Exocrine Pancreatic Insufficiency

I have PA. Like many of you I have been struggling with digestive problems. I take Betaine HCl and a digestive enzyme with each meal.

I developed pain right between my chest and in my back and shoulders. GP Ordered an elastase test and it came back as low 120 in a range where 100 to 200 is moderate EPI and below 100 is severe EPI. It was 185 just 8 weeks ago.

It can be caused by auto immunity hence OA may be a causative factor.

I’m worried in case I have anything more serious wrong with my pancreas and seeing gastro doc on 4th Dec.

Has anyone else on here had this issue and if so can you share any insights?

TIA

[clivealive Forum Support]

Hi Hidden I was diagnosed with a moderate Exocrine Pancreatic Insufficiency (175 <200 -- 1000ug/g>) in March and since then have been taking Creon enzyme capsules with each meal (25000) and snack (10000) (I'm also Type 2 diabetic hence the snacking) and I too have had P.A. - for the past 46 years.

I cannot say that I feel "wonderfully different" taking the Creon but then I guess at the age of 77 I cannot really expect to be "walking on air.

What did amaze me was that my doctor told me that I have probably had EPI since I had gastric surgery at the age of 17 back in 1959 yet I'm still "clivealive"

I am not a medically trained person and wish you well.

[Hidden in reply to clivealive]

Thanks Clivealive. I’ve been suffering with mid tummy pain and back pain hence the elastase test. They’ve stil to scan my pancreas so hope there’s nothing more sinister going on 😔

[clivealive Forum Support in reply to Hidden]

Well, lets hope not. Despite my having the EPI all those years I don't think it caused me any pain but then with my poor digestion due to the surgery who knows what the cause of the various "gut aches" I do have.

Take care now.

[Hidden in reply to clivealive]

Thanks Clive, I appreciate it.

[Marvin22 in reply to Hidden]

Hey Martin.

I have elastae 1 test om 67...

IN Many years it had ben a mysterium Way i have Low elaste.

After 7 years my elastase test it suddenly was 200-312 .. I have no abnormalities in MR, CT and ultrasound...

[Hidden in reply to Marvin22]

Hi Marvin. That is a very very low result. I presume you’re taking Creon? Does it help? I know it helps me. They say my elastase will always be low but I’ve had 3 tests and they have all fluctuated, one to almost normal levels. The latest one is 97 which is very low. Like you I have no pancreas damage and no damage to my biliary tree. Very strange. If you have had EPI then this will have caused IBS as the food you eat would get to your colon partially undigested and caused a pathogenic bacterial overload issue.

[Marvin22 in reply to Hidden]

hey martin.

I have had low elastase for 6 years, but fluctuating.

last year my elastase suddenly had 200-312 divided into 3 measurements over a year ... and I stopped with creon.

suddenly it fell again to 67.

I have no evidence of pancreatitis or other forms of defects and genetic

I have varying stools and intervals, occasionally left upper abdominal pain and undigested food.

all mine

blood tests are normal.

Creon helps A little, NOT much

[Marvin22 in reply to Marvin22]

Do you have any sympt?

[Hidden in reply to Marvin22]

I have pernicious anaemia as well so I have symptoms but mainly the sins in my back due to nerve issues caused by the PA and I have IBS type symptoms too

[patash in reply to Marvin22]

Hi Marvin22, I'm very intrigued with the knowledge that your results shot up so much. I was diagnosed around 6 weeks ago with EPI after going private. I asked the gi if further testing was necessary and he said no......it will always stay the same (145)!!! Like you I have no other abnormalities. I'm trying to get used to Creon but think my dose still isn't high enough> I have to look into this further somehow, but finding there isn't a lot of information out there for this disease!

[Hidden in reply to patash]

Good luck on getting more info. It’s very much trial and error. If your fecal elastase is causing EPI you absolutely need your pancreas scanned and you should ask for an MRCP. This will look at your whole biliary tree including your gallbladder- that’s important because sludge and stones in there can block pancreatic ducts. Please do try and get the scan. If there’s no damage and you’re on 25000 lipase units of Creon you should titrate the dose up until you are forming normal stools. Do this very slowly over a period of days. If you take too many your stools will become soft and you’ll experience some anal irritation - sorry to be direct but just do you know. Your gastro doc should have told you this. Good luck.

[patash in reply to Hidden]

Thanks for your speedy reply Martin. I have had the tests that you suggest and all is clear :). I'm currently on 4 x 1000 per meal and 2 for snacks. My stools are a nightmare, I get chronic constipation and have to take laxatives until I have a normal BM but then it turns to terrible diarrhoea. I've been like this for 2 yeas and they seem to not understand why! I appreciate your words, thanks again.

[Hidden in reply to patash]

That is strange because 1000 is a small dose (25000 is standard) so you’re only taking 4000 per meal - I am taking 75000! I’m glad your test are all clear; I know how much of a relief that is. Your elastase is not too low but when I was at that level I still needed my current level of Creon. I also paid to go privately for a stool analysis test. I had several parasites and pathogenic bacteria and a Candida infection and had to get rid of all of that too. A possibility if you are struggling. It worked wonders fir me!

[patash in reply to Hidden]

I thought that the dose needed increasing Martin. I'll get onto it, thanks for the tip on parasites aswell. Your help is very appreciated. Many thanks

[Hidden in reply to patash]

You’re very welcome. Let us know how you get on. It can feel quite isolating sometimes.

[patash in reply to Hidden]

I certainly will Martin 😊

[helbell in reply to Hidden]

Hi Martin, did your gut specialist tell you to take a proton pump inhibitor as well? Mine insists I do for mild deffinciecy but not happy about taking ppi long term. I'm trying to research my way out of it. He also assures me I can't overdose on Creon when I said I tried raising my side with accompanying symptoms. That included itchy anus! He also said he didn't know why my pancreas was a bit knackered as it looked normal on scans. I might follow up what you recommend, or find out of this was done.

[Hidden in reply to helbell]

Hi Hellbell. No he didn't but then I have PA so I have either no or very low gastric acid anyway that would destroy the Creon. I actually had another MRCP scan and it now shows 'mild atrophy' so I am going back to gastro to understand if this is a progression from my last scan which was 'clear'. I had the a test one done at a different hospital and I am not sure I always get the unvarnished truth with doctors!

[helbell in reply to Hidden]

Ah, of course. I'm hypothyroid and wonder about my GA. Good luck Martin. Thanks for answering. I'm trialing the omeprazole for four weeks.

[helbell in reply to Hidden]

Do you take additional fat soluble vitamins?

[Hidden in reply to helbell]

No. I did take them for a while but my Vit A and D got too high so had to stop. I take that to mean I’m absorbing vitamins just fine. Thankfully!!

[helbell in reply to Hidden]

That's great!