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!
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.
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 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.
@@solar_bio2779 I honestly don’t follow a diet. I have some things I completely avoid like ice cream, regular pop, desserts, and coffee (I’m also lactose intolerant). But for the most part I just put up w the symptoms bc at least I know what’s causing it. Have had several other issues related to it and heard it increases the risk of colon cancer.
@@solar_bio2779 I’m sorry to hear that ): You’re gonna be okay. It’s definitely hard to deal with but you will start to learn your body. I still have bad days where I can’t leave the toilet. I used Sucraid as a kid but don’t anymore. I also never use Pepto Bismol but I bet it would help. Just be gentle with yourself. It’s not your fault you’re struggling and you’re not alone ❤️
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.
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 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 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
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.
Will and Chasty Reed My daughter is almost 16 and was diagnosed 8 years ago. There is a wonderful support group on facebook called csid parents and patients.
@@heidiwalbourn5968 thank you so much! I don't have a Facebook account but I will make one and search for it. It's been so hard! Thank you for reaching out!!!
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.
I having been suffering with gut bloating where look like am past 9 months pregnant . the only time I have a flat stomach is when I use go-lytely co lytely or Suprep anf laxatives along with stool softners to clean the colon out completely, then I just stay on a liquid diet for a week or two and then resume regular foods for a week to two and start the cycle over with . Well 2 weeks ago I walked into my doctors office and demanded help . He looked at my belly and said I think you have gut fermentation, I'm gonna send you to have a breathe test . Ohhhh boy when I got to the testing stie the tech began the test and came in and said, honey your levels are too high its' 38 it needed to be between 15 to 20 for her to began . so she said we will repeat the base line in 30 minutes. she comes back in and repeat the test only for the number now to be even higher at 62. so I had to wait another hour and finally it went in the range where she could began the test . Mind you this test takes 3 hours and you blow in the bag every 15 minutes. after the 4 blow which is the first hour I hit the 60 mark again then 70 then 100 and then 130 by the end of the test .she came in and said, honey your doctor will be calling you real soon . Surely the doctor had me to return to his office and he had to refer me back to GI so they can do a EGD for biopsies to verify SIBO . Had the biopsies on Fri July 22, 2022 which the specimen was shipped off to the Mayo clinic hospital from New Orleans and on July 27, 200 just a few days later I had the results in my portal before the GI doctors seen it . UNBELIEVABLE !!!!! I was positive for SIBO which stands for SmalIntestine BOwel Overgrowth of bacteria, I was also diagnosed with IBS IBD along with Celiac Autoimmune disease and positive for 5 Disaccharide Autoimmune Disease which showed I have no enzymes that the gut is suppose to have. Now I have to go on this medicine called Succraid . have not started that yet , I:M very concern about taking it simply because I have type 2 diabetes , which the doctor is telling me these ailments is responsible for having diabetes. Almost 30 years of my life have been stolen from me. At 54 years old, I have always considered myself ad existing not living . Yes this is a very expensive drug . still don't know how much if any will blue cross wll pay . f all fails Ill just go back to the way I was and just accept one week on, one week off way of life. My opinion is that more doctor need to be trained and educated about medical issues outside the box .
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!
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.
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!
What the symptoms and medications
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.
How are you doing now I’m struggling with this and suffering
@@solar_bio2779 I honestly don’t follow a diet. I have some things I completely avoid like ice cream, regular pop, desserts, and coffee (I’m also lactose intolerant). But for the most part I just put up w the symptoms bc at least I know what’s causing it. Have had several other issues related to it and heard it increases the risk of colon cancer.
@@bee_beautyfulll I’m only 17 I’ve had chronic symptoms all this time took me 3 years too finally get diagnosed right now I’m feeling it the worst 🥲
@@solar_bio2779 I’m sorry to hear that ): You’re gonna be okay. It’s definitely hard to deal with but you will start to learn your body. I still have bad days where I can’t leave the toilet. I used Sucraid as a kid but don’t anymore. I also never use Pepto Bismol but I bet it would help. Just be gentle with yourself. It’s not your fault you’re struggling and you’re not alone ❤️
@@bee_beautyfulll thank you 😊I find comfort in knowing what I have and not being in the dark anymore wondering what’s wrong with me
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.
My child is 35 and just diagnosed. No, weight loss or malnutrition. Just a lot of stomach issues as he aged.
35 years ?
I’m 34 and just got diagnosed today
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 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)
i was fine my whole life but was diagnosed at 18 when i randomly stated feeling very ill
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
It took me 5 years to get diagnosed ....
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.
Our 13 year old daughter was just diagnosed with this in March. I am looking for support. Any support groups?
Will and Chasty Reed My daughter is almost 16 and was diagnosed 8 years ago. There is a wonderful support group on facebook called csid parents and patients.
@@heidiwalbourn5968 thank you so much! I don't have a Facebook account but I will make one and search for it. It's been so hard! Thank you for reaching out!!!
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.
I relate, fructose is fine for me.
CSID is genetic so I was born with this
That Sucraid is $8000 real????
It is but they have a patient assist program to help with the cost if your insurance doesn’t cover it.
Yes 😔
I having been suffering with gut bloating where look like am past 9 months pregnant . the only time I have a flat stomach is when I use go-lytely co lytely or Suprep anf laxatives along with stool softners to clean the colon out completely, then I just stay on a liquid diet for a week or two and then resume regular foods for a week to two and start the cycle over with .
Well 2 weeks ago I walked into my doctors office and demanded help . He looked at my belly and said I think you have gut fermentation, I'm gonna send you to have a breathe test . Ohhhh boy when I got to the testing stie the tech began the test and came in and said, honey your levels are too high its' 38 it needed to be between 15 to 20 for her to began . so she said we will repeat the base line in 30 minutes. she comes back in and repeat the test only for the number now to be even higher at 62. so I had to wait another hour and finally it went in the range where she could began the test .
Mind you this test takes 3 hours and you blow in the bag every 15 minutes. after the 4 blow which is the first hour I hit the 60 mark again then 70 then 100 and then 130 by the end of the test .she came in and said, honey your doctor will be calling you real soon .
Surely the doctor had me to return to his office and he had to refer me back to GI so they can do a EGD for biopsies to verify SIBO .
Had the biopsies on Fri July 22, 2022 which the specimen was shipped off to the Mayo clinic hospital from New Orleans and on July 27, 200 just a few days later I had the results in my portal before the GI doctors seen it . UNBELIEVABLE !!!!! I was positive for SIBO which stands for SmalIntestine BOwel Overgrowth of bacteria, I was also diagnosed with IBS IBD along with Celiac Autoimmune disease and positive for 5 Disaccharide Autoimmune Disease which showed I have no enzymes that the gut is suppose to have. Now I have to go on this medicine called Succraid . have not started that yet , I:M very concern about taking it simply because I have type 2 diabetes , which the doctor is telling me these ailments is responsible for having diabetes.
Almost 30 years of my life have been stolen from me. At 54 years old, I have always considered myself ad existing not living .
Yes this is a very expensive drug . still don't know how much if any will blue cross wll pay . f all fails Ill just go back to the way I was and just accept one week on, one week off way of life.
My opinion is that more doctor need to be trained and educated about medical issues outside the box .