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CSID - Congenital Sucrase Isomaltase Deficiency : I show a Homozygous Deletion on the SI gene. I believe this is positive for CSID. Anyway, I sure do have the symptoms for it and have had them since I was a baby. Although, I have been diagnosed with IBS, Milk Allergy, Lactose + Fructose Intolerance, Allergic Gastroenteritis, and other food allergies for years. Currently, I eat a 100% dairy + gluten free diet and as low sugar as possible...but still there are mistakes. So, I have a lot of nausea and problems with episodic diarrhea. I have never thought that the doctors had the whole picture. This really makes sense! Anyone else with SI defects?
- 9 years, 10 months ago
If you are interested in being DNA tested for Congenital Sucrase Isomaltase Deficiency here is the info:
FREE SI Genetic Test Kit
http://www.CSIDgps.com/hcps/genetic-kit
For more information about genetic testing or the SI Genetic Test Kit, please call 1-855-736-3274.
SI Genetic Test Kits can only be shipped to physicians/healthcare providers.
There is no charge to the healthcare provider or to the patient for the cost of the kit or testing.
- 9 years, 8 months ago.
I did 23andME and a lot of research on the internet. Sent SI gene raw data and LiveWello results to a group of doctors and researchers doing starch/sugar/IBS studies with DNA attached. They said it was positive and to follow up with a GI who knows about CSID. It took some detective work to find one, but am now waiting for appointment in a few weeks with the only one in the city. The "Gold Standard" is an upper endoscopy with biopsies and Disaccharidase Enzymes Assay lab test - which I asked for 3 years ago with another GI in the city who refused to do it saying "I don't treat those diseases" --I wanted him to verify the IBS/ Lactose Intolerance/Hereditary Fructose Intolerance they seem to think I had...but the diet just wasn't working like it should. I've suffered with this all my life and never thought the doctors had their diagnosis right. WOW! It just CLICKED when a friend's daughter was diagnosed with CSID and I looked it up on the internet. I am doing the first 2 weeks of the CSID Induction Diet and can really tell a difference. I ... More
- 9 years, 8 months ago.
Hello, I am currently searching for the SI gene template or report and I m unable to find one. Can you be of assistance helping me locate it? Also, what lab performed your DNA tesyting for CSID and what was the cost?
thanks
- 9 years, 8 months ago.
Had a confirmed DNA test positive for Congenital Sucrase-Isomaltase Deficiency , so now awaiting an appointment with a GI who is supposed to be familiar with this rare carbohydrate digestive disorder. The gold standard diagnosis is an upper endoscopy with biopsies so that we can figure out which of the 5 kinds it is [but I can eliminate 2 of them from my personal history with foods]. In the meantime, I am using the first 2 week of the Induction Diet which is safe to use without enzyme replacement [only available by prescription, and not a cure-all anyway]. Having to relearn how to eat has been an adventure.... but, I am also feeling better too.
- 9 years, 9 months ago.
I deal with a lot of allergies.
I would find a Naturopathic or integrative MD doctor who uses genetic testing and interpretation.
An allergist might help as well. Not sure where you live but. Allergy Associates of Lacrosse is really good!
http://www.allergyassociatesoflacrosse.com/default.aspx
- 9 years, 9 months ago.