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?
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.
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 😔
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.
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.
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
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!
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.
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.
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!
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.
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!
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