Pancreas Damage, Exocrine Pancreatic Insufficiency (EPI) and Chronic Fatigue Syndrome (CFS)

ebethc

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The main clinical consequence of EPI is fat maldigestion and malabsorption, resulting in steatorrhoea. Undigested fat is excreted, resulting in stools that look oily or greasy.
good to know.. thanks.


EPI and gut problems go together. The gut produces most of your mast cells and when you have gut problems, you're likely to have increased mast cell issues without it being MCAS, MCAD. Antihistamines, mast cell stabilisers (cromolyn sodium, ketotifen) and maybe a DAO supplement can help, as long as your system doesn't see them as an antigen too.
doesn't your body need histamine to produce stomach acid? I have low stomach acid, and discovering betaine hcl has been a huge help.. however, combined w my MCAS problems, there seems to be some dysfunction w histamine in my body....
 

kangaSue

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Celiac artery stenosis is one cause of EPI that is often overlooked. The biggest cause of this stenosis in a younger population is Median Arcuate Ligament Syndrome however this condition also causes Chronic Mesenteric Ischemia (CMI) in around 90% of cases and CMI can cause similar fat maldigestion, malabsorption and steatorrhoea as found in EPI. Pancreas enzyme levels are usually normal or maybe slightly elevated with CMI though.

CMI can be due to a microvascular bowel blood flow deficiency as a result of having autonomic dysfunction (excessive dysfunction of a single blood flow regulator can precipitate intestinal ischemia) but little is written about this. This can also be a mimic for Chronic Pancreatitis.
I broke 10 years ago 12th thoracic vertebra without spinal cord injury and still no compression of spinal cord or nerves there but scoliosis, chronic back pain and dysbalance of muscles. I wonder if this have something to do with my EPI and even a Arcuate Ligament Syndrome.
[Wiki: Diaphragmatic crura join near the 12th thoracic vertebra]
 

kangaSue

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I broke 10 years ago 12th thoracic vertebra without spinal cord injury and still no compression of spinal cord or nerves there but scoliosis, chronic back pain and dysbalance of muscles. I wonder if this have something to do with my EPI and even a Arcuate Ligament Syndrome.
[Wiki: Diaphragmatic crura join near the 12th thoracic vertebra]
MALS could be a distinct possibility then. Most of the literature states MALS to have severe chronic, recurrent abdominal pain as the main symptom but this can be just felt as some mild discomfort after eating or following exercise if the celiac artery compression is less than 70% or so.
https://www.uptodate.com/contents/celiac-artery-compression-syndrome
 

BeADocToGoTo1

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This is a good article about EPI;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301368/
Practical guide to exocrine pancreatic insufficiency – Breaking the myths
Hi kangaSue,

Thanks. This is a good article with introductory information on EPI, some of the causes and available standard tests. Dr. Steven Freedman is in fact one of the doctors I reached out to since he is so experienced and deep in the field, in the hope that everything I learned the hard way can help him and his practice in any way; both from the patient point of view and further research. From a sufferer's perspective there was just not enough practical information, with actionable steps, looking at the overall picture health and improving functionality for those with EPI.
 

BeADocToGoTo1

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I broke 10 years ago 12th thoracic vertebra without spinal cord injury and still no compression of spinal cord or nerves there but scoliosis, chronic back pain and dysbalance of muscles. I wonder if this have something to do with my EPI and even a Arcuate Ligament Syndrome.
[Wiki: Diaphragmatic crura join near the 12th thoracic vertebra]
Hi hmlog,

You have been through a lot! It would not surprise me if there is a link with your break. Not enough micro-nutrients and your body starts cannibalizing from bone, muscle and tissue. Bones become weaker and more brittle. I spent many hours in a spinal specialist's office thinking that all my back pain, back seizing up and paresthesia symptoms were caused by my spine. In hindsight, I had to ask "why?" a few more times. It again came down to malabsorption and malnutrition causing metabolism issues and subsequent spine, nerve and bone issues. Physiotherapy did not help one bit until my nutrient deficiencies were resolved, and I was on PERT. In fact, my physiotherapist stopped treatment due to the heart, blood pressure, pain and numbness symptoms being exarcerbated by it. A bit too coincidental to me that a lot of the pain I had over the years also started from the region where the pancreas resides. A message from the body?

But no doctor will ever think of the pancreas when you walk in with those issues, or a broken vertebra in your case.
 

BeADocToGoTo1

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thanks!!
do patients w EPI have undigested food in their stools? I RARELY have this problem
Hi ebethc,

It can vary tremendously. Most people, like me, had no idea that there was something not quite normal. Doctors usually do not ask for these important details either. Too unsavory or awkward I guess. At my worst I did see some undigested bits, but certainly not all the time. The hints from my body were first having to go more frequently, then softer, then yellower, having to wipe more, then stickier, then smellier. But it was super gradual over many years, and with spurts. It is often undigested fat that gets noticed first, and that gets the most attention and is more easily noticable. Undigested protein or carbs are less noticable in the stool. The bristol stool chart is one to check.
 

BeADocToGoTo1

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I found this study interesting, and it was the tipping point for me to jump into keto.... I've been experimenting w low carb diets w varying success for a long time... in the 90s I tried atkins, which cleared my brain fog and helped w pain BUT I couldn't digest all the meat...In the past few years, I discovered that i need betaine hcl to digest meat, any portion that's more than a snack... a full-fledged Paleo diet is too much coconut oil for me, and so on... I just started keto at the beginning of the year and so far I like it BUT it's early and I'm not sure if the histamine reactions I've been having are b/c of the diet or something else... still experimenting... Check out this study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4709725/
Hi ebethc,

The key is less sugar as that is a huge culprit of many of today's modern ailments. it was a major culprit of pancreas damage in my case as well. And that was with me thinking I was eating a low-sugar, healthy diet!! We get just too much through all the various forms, often hidden. Many people no longer know what is healthy or low-sugar food anymore. Marketing has been extremely succesful in blinding us. Cereals, juices, most wheat products, low fat milk, restaurant food, etc. Wheat is often stripped of its nutrients for shelf-life, and thus you are left with the starch (=glucose=sugar), and it is in almost everything packaged. Not sure if you live in the US, but the amounts of sugar used in packaged goods and restaurants is utterly shocking. So "keto" is often loosely used to mean less sugar/carbs. Paleo or primal does not mean eat more meat, a common misconception. Extreme coconut oil is not good, extreme meat is not good, extreme anything is not good. Check out Mark Sisson's websites like Primal Blueprint or marksdailyapple if you would like great info on food. He has written some great books, but much of the info is free on his websites and podcasts. Well worth checking out.

A little side note on keto. If you are suddenly using more of your own fat as fuel, as a 'fat-burner' instead of a 'sugar-burner' it is possible that toxins that were stored in your fat can get into the bloodstream and need to be filtered out by your body again. A sudden large release of these toxins can also cause unpleasant effects.
 
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Paralee

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Hi ebethc,

It can vary tremendously. Most people, like me, had no idea that there was something not quite normal. Doctors usually do not ask for these important details either. Too unsavory or awkward I guess. At my worst I did see some undigested bits, but certainly not all the time. The hints from my body were first having to go more frequently, then softer, then yellower, having to wipe more, then stickier, then smellier. But it was super gradual over many years, and with spurts. It is often undigested fat that gets noticed first, and that gets the most attention and is more easily noticable. Undigested protein or carbs are less noticable in the stool. The bristol stool chart is one to check.
This is interesting, @BeADocToGoTo1 , I experience this occasionally and sometimes it is followed by sand. I was assuming it was oxalates. I think (actually been thinking) I need my pancreas checked out.
Thanks for that info....and everyone's.
Paralee
I really need to think of everything before I post. I also found out I have a compression fracture of unknown age in/close to the lower back ...maybe thoracic area? May be worth checking out.
Not sure if thoracic is right....
.
 

kangaSue

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Is it possible to have exocrine pancreatic insufficiency and be chronically constipated at the same time?
It can be the case if you have always had an issue with constipation. It could be that constipation and malabsorption/maldigestion of fats are actually related to autonomic dysfunction too though, and not EPI as such. That doesn't mean to say that you can't have EPI as well and that can be why it is hard to figure out what is what.

In some people who have been using pancreatic enzyme replacement therapy for EPI, it sometimes triggers side effects such as constipation, nausea, dizziness, bloating, and abdominal pain.
 

PatJ

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Is it possible to have exocrine pancreatic insufficiency and be chronically constipated at the same time?
It is if your liver isn't producing enough bile. Bile promotes paristalsis which moves feces through the colon. Some people with chronic constipation find help from ox bile supplements, although they shouldn't be taken long term because the body may become dependent and reduce the natural output of bile in response to the supplement.
 

kangaSue

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s it possible to have exocrine pancreatic insufficiency and be chronically constipated at the same time?
Another thought here on chronic constipation and autonomic dysfunction, the ileocecal valve may not be working effectively too and ileocecal valve massage can be a simple beneficial therapy to try to keep the bowels moving.
 

mariovitali

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It is if your liver isn't producing enough bile. Bile promotes paristalsis which moves feces through the colon. Some people with chronic constipation find help from ox bile supplements, although they shouldn't be taken long term because the body may become dependent and reduce the natural output of bile in response to the supplement.
I second that.
 

BeADocToGoTo1

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Is it possible to have exocrine pancreatic insufficiency and be chronically constipated at the same time?
Have you tried magnesium? With EPI, since it can impact any metabolic pathway and your digestion system, it is possible. Magnesium deficiency will certainly have an impact. Are you drinking healthy water, i.e. not chlorinated, not fluoridated, and not mineral poor (e.g. R.O without essential minerals added back in = demineralized)?
 
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Inara

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Have you tried magnesium? With EPI, since it can impact any metabolic pathway and your digestion system, it is possible. Magnesium deficiency will certainly have an impact. Are you drinking healthy water, i.e. not chlorinated, not fluoridated, and not mineral poor (e.g. R.O without essential minerals added back in = demineralized)?
Do you think Mg deficiency could be a consequence of EPI?
 

BeADocToGoTo1

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Do you think Mg deficiency could be a consequence of EPI?
Hi Inara,

Absolutely it can be. Of course there are many other possible causes for magnesium deficiency, such as poor food, unhealthy water, SIBO, Candida, IBS, Celiac's, low stomach acid, and excess sugar intake, to name a few. Anything that impacts the absorption of nutrients can have an impact.

It is tough, because the normal blood tests are not very helpful in determining if you are deficient, as the body will beg, borrow and steal magnesium from anywhere, including your own bones, to keep the heart ticking, and to keep the lights on.

It is a vicious cycle when it comes to the pancreas and EPI. Magnesium is needed by the pancreas and required in the synthesis of pancreatic enzymes. It is also needed in stomach acid production, which is another important element in breaking down food. The pancreas is needed in the breaking down of food into useful nutrients, and that includes magnesium.
 
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Inara

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Thank you @BeADocToGoTo1, I have Mg deficiency and I supplement it therefore (a lot), but I don't get the levels to where they should be. Wouldn't that speak against EPI being the cause of the deficiency?

I find this thread interesting, because at the very beginning I developed problems with blood sugar in the sense that after eating the glucose levels were lower than before, which brought problems with it, obviously. This was also shown via a glucose tolerance test. This resolved after some time, and then by chance very high lipase and amylase levels were found, but a MRI (weeks later, when the levels were nearly normal again) showed nothing. During that time the stool was "uncomfortable" :) several times pancreatic elastase in the stool was lowish (but some months ago it was normal - can this be an error by the lab, or is elastase higher in the morning and lower in the evening?), and there's nothing more normal for me than to have undigested food in the stool and a high stool frequency, plus severe nausea and heartburn if I eat "too much", so most times I only eat small portions. But I have problems with gaining/holding weight, not underweight.

I tried some digestive enzymes in the past, but never Kreon, and they didn't help. So I thought all these results are irrelevant, the pancreas is fine and it's the gallbladder or whatever (which made problems in the past, too).

So after reading this thread and realizing Kreon is prescription-free here, I thought to give it a try. And indeed, yesterday was the first time since years without nausea and heartburn after eating. :angel: I only had minor heartburn which could be the gallbladder after all. And my sleep wasn't affected.

I speculate about a connection to a calcium channel that could be dysfunctional in me (due to a mutation; I am trying to find a lab that can test this channel, but it's not easy), called Inositol 1,4,5-Trisphosphate receptor (IP3R; in my case, the IP3R type 3 is affected). IP3R3 is expressed in every cell, but, amongst others, it's the predominant isoform in pancreatic acinar cells and cholangiocytes, and it was connected to pancreatitis, cholangiocitis, type 1 diabetes and liver diseases.
 

BeADocToGoTo1

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Hi Inara,

I recognize all those symptoms and that it fluctuates over time. I also had hypoglycemic episodes
for a while to the point of nearly fainting, and nausea and acid reflux where long term symptoms for me too. Elastase levels fluctuated wildly with me too, and do indeed change during the day. I just stayed consistent with having all my tests done after a 12 hour fast (normal daily thing for me) first thing in the morning. If elastase is even a few points lower than normal, that is a red flag.

The elevated amylase and lipase blood tests could have pointed to an inflammation or obstructed duct for a brief period where those enzymes were spilling into the bloodstream. Your body is sending you all kinds of signals. taking enzymes is just one of many actions. There are many good, related blood, urine and stool tests that helped me. When you are not breaking down food properly it can impact your calcium-magnesium balances, microbiome balance, metabolic pathways, and it can cause auto-immune reactions and food sensitivities. It is important to remove insults to the body, in addition to adding those enzymes to support the digestion. It can take a while for things to turn around and deficiencies to rebalance after you make the changes.

Genetic testing is interesting but might not be that useful in providing actionable steps.

Be kind to your pancreas. :)

One other question, have you had your thyroid tested properly before? Most standard doctors still do not do this properly.
 
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