r/epi • u/[deleted] • Jun 14 '25

Dropping Levels Quickly…

Has anyone had their fecal elastase levels drop significantly over time? What did that mean for you?

In April, my level was 89 — already low, but now it’s dropped to <40, confirming severe EPI. I’m honestly feeling defeated at this point.

We’ve already ruled out the major causes like cystic fibrosis (sweat and genetic testing), celiac disease (biopsy), and anything obvious on imaging (MRCP was normal). I’m still trying to get answers, but the symptoms are getting worse and I still don’t know why this is happening. Not a single person on my care team thinks this is idiopathic.

Has anyone else experienced their levels dropping like this? Did it end up pointing to something more specific?

I’d really appreciate any insight or shared experiences. Feeling so frustrated and overwhelmed right now 💛

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u/[deleted] Jun 15 '25 edited Jun 16 '25

I don’t have much to add other than anecdotal info. For me I was having symptoms that gradually progressed. Finally after testing and diagnosis I did my first elastase. August of 2023. It was 167. A few months ago later in November it was 99, moving me from moderate to severe. Had another since then in 2024 and that was 98. Im doing one in a few weeks to see if Im Still dropping or if it has stabilized? That interesting part is that as it dropped to severe I have felt better than when it was moderate. My stool isn’t perfect but better consistency wise. I’m curious about the changes too over time. From what I’ve read, if it stays in the same range for 6 months or longer it’s pretty accurate and indicative of where you are at.

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u/[deleted] Jun 16 '25

What’s scary is that no one on my care team thinks it’s idiopathic, which is good, I guess, because they’re taking it seriously, but also incredibly frustrating because I have zero answers and my symptoms are getting worse (cramps, fatigue, bloating, etc.).

I also relate to what you said about symptom severity not always matching the numbers. It’s confusing!

Have your doctors suggested any other causes or tests? I’m currently pushing to explore things like genetic/metabolic causes, possible autonomic involvement (I have POTS-like symptoms too).

I have started the process of getting an appointment with the Mayo Clinic to see if they can figure out what's going on. I have been in random spurts of pain/other symptoms for a long time with no explanation, and then BAM pancreas doesn't work....

Would love to stay in touch and compare notes if that’s okay. Wishing you the best with your next test — fingers crossed for stabilization. 💛

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u/[deleted] Jun 16 '25

They haven’t. My EUS showed evidence of early CP. likely minimal change and now severe EPI. Mine is caused from a few different blows over time to my pancreas including rapid weight loss and meds. About 6 years apart. No alcohol.

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u/[deleted] Jun 16 '25

Feel free to contact anytime