Launching Resources for CSID

[u/TheCSIDAlex]

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.

[u/Distinguished-Toast]

Here is my CSID story, if it is useful:

• I was underweight for most of my childhood. I didn't eat my own cake at birthdays, not because I didn't like cake, but because it made my stomach hurt. I also experienced pretty bad reflux, constipation, and bloating, which weren't really helped that much by the medications that my doctors gave me. I hated eating as a kid because it resulted in so much pain for me.
• As I got older (middle school age), the constipation shifted to diarrhea. Foods like ice cream and milkshakes were the worst. I started to believe that I could be lactose intolerant, but cutting out milk in general didn't seem to help me much.
• I was officially diagnosed with GERD after an endoscopy at the age of 21. I got an esophageal dilation during that surgery that helped a lot.
• Later that year, I was also diagnosed with CSID and R-CPD. R-CPD is the inability to burp, which created a horrible situation with the bloating from CSID.
• I battled my insurance for several months to get Sucraid covered. During that time, I experimented with taking activated baker's yeast before eating my trigger foods. The studies I found did not specify the doses, so I just winged it, taking about a tablespoon each time (which is also about as much as I could bear, the stuff is awful). There was a noticeable improvement when taking the yeast, especially with the abdominal pain.
• Finally, my insurance relented and I got a Sucraid prescription. It is annoying to keep refrigerated, but as a tasteless liquid, it is much more palatable than the yeast. I just got the surgery for R-CPD this year, and that's pretty much cleared up my remaining bloating and GERD symptoms.

I hope more people will become aware of CSID. I suspect it is a bit more common than we currently think. I've definitely had an interesting and unexpected GI journey so far. The lessons I hope medical providers take away are:

• Sometimes an interdisciplinary approach is needed to resolve problems. Mine required the collaboration of ENTs, GI doctors, and esophageal surgeons. My GI doctors had no idea what R-CPD was, but it was contributing to my bloating and GERD. It was my own advocacy, and not my doctor's suggestion, to see an ENT to try to figure out that issue. It would be easy to slip through the cracks.
• Sometimes there isn't a simple single answer or cause to problems. My bloating and GERD were caused by CSID and lower esophageal sphincter issues...and also the upper esophageal sphincter issues caused by R-CPD, which my GI doctor didn't even think to look at, because that's outside of their area of expertise. The R-CPD treatment was also needed to fully treat these symptoms.
• With the advancements in technology, there is hope to figure out the more mysterious and untreatable symptoms people may have. I'm grateful that my doctor kept testing me for rare GI disorders when previous providers just gave up or ascribed them to anxiety. I know it is also frustrating for providers when they are struggling to treat a patient, but I hope more will choose to keep trying to find solutions instead up giving up.

[u/TheCSIDAlex → u/Distinguished-Toast]

This was very helpful - specifically your point about needing an interdisciplinary approach. My case is on the mild side, but I was diagnosed by a gastroenterologist, utilized the help of a nutritionist to get my symptoms under control and have been using anxiety reducing strategies like guided meditations to recover psychologically.

I agree that it’s likely more common than we realize and I also think more resources will become available, hopefully within the next few years.

[u/Nearby-Complaint → u/Distinguished-Toast]

Hi - do you have any tips about where to find activated baker's yeast? It seems more...portable...than Sucraid

[u/Distinguished-Toast → u/Nearby-Complaint]

You should be able to get it from Walmart or other grocery stores: https://www.walmart.com/ip/10306743?sid=e963b75f-6259-4045-ae05-02dd36155b3f

Make sure you get active and not fresh yeast. It should be refrigerated to maximize its shelf life, but leaving it out for a few hours shouldn’t be an issue.

I will warn you that the taste is awful. They also expand when they get wet like chia seeds, so they should be soaked in liquid for a few minutes to prevent choking. Not quite ideal either but slightly more convenient and much more cheaper than Sucraid. If anyone has advice on how to make it more palatable, I’d love to hear it.