Congenital Sucrase-Isomaltase Deficiency- CSID

TwoCuteChicks ChloeAmber, my son was diagnosed with CSID at 5 months old he is now 2 1/2 and I know that the Sucraid is very expensive, and thankfully our insurance does cover it, however about 2 months ago when ordering a refill on his medicine they told me about a program they had that I could see if we qualified for so the medication would only cost $5.00 a month.  Now i'm not sure if there is only one place that a person can get sucraid from, but we get ours thru CuraScript, however if there is maybe you could have your Dr. look into getting you a script thru them, I know there is quite a bit of paperwork involved, but if you could take the medicine with every meal like you should, you would probably feel a whole lot better. 

It took me 5 years to get diagnosed ....

I wasn't diagnosed until I was 9 years old and suffered for so long as I was growing up. I'm glad there's more awareness being raised about this deficiency because there was very little information 7 years ago.

My dad has this disorder and I may have it as well. I don't know if I have it, but being in my early twenties, I basically ignore it now. With all the information on how sugar is a toxin, I think it's probably a blessing to have this disorder; assuming its not too severe.

its been 3ys and a half we had been here and there pushing drs even moving out of state. To finally find a doctor suspecting this.

Our 13 year old daughter was just diagnosed with this in March. I am looking for support. Any support groups?

So this is one of the top vids for CSID - but this video clearly shows extreme cases... I was diagnosed with sucrose intolerance and I have never had such terrible symptoms. It's important to know that you could have sucrose issues even if you're not a toilet hog!

I'm 41. Had symptoms for 3 years, and this year I sat face to face to a Specialized doctor and he Said when I can't eat sucrose or maltose it must be an Intolerance of Fructose. As I answered that I can eat 50 Grams of Fructose without problems he shook His head and Said it can't be possible, there is no Intolerance of sucrose.

That Sucraid is $8000 real????

i was fine my whole life but was diagnosed at 18 when i randomly stated feeling very ill

i was born with csid and from my experience it gets alot better the longer you have it. im 13 right now and i can predict by the time im an adult it would be so much better that it would be like i dont even have it. (by the comments i can see that most people who have it would have it all their life, im not sure)

My child is 35 and just diagnosed. No, weight loss or malnutrition. Just a lot of stomach issues as he aged.

My 8 year old son just got diagnosed and we just received the SUCRAID. I’m hoping to see a difference. He is very skinny and frail. My 4 year old shares clothes with my 8 year old. Really hoping I’ll see some weight gain

My 2.5 yo was just diagnosed with CSID about 2 weeks ago. We initially thought avid reflux. He's been on Famotodine for over a year. It's minimizes the symptoms, but does not alleviate completely. After a year of tests, and referral to a GI, he had an endoscopy last month.
I honestly had questioned myself many times. Was I exaggerating his symptoms? Was I promoting hypochondriac behaviors?
I wasn't. And we have an answer. His pediatrician kept pushing too, and I thank God for her. ❤

I was not disappointed until 3 years ago. I was diagnosed when I was 66 imagine going through all this pain from this long. The only medication I can’t take. I also have a wonderful GI specialist.

CSID is genetic so I was born with this

It took over 25 years (and several doctors) for me to get correctly diagnosed. Earlier diagnoses of allergies, food intolerances, celiac, IBS, malabsorption, SIBO, Gluten and Dairy intolerance, lack of vitamin B and D and now calcium kidney stones and thyroid issues. This new diagnosis of CSID and the availability of Sucraid are giving me hope for the first time in so long!