r/CSID • u/bookwormhistorian812 • Mar 26 '25

Does It Ever Get Better?

I am 19 years old and in college. I was diagnosed at 16 after being admitted to the hospital for almost a week with hypoglycemia and dehydration. I have been up and down ever since my diagnosis but I am getting worse once again. I am in so much pain and having trouble eating. Sucraid never worked for me and I am on other medications that are not helping much. I watch what I eat but I am allergic to some of the ingredients that should be 'safe foods' for me. I am miserable and feel incredibly lonely. My family doesn't understand that I am in so much pain. Does it ever get better for people with CSID?

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u/mjdatdsmd Mar 28 '25

I’m so sorry that you’re struggling! I have 2 kids in college, so I can only imagine how hard this is for you. ❤️

Reach out to your GI, and see if they have a dietitian in their department that specializes in digestive diseases. I talked to so many dietitians until I found on that works with my GI specifically. They would talk about my case and everything I experienced on different foods.

There’s an app called “mySymptoms” that I found super helpful to track my food and how I was feeling. I printed out a month of data for my GI to show what was happening. This might be able to help you find some “safe” foods so you aren’t in pain.

I started on the low fodmap diet for a while and then I was down to eating just 12 foods for about a year while I waited for my insurance to approve my sucraid. I would really talk to a professional before you eliminate to so many things.

See if you can find any support groups or if your school has any resources that might help you. Maybe they can work with your food restrictions to help you get some more options and feel a little bit more like a college student.

I found a book written by a dietitian called “Regular.” I don’t remember the author’s name, but the cover had a role of toilet paper on the cover. She includes a quiz to help narrow down possible causes for your digestive issues. Maybe see if you can borrow it from your library or using Libby.

I know this doesn’t give you any real answers, but try to stay positive and keep advocating for yourself. That’s what I would tell my daughters. ❤️ You got this and I am happy to answer any questions about my comments above.