Posted by suemer @suemer, Feb 28, 2021

I have been diagnosed with this. Supposedly, there are not symptoms. But for the past 6 months, every time I have constant diarrhea, low grade fever, lack of appetite, food doesn't taste good after a few bites, itching, my amylase is high again. My gastroenterologist here has referred me to Mayo. I have been here before. Does anyone have any experience with macroamylasemia?

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Hi @suemer, I feel your pain in having a diagnosis that doesn't have many defining characteristics to go off of. I see that on the 4th you posted in one of the gastro discussions. You stated that you weren't having any bowel trouble, but now that has changed? How long has that been going on?

I know that Macroamylasemia is one of several immunoglobulin-complexed enzyme (ICE) disorders and the condition requires no treatment and may be transient.

Are you currently having any renal issues? Do you think the symptoms could be a side effect of your gastro intestinal issues and not the Macroamylasemia?

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