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Poor pancreatic function

Messages
94
Location
NZ
Just a short update. I have an MRCP (magnetic imaging with contrast) and ultrasound. I've also seen a specialist in the field.

The bottom line is that imaging looks fine however there was quite a bit of concern over the low elastase. He has basically said my pancreas is not functioning as it should but the cause is unknown. The knock on effect is ongoing digestion issues. He has upped my enzymes intake (most research suggested 30,000 UI min (link)).

I basically need to monitor symptoms and if a bout of extreme pain occurs, go to the ER for amylase and lipase test which only peak hours after an attack. The main concern is chronic pancreatitis which is highly correlated with low elastase. Here hoping its not that!
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Hi Gary,

I too have low elastace but I don't have any pain. I hadn't realized that this was a serious problem. FWIW .. I just added it to my list of diagnosises and didn't think about it. :rolleyes:

I have a couple of questions for you ... Where you tested for celiac disease ? Pancreatic problems are common in celiac disease.

And can you track your pain to anything you're eating ?

Celiac disease, gall bladder problems, eating certain foods, esp meats or too many cooked fats, and h pylori have caused me extreme digestive pain.

Trapped gas is a common problem too but Gas-x takes care of that so that ones easy to figure out. BTW. Ginger will help with trapped gas too. Sometimes one works better than the other tho.

FWIW ... My gall bladder pain came on in waves and was so severe I had to take Donnatal Elixir. After a few days of donnatal and a bland diet the pains stopped but then restarted at random. I had my gall bladder removed due to low function test and pain. They found sludge but no stones.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I forgot to ask. Are you taking Creon still ? I was prescribed the delayed release 24000 but after a few weeks decided that it was too much for me. It made me nauseas and it felt like my digestive tract was being shredded so I stopped taking it.

I just tried it again tho because my tests say I need it. This time I broke it up into 1/3 capsule and put it into another capsule and took it once in the am for a few days. It felt great for a few days and then I started feeling funny / nauseas again.

I was wondering if it could be the delayed release part of this that I'm reacting too. Maybe my body only wants it there if there's food for it to work on ... tc ... x
 
Messages
94
Location
NZ
Just a short update. I changed my creon supply, I'm now taking a single 40,000 cap with meals (in the past I was taking 40,000 plus but in single 10,000 caps). Its really helping with bloating and pancreatic pain. From researching the topic, I found enzymes are very vulnerable to temperature and become inactive. I believe the past supplies (including the range of Rx and non Rx versions) have not been stronge enough or have been inactive. This recent batch is better and clearly shows I need to take something reasonable strong.

My next step is to replace creon with PANCREAZE or VIOKACE, just need to track them down in Australia.

I also have an EUS scheduled (http://en.wikipedia.org/wiki/Endoscopic_ultrasound) next week. It will costs a little bit but from all the research I've done (including consulting with a specialist) the type of pain I have had and the insufficiency mean I need to rule out chronic pancreatitis. The specialist was happy to wait and see (with the instruction to go the ER if an attack occurs), however given time to think about it, I want to be proactive and an EUS carries little risk.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
From reviewing online information, poor pancreatic elastase is actually quite a bad sign.

Pancreatic insufficiency can be of primary or secondary origin. I also tested low for elastase levels. Based on this, my gastroenterologist ordered an abdominal and pelvic CT scan. Nothing nasty showed up. So, in my case, it is clearly of secondary origin. My recommendation for further testing, if they find nothing on the ultrasound, is Metametrix GI Effects Complete Profile and Genova Intestinal Permeability Assessment. Basically, any kind of gut dysfunction is able to cause secondary pancreatic insuficiency.
 
Messages
94
Location
NZ
Hey, thanks for that. The specialist I saw only mentioned pancreatic dysfunction (acute or chronic) as the cause of insufficiency. Good to hear it can be secondary. I'm seeing my GP tomorrow, depending on the outcome, would you be cool to chat about gut issues based on your experiences?
 
Messages
1
Hey, thanks for that. The specialist I saw only mentioned pancreatic dysfunction (acute or chronic) as the cause of insufficiency. Good to hear it can be secondary. I'm seeing my GP tomorrow, depending on the outcome, would you be cool to chat about gut issues based on your experiences?
Gary1001 what was your elastase level and did you ever discover what caused it?
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hi All,

I'm looking for a recommendation for Pancreatic Enzyme supplements (such as). Based on pancreatic elastase and faecal fat tests, I have poor pancreatic function and are looking to assist with a cost effective supplement. I currently take creon however it has known to be toxic in the long term plus it hasn't really help a great deal.

Any experiences / comments?

I take Creon, never really researched it, seems to help me have less diarrhea. I do detox everyday, so perhaps that will help with the Toxicity? Never heard that before.

GG
 
Messages
8
Just a short update. I changed my creon supply, I'm now taking a single 40,000 cap with meals (in the past I was taking 40,000 plus but in single 10,000 caps). Its really helping with bloating and pancreatic pain. From researching the topic, I found enzymes are very vulnerable to temperature and become inactive. I believe the past supplies (including the range of Rx and non Rx versions) have not been stronge enough or have been inactive. This recent batch is better and clearly shows I need to take something reasonable strong.

My next step is to replace creon with PANCREAZE or VIOKACE, just need to track them down in Australia.

I also have an EUS scheduled (http://en.wikipedia.org/wiki/Endoscopic_ultrasound) next week. It will costs a little bit but from all the research I've done (including consulting with a specialist) the type of pain I have had and the insufficiency mean I need to rule out chronic pancreatitis. The specialist was happy to wait and see (with the instruction to go the ER if an attack occurs), however given time to think about it, I want to be proactive and an EUS carries little risk.
Hello
Can you say what happened with EUS please ?

I have the same problem.
- MRI and MRCP looks fine (both with contrast agent)
- CT with contrast agent looks fine
- Ultrasound looks fine
- Gatroscopy only mild gastritis c with bile reflux
- Faecal calprotectin is good
- No glucose, fructose and lactose intolerance
- Mild histamine intolerance (doc bloodtest: DAO)
- Fecal elastase 6 months ago over 500. 1 months ago under 100 (stool was unformed and more liquid, not like the first. First was hard)

Everything done this year.
3 years ago I had a colonoscopy and the first gastroscopy. Colonoscopy looked fine. Gastroscopy showed mild gastritis c.
 

BeADocToGoTo1

Senior Member
Messages
536
I just wrote a post about the link between pancreas damage, exocrine pancreatic insufficiency (EPI) and CFS. There is just too little practical information for sufferers, with doctors that are very specialized in their silos and often do not look at the overall picture, nor have the available time to do a deep dive into the root cause. I use about 72,000 to 108,000 per meal of Creon and half that for a snack, depending on the portion size and fat content. I stick with prescription because then at least you know there is at least the amount of enzymes in it as advertised (if not too old or too exposed to light and oxygen). But pancreatic enzymes is only part of the picture as I found out the hard way.

https://forums.phoenixrising.me/ind...y-epi-and-chronic-fatigue-syndrome-cfs.62997/