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CSID

I am responding to the questions about Congenital Sucrase Isomaltase Deficency Disorder. My son will be 3 in May. He was diagnosed at 1 year. I know how frustrating it is not to know anyone else with the same disease. I found a support group at www.csid.org that has been some help. You may want to try that. I would love to talk with you and compare our experiences! We are still learning. His diet is very strict, and still he has stomach aches often. However, since we began monitoring his diet, he has had an enormous amount of improvement.
6 Responses
Avatar universal
I am cooresponding with the woman who runs the csidinfo site. She is supporting me in my book project (see my profile)-- and told me that there is a facebook group that you can join to talk to other parents about your child's specific mutation of the disorder. If you join that group, we can keep in touch regarding the cook book as I want to use recipes from all parents in the book.
Avatar universal
Hi,

my son has been diagnosed with sucrose and fructose malabsorption. He is waiting to have a bowel biopsy to see if his enzymes are working at all. I am very interested in the cookbook. I cant find the facebook group can you please point me in the right direction.

Thanks
Liz
669569 tn?1225675527
Hi Liz,

On facebook just type in CSID and click on the group tab at the top.  You should be able to find the group that way.

Tania :)
Avatar universal
Hi my daughter is 6mths old and was diagnosed with csid at just under 5 mths. We are about to start introducing her to solids and it is unknown territory as she is the youngest the hospital she is attending has ever dealt with and she is only the 4 th case in 20 years. Can anybody help us food wise. She is totally sucrase deficient and has very low tolerance for starch. We have tried her with baby rice and it didn't work. We live in Ireland.
Regards
claire
1445949 tn?1285186465
Just a quick note to say our little girl of 2 & a 1/2  was diagnoised in aug with CSID,      ( 0% enzyme) in crumlins children hospital (irl), we also have a 6 mth old who might also have it, we are in contact with dietician there and we have been to herbalist also. we are finding it very hard to get any info on food products\diet & its very frustrating, as any healthcare professional we approach has no clue.
Avatar universal
I have twin grandsons who have just turned 7 months old.  One of the twins has csid the other is a carrier of the gene. We have gone to a "specialist" at Riley's hospital in Indianapolis and he did do the upper and lower gi biopsies and Braxtyn has 0 sucrose enzymes and 0 starch enzymes. We went to talk with the dietrician and Dr about a week ago to find out what mutation he has and what he will be able to eat and both of them did not know anything, I had more information and knowledge about the disease than they did, we came home very upset.  Since then i have talked with a Dr at Cincinnati Childrens Hospital and he is to see Braxtyn. However right know we still do not know what he can eat.  If anyone can help i would for ever grateful.

Grandma, in need
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