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CSID Diagnosis and how are you dealing with it?
Digestive Health | Last Active: May 16 11:24am | Replies (6)Comment receiving replies
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 .
Replies to "I was just diagnosed about a month ago and my dr prescribed sucraid . I’m fighting..."
@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/
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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?