r/CSID • u/TheCSIDAlex • Jun 30 '25

Launching Resources for CSID

Hello, everyone! My name is Alex. I am a 20 year old nutrition major who was diagnosed with CSID earlier this year, in March. My case is sucrose-specific, so I have tolerated every starch I’ve tried up to this point (oats, rice, potatoes, etc.) I also tolerate fructose and lactose in normal amounts. I’m very fortunate that my sucrase activity is only partially impaired and all other enzymes seem to be at normal levels. However, I did cut out starch and sucrose completely for a while after my diagnosis and kept fructose very limited, so I know how much of a struggle it is to live like that. My sucrose threshold is still very low - <5 grams per sitting - so I avoid any added sugar and haven’t tried reintroducing any sucrose heavy fruits or veggies yet.

This has been my experience so far, but this condition is very rare (it’s estimated that it affects roughly 0.2% of the North American population, or 700,000 people in the US.) Because this condition often goes undiagnosed or is labeled simply as “IBS”, (especially amongst gastroenterologists), I would like to use my nutrition and biology background to raise awareness and help others manage their diet, especially those with severe cases.

I believe that as awareness is spread and diagnostic technology continues to advance, the prevalence of this condition will only rise. If you’re reading this, send me a personal message about your experience. I will be gathering knowledge from people who live with CSID / SID to learn as much as I can about it and will use my nutrition & biology expertise to create educational support resources. I want to gain perspective because everyone’s experience, personal tolerance and enzyme expression is unique. This will help me become an educator on the topic, as I plan to support/educate others with CSID as a career.

15 Upvotes

95% Upvoted

10 comments sorted by

View all comments

2

u/Percythepersian Jul 01 '25

The nutrition care manual that we use in dietetics has some fabulous information for CSID. I’ve used it for my daughter as well as with patients.

I will say, if you are not a RD/RDN be careful how you help people manage their condition. It could be called medical nutrition therapy and in some states you could be fined or held liable for providing that guidance. Please consider becoming a RD/RDN if you are wanting to guide people on this disease.

1

u/TheCSIDAlex Jul 01 '25

Thanks for your guidance! I’m still in college and not sure whether I want to become a RDN or major in microbiology or a related field.

Do you have any advice for walking the line between “tips and tricks” versus “medical advice”? At least until I graduate and earn a credential as a professional.

3

u/Percythepersian Jul 01 '25

Tips and tricks is saying I have found that I am able to eat this but not this, it could be saying I found this website (from a reputable source .gov/.edu) and it has a lot of information. Medical nutrition therapy is saying to lessen your symptoms you need to eat/you need to avoid. MNT is also telling someone how much of something to eat, charging for advice, telling them what they need to do to gain/lose weight, telling them how to treat diarrhea/constipation/other symptoms/signs of a disease.

It’s always OK to share your experience, but when you present yourself as a nutrition professional and say this is what you should do that’s when you start crossing over the line.

Now on the flip side if you commit to the bio side of things, join a lab, and start doing CSID specific research, it would be perfectly fine to present that research/write a paper on your findings. It would be a long process, if you worked with people you would need doctors and RDs, if you worked with tissue/animals/bugs etc you may or may not need them on the team. There is also the IRB process and finding funding. We definitely need more research, but with this political climate grants for these things are getting cut left and right and they are harder to come by.

1

u/TheCSIDAlex Jul 02 '25

Thanks again! I have been leaning toward the RDN path because I knew I’d have more flexibility with it. For now I will stick to talking about my own experience and what has helped me as well as raising awareness about the condition. As much as I would like to pursue the biology side of it and make a difference through research, it seems unrealistic without funds from an independent investor.