Congenital Sucrase-Isomaltase Deficiency- CSID

Congenital Sucrase-Isomaltase Deficiency is a rare disorder of the small intestine. Symptoms often overlap with common GI disorders. Dr. William Treem, pediatric gastroenterologist,discusses the diagnosis and treatment.

[tariwaite]

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!

[jonw]

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.

[channelkerr]

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!

[PTStylin]

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. ❤

[bee_beautyfulll]

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.

[XcellsiorConsulting]

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.

[lilred]

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

[Nosmirc]

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)

[DumbRadGuy]

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

[evelincarrasco]

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

[allisongeller]

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

[chrfre]

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.

[savennavanlieshout]

I have it and i was diagnosed when i was about 1½ years old and i had 6 different doctors before i was diagnosed now im 13 years old and when i got older i didn't grow so much and had a lot of symptoms and after using meds and a diet for about 5 years i didn't had symptoms anymore so we thought it was over but now its starting all over again so im on the meds and diet again😔

[roblxgaming]

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. 

[williamreed]

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

[prayaggamerpg]

Hey everyone Im 19 years old i not done bowel biopsy and other test but i have symptoms of CSID like in childhood my mother tell me I have suffering severe gastrointestinal issues like diahrrea vomiting etc and also under nutrition problem but all of that i dont like sweet but it dosnt mean that i dont have craving to eat sweet but mine problem is that my body dosnt accept sugar even in low amount i feel immediate nausea and vomiting after intake sugar iteam so i avoid all type sugar in my diet so please tell me if i have CSID can i fix it please tell me and if i cant fix it so Im not able to eat sugar in whole life

[XcellsiorConsulting]

CSID is genetic so I was born with this