My CSID Life

Picture it: November 2021, just a few weeks before Thanksgiving and I am the sickest I have ever been and I have no idea why. My stomach hurt, my back hurt, pretty much everything hurt and I wanted my mom. I kept telling myself that this is my normal because I have irritable bowel syndrome. However, there is no way any of this was normal. After a weekend of not being able to keep anything down, I called my GI doctor and made an appointment.

I had planned everything I was going to say to my doctor, starting with “There is no way this is IBS!” The appointment lasted over an hour with my telling anecdotes of not being able to eat certain foods now that I enjoyed two months earlier. I went down my list: “I can’t eat Apples, Broccoli, Sugar Snap Peas, Sweet Potatoes, Carrots, and Red Onions just to name a few. It honestly feels like my body is revolting.”

My doctor looked at me curiously and asked if I could recall what I ate before this last stomach upset. I mentioned eating a bowl of peanut butter and chocolate granola cereal for lunch one day. I was short on time and knew it would be quick. The next day, my stomach didn’t feel good. It felt like a burning sensation with a fullness that lingered all day. However, because I had IBS, I just figured this was a part of it. This is my normal. That day happened to be another busy day for me, and yet again I had another bowl of that peanut butter and chocolate granola cereal for lunch. The next day my stomach felt horrible and everything that I ate for breakfast didn’t stay down.

My doctor told me she had an idea but didn’t tell me what it was. She left the room, only to return with this Sucrose Breath Test. She wasn’t certain but she had a hunch. She told me to take the test and mail it in and we’d go from there. The breath test was easy. I had to drink a sugar solution and blow into four tubes over 90 minutes. As I was sealing each tube and putting them in the box to be mailed, I remember crossing my fingers for this test to come back positive. There’s a phrase I never thought I’d say aloud.

It took about 2 weeks to get the results and the test confirmed what I never knew could be a possibility. I had CSIDs. It stands for Congenital sucrase-isomaltase deficiency. What exactly does that mean you ask? Well, my body does not make enough enzymes to process sucrose (table sugar) or starches. As I like to tell people, anything that tastes good, I can’t eat.

However, all jokes aside, I felt so relieved knowing that I now had a diagnosis of the thing that had been causing my stomach issues, issues that began back in February 2019. Doctor after doctor would run several tests only to tell me that everything looked fine. However, I never felt fine. As an example, I had an upper scope done, which showed that everything was normal. When I talked to the doctor, all she was to go gluten-free and that my problems should go away. They didn’t.

So, how could someone like me go undiagnosed for so long, especially if I was born with this? This is a congenital disorder after all, or it is? I recently learned that this condition can also be acquired (ASID) if one has experienced damage to the gut. Taking several strong courses of antibiotics, as an example, can damage the gut lining, producing ASIDs for many people.  Was my SIDs congenital or acquired? I don’t think I’ll ever know the answer to that. What I do know, however, is that because this is such a rare disorder, there is not much information that exists about it. Enter this blog.

My hope as a conductor is to bring awareness to this disorder and show you what it means to be a person living with CSIDs. My life went from being very simple to being very complex where food is concerned. It’s not always easy, especially while traveling. I can’t just pick up a bag of chips in the airport if I’ve forgotten my snack and sadly, airports are not CSID friendly. However, I refuse to allow my CSIDs to define me.

This is me, and this is my CSID Journey. I hope you enjoy the ride.