CSID Diagnosis and how are you dealing with it?

Posted by choosejoy @choosejoy, Nov 16, 2022

Hello.
I have had gut issues off and on throughout my life and had different testing by various GI docs. The diagnosis I was given in my 20’s was IBS. After a couple of scary times in the last few years of “unexplained rapid weight loss” I was diagnosed positive for CSID. I’m curious if others have any advice as to what has helped them? BTW I do use Sucraid, digestive enzymes and a daily probiotic recommended by a dietitian.

Interested in more discussions like this? Go to the Digestive Health Support Group.

dbmenger | @dbmenger | Nov 19, 2022

Hi there! After years of IBS diagnoses I was tested and told I have CSID. Yay. So far I am unmedicated except for Starchway, which is made by intoleran and sold on its website. I take it when I know I’ll be eating something not on the CSID diet.
I’m expecting Sucrade, which was ordered by my gastro, to be delivered next week. It’s the only medication for CSID, I’m told. The pharmacist told me Starchway was the same as Sucrade - my gastro disputes this.
Just watch what you eat and if the diet doesn’t work I guess try Starchway or Sucrade. (Sucrade is prescription only and can be pricey BTW.) Good luck!

dh2271 | @dh2271 | Mar 18 7:54pm

I was just diagnosed about a month ago and my dr prescribed sucraid . I’m fighting with the insurance company right now to get the meds , but I met with a dietician and I feel so lost about how to do all this . I feel awful all the time . I’m hoping once I get the Sucraid that it helps , but I am so confused on the diet . I feel like I won’t be able to eat anything . I’m reading all the posts and I am feeling overwhelmed and like I’ll never feel good again . Any words of wisdom would be helpful . I also want to know if the sucraid has worked for anyone and you are still able to eat some of the foods you couldn’t before . Thanks in advance .

Lisa Lucier, Moderator | @lisalucier | Mar 19 12:24am

In reply to @dh2271 "I was just diagnosed about a month ago and my dr prescribed sucraid . I’m fighting..." + (show)

Hi @dh2271 - welcome to Mayo Clinic Connect. Hoping here you will meet others with similar situations to you medically with the congenital sucrase-isomaltase deficiency (CSID) diagnosis who can relate to you and offer empathy and help.

For this purpose, I moved your post to this existing discussion on CSID, started by @choosejoy, who was diagnosed as an adult:

- CSID Diagnosis and how are you dealing with it? https://connect.mayoclinic.org/discussion/csid-diagnosis-and-how-are-you-dealing-with-it/

Please also meet @dbmenger @livefully @dh2271 @lelarkin. @rnewman12 @sueinmn @saucy @elle1233 and @researchmaven also may have something to add. They may have tips on getting through the process with insurance and on how to do the diet and not feel confused. They also can share whether they have experienced feeling good again and freedom from overwhelm.

I realize overall you are feeling lost. However, I'm wondering if there were one or two tips from the dietician you thought might be useful to you, going forward?

Sue, Volunteer Mentor | @sueinmn | Mar 19 8:41am

In reply to @dh2271 "I was just diagnosed about a month ago and my dr prescribed sucraid . I’m fighting..." + (show)

@dh2271 I don't have CSID, but I have lived with gluten intolerance for many years, having to change my diet (drastically) to manage symptoms. At first it felt overwhelming, and there was often the temptation to eat things that I knew I should not. The consequences of eating gluten-containing foods, and how much better I felt on a more limited diet soon taught me that "cheating" wasn't worth it! Now, I have gone so long without most of my "old favorites" that my tastes have changed, and I am no longer tempted.
You said you met with a dietician, were you given a list of safe foods and a food diary to record what you are eating to track what doesn't agree with you?

Here is a concise list to start from:
https://www.csidcares.org/treatment/diet/