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

[BeADocToGoTo1]

Since there are just a few very old posts linking pancreas issues with chronic fatigue syndrome, I write this in the hope that what I have learnt over the last 4 years might help others with similar life changing issues. It is an avenue worth looking into in your quest to feel better. It helped me from being bedridden with no hope in sight to a functioning human being again.

EPI is just one possible path to CFS, but in part due to the difficulty in diagnosing it, flying under the radar of most doctors and sufferers. I really think that there are many people who go through years of initially slow declines, misery and even an early grave either by their body giving out or suicide, without ever getting their exocrine pancreas function diagnosed as a possible culprit.

Like many here on PhoenixRising, my situation had stumped a few dozen doctors with varying specialties after countless blood, urine, and stool tests, ECGs, Ultrasounds, X-rays, MRIs, and CT scans. Four doctors mentioned specifically that my pancreas was absolutely fine. One stated that my issues were not pathological, and another even suggested looking into Prozac and a psychiatrist! It has been a journey of six years of unhealth, five years without knowing a pain-free day, four years of non-stop malaise, over three years of being homebound, where frankly life itself was torture. For those of you here suffering from chronic fatigue, pain or illness, you have likely suffered far, far worse.

Pancreas Background

There are 2 major areas that this little organ, that I did not even know existed before my life ground to a halt, is crucial for:

1. Endocrine. The side which handles the management of blood sugar levels in the body. It is very much in the news due to the massive (pre-) diabetes rates.

2. Exocrine: The rarely mentioned, but just as important side which produces the enzymes necessary to break down proteins, fats and carbs into usable nutrients. Without these we would slowly starve to death. Nutrient deficiencies can lead to metabolism issues, mitochondrial dysfunction and chronic fatigue syndrome.

Steps I Took to Get My Life Back

Since I wanted to find out what caused my health breakdown and how I could get better, I kept track of how I felt most days, including any symptoms, medical tests, food and supplementation experimentation, bodily insult lowering actions, as well as any interesting bits of information I gathered during my research.

Just a few examples of symptoms that were resolved in my case: malabsorption, nutrient deficiencies, heart arrhythmia and premature ventricular contractions, asthma-like breathing issues, pre-diabetes, hypoglycemia, low testosterone, sleep disorders, neurotransmitter issues, paresthesia, silent reflux, small intestinal bacterial and Candida yeast overgrowth, coordination issues, eyesight issues, brain fog, memory, temporary stuttering and dyslexia issues, many layers and areas of constant pain, microbiome dysbiosis, easy bruising, slow wound and soft tissue healing, debilitating weakness and fatigue, secondary mitochondrial dysfunction, triglycerides, HDL, homocysteine, and HbA1C levels.

Much of what I found was very surprising to me, as I thought I was always living a very clean and healthy life. A large part of the healing process was removing as many bodily insults, many I was painfully unaware of before all this.

 

[hmlog]

I was diagnosed with Exocrine Pancreatic Insufficiency last year and have chronic fatigue + osteoporosis.
I had everything. Endoscopic ultrasound of pancreas, MRI, MRCP, CT, Ultrasound, gastroscopy, colonoscopy, Capsule endoscopy of small instetines, blood tests...
No signs of damage of Pancreas and no answers why I have EPI and Osteoporosis.
And nothing helps. So since doc diagnosed EPI I take Kreon.
Pain is there, chronic fatigue is there and osteoporosis too.

Pancreas is one of these organs which never heal if it is damaged.
I have discussion with people with pancreas problems and everybody have the same experience. It never heals. Probably the pain go away for few months till years but it came back stronger.

 

[BeADocToGoTo1]

Hi hmlog.

Sorry to hear about your struggles. Creon is only one piece of the puzzle! My doctors also told me that acinar cell regeneration is not possible, although I have read that it depends on the amount of damage that has been done. I have less than 10% left of my pancreas but have been able to become a functioning human again. I had osteopenia by age 40 due to exocrine pancreatic insufficiency, which was just one of hundreds of downstream symptoms. I discovered that there is almost no practical help that looks at the overall picture for a variety of reasons. I think there are millions of people that have EPI or pre-EPI without even knowing that is the cause of many chronic symptoms. Lack of nutrients, the direct result of EPI, causes a myriad of issues as metabolic pathways stop functioning properly. Your body will beg, borrow and steal essential minerals (hence osteopenia, osteoperosis), cofactors, and amino acids (hence muscle loss) to keep the lights on. To turn that ship around requires a number of steps, of which pancreatic enzymes like Creon is only one of the steps required.

 

[hmlog]

You wrote that you had a scan which discovered that less than 10% left of your pancreas. Which diagnostic imaging procedure was it ?
I mean if 10% left and rest of pancreas is atrophied it would be seen on MRI's, MRCP and probably even CT (MRI, MRCP and CT with contrast agent) and Ultrasound. Especially with endoscopic ultrasound.

 

[BeADocToGoTo1]

You wrote that you had a scan which discovered that less than 10% left of your pancreas. Which diagnostic imaging procedure was it ?
I mean if 10% left and rest of pancreas is atrophied it would be seen on MRI's, MRCP and probably even CT (MRI, MRCP and CT with contrast agent) and Ultrasound. Especially with endoscopic ultrasound.

Hi hmlog,

In hindsight, the CT scan at the emergency room did not even show much of a pancreas left, but at the time they were not looking for that based on my symptoms. It was much later, after I was quite adamant with my doctor that I wanted an MRI with MRCP and contrast that it confirmed the issue. That MRCP is very good. The problem is that for many the damage is not as severe as to show up on a scan like mine did, but the subsequent effects of nutrient deficiencies is very serious.

 

[ebethc]

@BeADocToGoTo1

I am very curious to know more about EPI, If you can answer any of these questions, I would be grateful... thanks.

Can you just tell me how it's diagnosed? I've never had pancreas tested, beyond basic bloodwork (glucose, etc.)

2nd, Wobenzym is one of the few things that helps me, which was my first clue re pancreas... I can't afford it now, but I'm curious to know if it's safe to take Wobenzym long term (don't worry...I know you're not a doc, but I can't find info on this and would love to know what you think..)

3rd, do you think EPI is linked to MCAS in any way? my histamine issues are driving me nuts this week and I can't figure it out... I just started a keto diet at the beginning of the year, and take betaine hcl for low stomach acid.... for the first time, joint pain and stiffness were GONE... I woke up actually feeling rested... but then suddenly the histamine problems came on (itchy swollen throat, tongue, eyes.. soreness, fatigue), likely b/c there's a little air pollution, but maybe something I'm eating, too.... still trying to work that out..

Last - is a Keto diet good for this? seems like it would be..

 

[ScottTriGuy]

@BeADocToGoTo1

You have a unique recovery story. I will be soon launching my podcast (Remedies - Medical Error Interviews - Secrets, Stories & Solutions) and have been interviewing folks with stories that parallels your own (patient sick - docs don't know why, then often default to psychosomatic - patient does own research, finds diagnosis, recovers).

If you'd like to chat more about what it would involve, please PM me.

cheers,
Scott

 

[hmlog]

@BeADocToGoTo1

I am very curious to know more about EPI, If you can answer any of these questions, I would be grateful... thanks.

Can you just tell me how it's diagnosed? I've never had pancreas tested, beyond basic bloodwork (glucose, etc.)

2nd, Wobenzym is one of the few things that helps me, which was my first clue re pancreas... I can't afford it now, but I'm curious to know if it's safe to take Wobenzym long term (don't worry...I know you're not a doc, but I can't find info on this and would love to know what you think..)

3rd, do you think EPI is linked to MCAS in any way? my histamine issues are driving me nuts this week and I can't figure it out... I just started a keto diet at the beginning of the year, and take betaine hcl for low stomach acid.... for the first time, joint pain and stiffness were GONE... I woke up actually feeling rested... but then suddenly the histamine problems came on (itchy swollen throat, tongue, eyes.. soreness, fatigue), likely b/c there's a little air pollution, but maybe something I'm eating, too.... still trying to work that out..

Last - is a Keto diet good for this? seems like it would be..

I met many EPI-patients who have histamine intolerance. I was tested with a mild histamine tolerance.

I suspect it is due to insufficient digestion because of the pancreas and toxic substances from undigested food go into blood and/ or make reactions with tissue (inflammation) immune system. Many EPI-patients habe allergies, I am one of them.

I had for 2 years till beginning of 2018 a hyposensitization against pollen. Shortly after the last injection the problems with my pancreas came really through - till today.

However, I want to test my blood for IgG-Subclasses, Antinuclear antibodies, Immunoelectrophoresis, Serum protein electrophoresis, Subpopulation of t lymphocytes and bone metabolism.

Btw, I met EPI-patients who had low testosterone but my testosterone is good.

 

[Aurelius]

But wouldn't real EPI be diagnosed quite quickly due to several vitamin deficiencies + an elastase test (I had such a test in a combined gut package, so maybe that test alone would just be around 10 bucks - meaning it is easily available)?

 

[hmlog]

But wouldn't real EPI be diagnosed quite quickly due to several vitamin deficiencies + an elastase test (I had such a test in a combined gut package, so maybe that test alone would just be around 10 bucks - meaning it is easily available)?

It's easy to diagnose EPI but it's not always easy to diagnose why someone has EPI. I am one of them.

Nobody knows why I have it.

I have tested Vitamin D3 in my blood few times. It was good. But I always take Vitamin D3 with Vitamin K2. Probably without taking it I would have deficiencies of these Vitamins.

Very important Vitamins (if someone has EPI) are Vitamin A, E, D3, K1+2. These are fat-soluble vitamins. Body can take these vitamins only if Pancreas works.

And it is not cheap to test fat-soluble vitamins. So not every doc do this as routine test for EPI.
It's cheaper to diagnose EPI with Elastase stool test.

However, to diagnose EPI is easy. To know why someone have it and to treat it is another question.

 

[PatJ]

@mariovitali you may be interested in this topic due to your research into the liver and ME/CFS. Liver problems can lead to pancreas problems.

 

[BeADocToGoTo1]

Hi hmlog,

One more thought is that SIBO and Candida were subsequent effects in my case and required fixing to help resolve many symptoms as well. Not sure whether you have looked into that, as they also cause additional nutrient deficiencies and hinder healing. Important is to lower the insults to the body as much as is possible, as well as provide it the extra nutrients it is lacking. Depending on how long EPI has been going on, you might be so deficient in a particular cofactor that just eating super healthily and with pancreatic enzymes is not going to be enough to resolve the deficiencies. It takes a while for metabolic pathways to start working better, and symptoms like pain and depression were some of the last ones to get better.

 

[BeADocToGoTo1]

@BeADocToGoTo1

I am very curious to know more about EPI,If you can answer any of these questions, I would be grateful... thanks.

Can you just tell me how it's diagnosed? I've never had pancreas tested, beyond basic bloodwork (glucose, etc.)

Hi ebethc,

Sorry to hear that you are suffering both financially and healthwise. The diagnosis is often done too late and through a few different tests. They are not all perfect either, so often it is a few done to come up with an indication. Some of the standard ones are the MRI MRCP, stool tests for elastase, chymotrypsin or 24-72 hour fecal lipid (tests fat malabsorption), 13C breath test. Sadly, the amylase or protease standard blood test that most doctors do are utterly useless for diagnosing EPI.

@BeADocToGoTo1
2nd, Wobenzym is one of the few things that helps me, which was my first clue re pancreas... I can't afford it now, but I'm curious to know if it's safe to take Wobenzym long term (don't worry...I know you're not a doc, but I can't find info on this and would love to know what you think..)

There are many over the counter enzyme pills, but it is tough to know how potent they are, what the quality of the ingredients are and most importantly how consistent they are. And yes, they are expensive. Perhaps ask your doctor for a prescription for pancrelipase (e.g. creon or other brands), as that might be cheaper than over the counter. They are essentially enzymes from a pig's pancreas in tightly controlled strengths. You can try to see whether it improves your symptoms and your stool quality (another big indicator of EPI).

@BeADocToGoTo1
3rd, do you think EPI is linked to MCAS in any way? my histamine issues are driving me nuts this week and I can't figure it out... I just started a keto diet at the beginning of the year, and take betaine hcl for low stomach acid.... for the first time, joint pain and stiffness were GONE... I woke up actually feeling rested... but then suddenly the histamine problems came on (itchy swollen throat, tongue, eyes.. soreness, fatigue), likely b/c there's a little air pollution, but maybe something I'm eating, too.... still trying to work that out..

I don't know the answer to that. But, it is incredible how nutrient deficiencies impact the body. Logical really and biochemistry in practice. Even one deficiency can have a cascading effect. It is also important to remove as many insults to the body as you can, to lower the amount of work the body needs to do to process toxins, excess sugar. Your body tries really hard to get back in balance, but it can get overwhelmed with too many hits. Simple thing you can do is get a HEPA air filter, don't drink chlorinated/fluoridated tap water, remove bad and non-organic food and drinks and excess sugar from the diet, etc. I had no idea how bad the modern Western food and water quality was until it was much too late, and that was when I always though I was eating healthily.

@BeADocToGoTo1
Last - is a Keto diet good for this? seems like it would be..

This is one that for someone suffering from EPI and nutrient deficiencies you have to be very careful with. Two people in my surroundings ended up in hospital due to ketoacidosis by jumping on the hype blindly. People often go too extreme. When you eat your food in an 8-12 hour window each day, and you eat a primal diet you will become more fat adapted and produce ketones naturally. Removing excess sugar, often hidden in packaged products, juices, wheat fillers and a dozen different innocent sounding names is a good thing. If you get hangry, it is a signal that you are too dependent on sugar and cannot efficiently use your own fat storage for fuel. No need to go extreme and I avoid any store bought ketones (messed me up and are often include chemicals and excessive sugar).

 

[BeADocToGoTo1]

But wouldn't real EPI be diagnosed quite quickly due to several vitamin deficiencies + an elastase test (I had such a test in a combined gut package, so maybe that test alone would just be around 10 bucks - meaning it is easily available)?

Sadly, it is not often on a doctor's radar. You might suffer from tiredness or depression. You might have numbness in your fingers or your heart is acting strangely. Not once will a doctor think that it is related to the pancreas. My body was giving signals years before, but no doctor ever picked up on it until it was much too late. Even in the ER they did not even consider the pancreas. Often times we take vitamin pills or fortified food which masks the underlying issue for a while. It can go in spurts and cycles so even the sufferer will wave it off as a symptom of getting old, or too much work, or too much travel etc. Once the suspicion is there, there are a few tests that can be done like the elastase you mentioned. However, even that is not all that accurate. At my absolute worst it was just a few points under the threshold, which would not have alarmed most doctors. It was not until a year later that it dropped further into the 30s, but fluctuates wildly. Many nutrient deficiencies are sadly not tested for, or are done with blood tests that do not indicate much (magnesium and CoQ10 are good examples of this).

 

[BeADocToGoTo1]

It's easy to diagnose EPI but it's not always easy to diagnose why someone has EPI. I am one of them.

Nobody knows why I have it.

I have tested Vitamin D3 in my blood few times. It was good. But I always take Vitamin D3 with Vitamin K2. Probably without taking it I would have deficiencies of these Vitamins.

Very important Vitamins (if someone has EPI) are Vitamin A, E, D3, K1+2. These are fat-soluble vitamins. Body can take these vitamins only if Pancreas works.

And it is not cheap to test fat-soluble vitamins. So not every doc do this as routine test for EPI.
It's cheaper to diagnose EPI with Elastase stool test.

However, to diagnose EPI is easy. To know why someone have it and to treat it is another question.

Amazingly similar. "Idiopathic" they called it with me, which just means "we have no clue".

And the treatment is indeed the big issue. Even from doctors and pancreatic specialty institutes who you would think had more practical information about the steps to take to lower inflammation, pain and help the overall healing. Nope. If you are lucky they will spot EPI and write you a prescription for PERT pancreatic enzyme replacement therapy. And that is it. there were many steps I had to take to become functional again, most of which I had to figure out along the way.

One more thing to add to your important fat-soluble comment is CoQ10. It is fat soluble but often overlooked by doctors, especially gastroenterologists. However, this worked wonders for me. I did not have the necessary building blocks to produce enough myself, and my stores were so depleted it had impacted my breathing and heart. Crucial for our mitochondria!

 

[hmlog]

Hi hmlog,

One more thought is that SIBO and Candida were subsequent effects in my case and required fixing to help resolve many symptoms as well. Not sure whether you have looked into that, as they also cause additional nutrient deficiencies and hinder healing.

Yes was tested last year. I don't have SIBO and Candida.

 

[mariovitali]

@PatJ

Thank you for the mention. It is interesting to see at the problems created by EBI :

Many individuals with PEI will experience nutritional deficiencies, especially of fat soluble vitamins such as A, D, E, and K, since they are not taking in enough fats to help absorb these vitamins. PEI can also cause weight loss, because patients do not get enough calories from the food they eat. Weight loss is more common in those who have PEI in addition to a digestive disease, such as Crohn’s disease. In children, these factors can also result in a failure to thrive.

Link : https://www.badgut.org/information-centre/a-z-digestive-topics/pancreatic-exocrine-insufficiency/

@ScottTriGuy another pathway for A,D,E,K issues apart from Liver issues ??


Looking at some causes of PEI, i found chronic pancreatitis. I wonder what the cause of this could be.

 

[ebethc]

Some of the standard ones are the MRI MRCP, stool tests for elastase, chymotrypsin or 24-72 hour fecal lipid (tests fat malabsorption), 13C breath test. Sadly, the amylase or protease standard blood test that most doctors do are utterly useless for diagnosing EPI.

thanks!!

You can try to see whether it improves your symptoms and your stool quality (another big indicator of EPI).

do patients w EPI have undigested food in their stools? I RARELY have this problem

 

[ebethc]

This is one that for someone suffering from EPI and nutrient deficiencies you have to be very careful with. Two people in my surroundings ended up in hospital due to ketoacidosis by jumping on the hype blindly. People often go too extreme. When you eat your food in an 8-12 hour window each day, and you eat a primal diet you will become more fat adapted and produce ketones naturally. Removing excess sugar, often hidden in packaged products, juices, wheat fillers and a dozen different innocent sounding names is a good thing. If you get hangry, it is a signal that you are too dependent on sugar and cannot efficiently use your own fat storage for fuel. No need to go extreme and I avoid any store bought ketones (messed me up and are often include chemicals and excessive sugar).

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/

Go to:
16. Conclusion
The ketogenic diet has the potential to treat the neurodegenerative component of progressive MS on the basis of the following observations obtained from in vitro and in vivo studies,

1. Neurodegeneration is thought to underlie the pathogenesis of progressive MS.
2. Mitochondrial dysfunction may result in reduced ATP availability. This may promote axonal atrophy, leading to degeneration. There is evidence of mitochondrial dysfunction within “normal appearing” grey matter and mitochondrial function appears to correlate with axonal survival.
3. According to in vitro and animal studies, the ketogenic diet increases ATP production, promotes mitochondrial biogenesis, and bypasses dysfunctional steps within the mitochondrial bioenergetic process, increases antioxidant levels and reduces oxidative damage. Since an increase in ATP and overall improvement in mitochondrial functioning correlates with axonal survival, the ketogenic diet may offer a therapeutic benefit for the neurodegenerative component of MS.

 

[kangaSue]

It's easy to diagnose EPI but it's not always easy to diagnose why someone has EPI. I am one of them. Nobody knows why I have it.

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.

do patients w EPI have undigested food in their stools? I RARELY have this problem

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.

do you think EPI is linked to MCAS in any way?

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.

There are many over the counter enzyme pills, but it is tough to know how potent they are, what the quality of the ingredients are and most importantly how consistent they are.

The simple answer to that is that most of the otc supplements are way too low in lipase conten to be of much help for EPI and you need lipase in the strength that usually comes with prescription meds (Creon, Pancreaze, Pertzye, Ultresa, Zenpep (enteric coated), Viokace (non-enteric coated, should be taken with a PPI).