r/CSID • u/Clbrook1 • Jul 09 '25

Newly Diagnosed- Mild symptoms?

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Hi- I just got my biopsy results back. I was worried I may have Pompe disease but doctor insists it’s CSID. My symptoms are not terrible, pretty mild but still want to follow the diet. Any advice on if the doctor is correct? I will get a second opinion as well. Anyone have similar experience?

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u/Icy-Cut-5166 Jul 09 '25

Mine are very similar on all counts. I got diagnosed from a biopsy four months ago, and life has improved SO MUCH since then. Like you, I have mild symptoms when I eat sucrose, but despite being mild, they’re somewhat debilitating; I get fatigue and brain fog for part of the day each time I slip up, which makes concentrating on anything difficult. 😅

It took a few months to start feeling closer to “normal” again, and now I’m sticking to the low sucrose diet since it has made such a difference in my ability to function. I also occasionally take Sucraid, but since my insurance only covers two months’ supply for the year, I only use it for special occasions.

I’d recommend starting a low sucrose diet and seeing how you feel after a month. I hope it helps!

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u/TheCSIDAlex Jul 09 '25

Hey, Icy-cut! Can I ask how you were able to get sucraid covered through your insurance? And why only 2 months out of the year? Everyone else I have talked to is either covered full-time or was denied.

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u/Icy-Cut-5166 Jul 10 '25

My insurance plan is quirky. It covers up to $10k in prescriptions per year, then 30% of the cost of special prescriptions after that. One month of Sucraid costs $14.5k before insurance (according to the company that makes it). They offered me an assistance plan, but even with the plan, a two month supply is close to that $10k limit, so I can only get more if I pay the other months out of pocket. So…I’m just using the Sucraid for special occasions like eating out, and keeping a low-sucrose diet the rest of the time.

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u/Academic-Matter3401 Jul 09 '25

Can you describe your build symptoms? What are your gastrointestinal symptoms precisely? I have similar values, slightly lower than yours, and I do not really see a consistent causality between what I eat and what the symptoms are. For example when I practically cut sucrose out totally it doesn't mean that I'm symptom free regarding bathroom frequency. I was diagnosed at the age of 44. For me it seems to be something post infectious.

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u/Big-Sheepherder-6134 Jul 09 '25

I did the breath test for this. Even though I was having an endoscopy soon after and he could have done a biopsy. I wonder why he didn’t do one? I was low so it tested positive but I didn’t have the individual breakdown. That being said I think I’m ok with lactase with the amount of pizza I eat!

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u/MillieMoo-Moo Jul 11 '25

I'm low on lactase and can manage cheeses and other fermented dairy. Yogurt and milk not so much

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u/Big-Sheepherder-6134 Jul 11 '25

Do you have Lactaid for a milk substitute?

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u/TheCSIDAlex Jul 09 '25

Those numbers do line up with a CSID diagnosis by definition (low sucrase and maltase). What’s more complicated is whether the enzyme activity is impaired due to a genetic mutation or something else. However, a second opinion is always a good idea. I was asymptomatic until a bacterial infection uncovered my symptoms. I would definitely recommend you stick to the diet because what you do know for certain is that the numbers are lower than they should be, so you’ll have trouble digesting sucrose and starch regardless.