New diagnosis of PEI Advice please - Chronic Pancreati...

Chronic Pancreatitis Support

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New diagnosis of PEI Advice please

TFH1 profile image
TFH1
3 Replies

Hi all. I have Type 1 Diabetes, Coeliac Disease and Pernicious Anaemia. I've just had a call from my consultant to say I also have tested strongly positive for PEI. He has prescribed the enzymes and an acid inhibitor.

Can I ask those of you who have been on this journey whether you felt significantly better for taking the enzymes? Other than digestive symptoms, I have weak, ridged nails and quite severe hair loss . I have never been able to get my Ferritin above 20 despite supplementation. Has anyone seen improvement in these types of symptoms? Anything else I should know? Thanks for any advice.

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TFH1
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Paula1710 profile image
Paula1710

Pernicious Anaemia and coeliac I believe are causes for PEI and can inhibit vitamin absorption I too have severe hair loss and struggle with ferritin.iron tablets I think have given me gastritis.My dermatologist said ferritin needs to be over 50 for hair regrowth and stop loss.Ive tested negative for PA and coeliac loads of time.They started me on enzymes as my FE was low on 1 occassion.They didn't work for me but loads of people have had improvement with them.If your stool sample was a bit runny it can cause a low reading.i insisted on a repeat as mine at 23 was loose.It came back at 424.I too have loads of digestive symptoms and undergoing tests if your consultant has advised them then see if they help Have they not suggested iron injections or won't they do them unless you have anaemia? I'm going to ask my gastro Tuesday as iron tablets are making my stomach worse I am not medically qualified this is just my experience

TFH1 profile image
TFH1 in reply to Paula1710

Have you read this info on iron? helvella.blogspot.com/p/hel...

Skye_MC profile image
Skye_MCAdministrator

Hi TFH1 👋 We have some resources on our website you might be interested in while navigating PERT for PEI – hope these help!

Video Guide: Dosing Pancreatic Enzymes for Adults: mission-cure.org/dosing-pan...

Webinar: Pancreatic Enzyme Replacement Therapy: mission-cure.org/pancreatic...

Blog: My Experience with Pancreatic Enzymes (PERT): mission-cure.org/my-experie...

Expert Q&A: EPI and Pancreatic Enzymes: mission-cure.org/epi-and-pa...

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