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Pancreatic Insufficiency (EPI)

P

pinewood

Well-Known Member
Messages
792
Location
London
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone. I've been having some abdominal pains and my gastro ordered a faecal elastase test; the result came back at 70 which indicates severe pancreatic insufficiency (EPI). From looking online, apparently approx. 20-60% of T1Ds get this condition. The treatment is enzyme tablets that you have to take with meals.

I'm really worried about what this means for me and my type 1. I have had really good control and low HBA1Cs since being diagnosed 9 years ago so disappointed that this has happened.

Has anyone else been diagnosed with this and/or can share any experiences?
 
pinewood said:
Hi everyone. I've been having some abdominal pains and my gastro ordered a faecal elastase test; the result came back at 70 which indicates severe pancreatic insufficiency (EPI). From looking online, apparently approx. 20-60% of T1Ds get this condition. The treatment is enzyme tablets that you have to take with meals.

I'm really worried about what this means for me and my type 1. I have had really good control and low HBA1Cs since being diagnosed 9 years ago so disappointed that this has happened.

Has anyone else been diagnosed with this and/or can share any experiences?
Click to expand...
Hey there. I’m not familiar with that condition, but it does concern me. How did you come to get diagnosed? It seems something always pops up with T1. I’ll look forward to reading more about this on your thread.
 
Prancy said:
Hey there. I’m not familiar with that condition, but it does concern me. How did you come to get diagnosed? It seems something always pops up with T1. I’ll look forward to reading more about this on your thread.
Click to expand...
I have been having mild abdominal discomfort and loose stools so my GP ordered various stool tests, all of which were normal except the Faecal Elastase test which came back showing severe pancreatic deficiency. Waiting to see a Gastroenterologist to find out what this means but from researching online it looks like I may need to take enzyme tablets with meals as my pancreas isn't producing enough enzymes to digest my food properly.
 
Hi, that’s so interesting as I actually started taking digestive enzymes as a last resort for the IBS I I assumed I had developed around the same time of my type 1 diagnosis 3 years ago. I found immediate relief from all the digestive pain/bloat etc and take one before every meal. I brought this up at my annual review at the hospital and he said the enzymes solving my tummy issues must be conincidental. Regardless I find them life changing and no more ‘IBS’
The pancreas is also responsible for digestive enzymes so it makes sense to me that there can be issues
 
JMoli said:
Hi, that’s so interesting as I actually started taking digestive enzymes as a last resort for the IBS I I assumed I had developed around the same time of my type 1 diagnosis 3 years ago. I found immediate relief from all the digestive pain/bloat etc and take one before every meal. I brought this up at my annual review at the hospital and he said the enzymes solving my tummy issues must be conincidental. Regardless I find them life changing and no more ‘IBS’
The pancreas is also responsible for digestive enzymes so it makes sense to me that there can be issues
Click to expand...
Thanks for sharing! I had never even heard of this condition until my gastroenterologist mentioned it; I was more worried about possible IBD - i.e. Chrons Disease, as I know that is more common with T1D too.

If you Google Exocrine Pancreatic Insufficiency or EPI there are lots of articles and clinical papers that validate it has been found to be present in up up to 60% or more of people with Type 1! I was surprised I'd never heard of it.

Can you recommend the particular enzyme that works for you?
 
pinewood said:
Thanks for sharing! I had never even heard of this condition until my gastroenterologist mentioned it; I was more worried about possible IBD - i.e. Chrons Disease, as I know that is more common with T1D too.

If you Google Exocrine Pancreatic Insufficiency or EPI there are lots of articles and clinical papers that validate it has been found to be present in up up to 60% or more of people with Type 1! I was surprised I'd never heard of it.

Can you recommend the particular enzyme that works for you?
Click to expand...

Hi, I buy Digestizyme from Natures Best, I think you should get free treatment, my dr didn’t want to do any tests on me so I have to buy these but they have been amazing
 
pinewood said:
Hi everyone. I've been having some abdominal pains and my gastro ordered a faecal elastase test; the result came back at 70 which indicates severe pancreatic insufficiency (EPI). From looking online, apparently approx. 20-60% of T1Ds get this condition. The treatment is enzyme tablets that you have to take with meals.

I'm really worried about what this means for me and my type 1. I have had really good control and low HBA1Cs since being diagnosed 9 years ago so disappointed that this has happened.

Has anyone else been diagnosed with this and/or can share any experiences?
Click to expand...
Hi just seen this! I have EPI due to a distal pancretectomy 11 years ago. I was immediately prescribed Creon capsules to take with anything I eat to make sure I get
nutritional benefit from the food. Over the years the dosage has been upscaled but thats no hardship. After I got diabetes dx in 2017 I saw an Endocrinologist at the hospital who stressed how important taking these enzymes are. I control BG by strict LC eating but its possible in the future if I can’t diet control I may be classified T3c and given some insulin. So far so good! I would definitely recommend you ask the doctor about Creon which is the gold standard med for EPI and don’t worry about taking them. They are another tool in the box to keep you well. Best wishes.
 
I’m going to explore taking the enzymes. I have some probiotics that I want to start taking, but just haven’t yet. I’ve had the opposite problem that most of you do, as I’ve had constipation, despite good diet, plenty of water and exercise. Even added fiber…..
 
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pinewood said:
Hi everyone. I've been having some abdominal pains and my gastro ordered a faecal elastase test; the result came back at 70 which indicates severe pancreatic insufficiency (EPI). From looking online, apparently approx. 20-60% of T1Ds get this condition. The treatment is enzyme tablets that you have to take with meals.

I'm really worried about what this means for me and my type 1. I have had really good control and low HBA1Cs since being diagnosed 9 years ago so disappointed that this has happened.

Has anyone else been diagnosed with this and/or can share any experiences?
Click to expand...
Hi, I take OMEPRAZOLE twice daily for help with indigestion as I have been in A&E several times after eating, I am T1 with Acute Pancreatitis, I can’t get diagnosed by any specialist or GP unfortunately due to annual appointments being constantly cancelled and GP doesn’t understand, he tells me it’s above his pay grade!!!!
Anyway, the OMEPRAZOLE helps me.
 
Pancreatin is the enzyme they will be talking about. My dad was in it after he had some massive gi operation. It is marketed as Creon Capsules . It is really expensive but it really helped him and his digestion. It is one of the enzymes in “digestive enzymes” supplements and I used to take them as part of a nutritional therapy. I lost a load of weight and felt great.
 
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