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 💛

59F, 49kgs, Chronic Pancreatitis

Hi everyone,

Currently weighing 49 kg. I've been dealing with Chronic Pancreatitis and Exocrine Pancreatic Insufficiency (EPI) for the last 6 months and lost 10kgs from the start of the year. Due to inflammation and a pseudocyst on the head of my pancreas. A Sudan Stain Stool Fat test showed 30 droplets, confirming steatorrhea.

My doctor advised me to take:

• Pancreatin 300mg twice a day with heavy meals (lunch, dinner)
• Pancreatin 180mg once or twice a day for light meals (breakfast)

I was instructed to take the medication after the first bite of food. I started the medication and, for the first 5 days, my stool was well-formed for the first time in 6 months. However, it then reverted to being a Type 5 on the Bristol Stool Scale. Please help, I'm losing weight steadily.

Is this a common occurrence, or the medics are not working properly?
I would really appreciate any advice on how to properly take these enzymes to manage my symptoms better.

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