am now seeing signs of my daughter having this.
I was wondering if this gets much worse with age?
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