I have increased slowly since diagnosis, now taking 14 25k with majority of meals, I will alter slightly if I’m eating something with less/more fat and protein. I’m eating a fairly healthy diet as I’m also trying to lose weight. It doesn’t matter what I eat nothing helps. I’ve tried taking all tablets up front, staggering them throughout the meal, nothing helps. I don’t know what more to do?
I’ve been in contact with my gastro who informed me that she was leaving the trust so couldn’t offer me an appointment. I’m currently on a waiting list for an urgent appointment to get further tests done but I have to wait until another gastro starts. I’ve been told to try different medication, none of which helps and the gastro said the next route would be a gastroscopy for D1 and D2 biopsies and a colonoscopy to check for IBD.
I recently found out my stool sample from January tested abnormal for calprotectin but nothing was done with the results. I’m not entirely sure what it means but I just want to be normal again
Of course I do not know how much function you still have left, but is there a reason you are taking such high levels of Creon? You are taking 10x more per meal than what I started with. If I take too much I will get nausea and burning in the stomach. It is how I roughly gauge if I need to adjust my dosage. If too low, I will notice more intestinal distress and more unpleasantness in the stool. If too high, nausea and burning.
Have you verified the impact of your dosage with a 24 hour fecal fat test? In the beginning I found it better to work with a steady amount for a few months, perform the test, and adjust. The starting amount was based on 500 units per kg of body weight.
Another important factor. Have you checked for bacterial and/or yeast overgrowth? This was a direct effect of diet and EPI and caused me huge distress, food sensitivities and nausea. Have you checked for nutrient deficiencies using urine metabolite testing? Genova Diagnostics has great tests, such as the NutraEval FMV that helped me a great deal with all these areas.You can PM me any time if you need more specific details.
These were some of the books I acquired on Amazon that really opened my eyes, and provided so much more useful info than my gastro had been able to in order to feel better.
The New Primal Blueprint - Great food and healthy lifestyle info.
Primal Pancreas: Pancreas Damage Survival Guide - Very detailed and practical EPI info.
The Keto Reset Diet - Great food info for temporary reset of diet.
