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New to pancreatic insufficiency. What does this journey look like?
Digestive Health | Last Active: Aug 6, 2023 | Replies (14)Comment receiving replies
I understand completely. You are not alone! Please contact the National Pancreatic Foundation, they are a wealth of information and will help you with any questions you have and also have great links so you can learn more.
It’s not a very well known disorder. I was misdiagnosed for 30 years. All that wasted time and suffering. Ugh.
Now I’m thriving and you can too. Work with a RD (registered dietitian). Please don’t be fooled by “wanna be nutritionists” that have “degrees from diploma mills” that want to sell you supplements! Your best sources are a good Gastro doctor and a RD! Take your Creon and you will learn what is more easily digestible for you!!! All the best 🫶🏽
Replies to "I understand completely. You are not alone! Please contact the National Pancreatic Foundation, they are a..."
To. @sadiecat
Please check out myAbbVieAssist!
My dr never told me about it & I spent thousands of dollars running up my credit card till I heard about it
If you qualify you can get it free. I’m still a work in progress and still learning but the FODMAP diet has helped also.
Best of luck
Hi
are you in Australia by any chance ? Victoria ? im in shepparton neither the local hospitals dietician nor Dr's know correct diet for post Distal Pancreotomy & Splenectomy plus after 8 years if Creohn im now Type 2 Diabetic
Is the Nat Pan Foundation based in Melb or Sydney do you know ?
Thanks for posting 🙏🙏
Cheryl
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I have been trying to locate one in my area who takes Medicare or who will even return my calls! I live in Florida so lots need help. I started Creon & FODMAP in Dec.
I have been on strict FODMAP diet for 8 months & off all supplements till recently when I begged my gastro to let me please take calcium since my osteopenia turned to osteoporosis this year. He was Agst all supplements. I have used the Monash Univ app & bought 2 books
I have read that you shud not stay on strict FODMAP for a length of time. My dr retired & i am waiting to see new one but all things indicate deficiencies.
I want to reintroduce some foods that had been eliminated, but the book on FODMAP is based on being IBS Free! EPI, as you know is in a different league.
1. Have you had any success In reintroducting foods over the years???
2. I contacted names from list of Academy of Nutritions and Dieticians.
Does anyone have any suggestions of how i can get a Dietician who knows EPI
Most were focused on other issues
Appreciate any help, I feel like I am in limbo. Thanks for listening