Tag: PERT

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Wide Range of Symptoms for EPI or Exocrine Pancreatic Insufficiency

EPI has such a wide range of possible symptoms due to nutrient deficiencies impacting all aspects of your body. This is one of the reasons exocrine pancreatic insufficiency (EPI) is so poorly understood, and often misdiagnosed or diagnosed much later than desired. It took me going to dozens of doctors and specialists, a tremendous amount of testing, and above all perserverance before I could even start the journey to improve my quality of life.

Do not give up!

Some doctors suggested going to a psychiatrist, as it was out of their experience to diagnose or treat the large list of symptoms. I even had four doctors tell me that my pancreas was fine mainly based on two standard blood tests. Important to note is that those two standard blood tests for amylase and lipase that doctors usually go for are utterly useless in determining exocrine pancreatic insufficiency (EPI). They are likely a cause of many missed diagnoses of pancreas damage. They might be helpful briefly during an acute pancreatic infection or duct blockage, when those enzymes spill over into the bloodstream. But, if you are not making enough of these pancreatic enzymes in the first place, they will not show up elevated in the blood.

Please do not give up and be your own advocate for your quality of health.

Good news

The good news is that many of the downstream symptoms that are due to nutrient deficiencies can be improved once a correct diagnosis is made and steps are taken to correct the nutrient imbalances.

List of my personal resolved issues:

Some examples of major symptoms that were resolved in my case, including many classic ME/CFS symptoms include:

  • Debilitating chronic weakness and fatigue
  • Post-exertional exhaustion, malaise, fatigue (PEM)
  • Many layers and types of chronic pain
  • Cardiovascular dysfunctions: heart arrhythmia and premature ventricular contractions
  • Breathing dysfunctions: asthma-like breathing issues, oxygen starved feeling
  • Neurological issues: delayed reactions, memory loss, abnormal sleep patterns, headaches, temporary dyslexia, temporary stuttering, brain fog, confusion, difficulty processing information, difficulty understanding conversations, paresthesia
  • Motor impairments, poor coordination, sudden clumsiness, spasms
  • Immune symptoms, non-stop flu-like malaise, difficulty healing, swollen glands
  • Gastrointestinal dysfunctions: malabsorption, nutrient deficiencies, microbiome dysbiosis, silent reflux, small intestinal bacterial and Candida yeast overgrowth
  • Pre-diabetes, hypoglycemia, triglycerides, HDL, homocysteine, and HbA1c levels
  • Low testosterone, sleep disorders, neurotransmitter issues
  • Slow wound and soft tissue healing, easy bruising
  • Sensitivities to light, noise, heat, cold, smell, taste, food
  • Blurry eyesight, night blindness
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Primal Pancreas: Pancreas Damage Survival Guide

There are many paths to ME/CFS, but whether the trigger for it is, for example, viral, bacterial, toxic overload, auto-immune, unknown, or pancreas damage as in my case, the results can be debilitating and life-altering.

Pancreas damage, especially EPI, malabsorption and its chronic nutritional deficiencies, is just one possible path to at least look into.

The steps I took to go from death’s door to a functioning human being again are transferable to anyone suffering from chronic ailments and ME/CFS, and not just those with pancreas damage, as they help the body in the overall re-balancing and healing process.

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, and perplexing dozens of doctors. Like many others, my situation had stumped a few dozen doctors with varying specialties after countless ECGs, ultrasounds, X-rays, MRIs, CT scans, blood, urine and stool tests spread over the years prior to the diagnosis. For those of you suffering from ME/CFS, chronic pain or illness, or any pancreatic damage you have likely suffered far worse.

But, I was too stubborn to accept that the remainder of my life would have devolved into being a prisoner of my bed or couch, dependent on my wife for everything to just survive in pain and malaise. Determined not to take doctors’ feedback and non-answers as gospel any longer, I was able to ask for the right medical tests to perform to finally uncover my pancreas damage, nutrient deficiencies, and microbiome dysbiosis. Four doctors had actually told me my pancreas was fine, even though it was so atrophied that I had less than 10% functionality left and I was pre-diabetic. This just shows you how pancreas damage is flying under the radar of most doctors until it is often far too late.

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 test trials, food and supplementation experimentation, bodily insult lowering actions, as well as any interesting bits of information I gathered during my research. Most available hours of energy I had in the last 4 years were spent in reading and researching my symptoms and possible ways to heal. The notes I kept throughout the years helped me to write this Primal Pancreas book. It is written it in a way that I wish had been available to me when my health first started to deteriorate, or after dozens of doctors still had no answers, or even after my official medical diagnosis.

This book includes actions to help heal the body, lower oxidative stress and inflammation, and lists of medical tests (some not commonly used like urine metabolites or comprehensive stool tests), food and supplements to consider.

If it can help even one person by shedding some light in order to help the healing process, or help a doctor with any of their patients, it was worth writing.

A. Toxopeus

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Metabolism, Metabolomics, Metabolic Pathways, Mitochondria

Due to chronic nutrient deficiencies, at some point my body’s standard metabolic pathways and enzymes were hindered from functioning properly, and my mitochondria had a tougher time generating energy, with all the subsequent health effects and years of ME/CFS symptoms. From deterioration, total breakdown, and back to turning my health around, my case was a good example of biochemistry in practice. Some important terms related to ME/CFS that are happily discussed more and more these days are:

● Metabolism: the chemical processes occurring within a living organism in order to maintain life

● Metabolic pathway: a series of interconnected chemical reactions that occur within a cell

● Metabolomics: the scientific study of metabolites present within an organism, cell, or tissue

● Mitochondria: Essential organelles in cells which are, simply put, the energy power plants of our cells. ATP (adenosine triphosphate) is the energy storage that they produce.

Our body is bombarded from all sides by the exposure to many toxins, unhealthy water, and the daily intake of excessive sugar, processed carbs, herbicides, pesticides, preservatives, chemicals, industrialized oils, antibiotics, and often highly processed and nutrient poor food. Add to this any issues with breaking down food into the nutrients we need and absorbing them properly, for example, through EPI or microbiome dysbiosis, and it is a recipe for metabolic and mitochondrial dysfunction. The body works hard to stay in homeostasis, filtering toxins and utilizing our amazing anti-oxidant system, and it can take a while to get to a diseased state. However, over time and with continued hits to the body, this damage spiral increases and vicious cycles ensue. Further nutritional deficiencies, microbiome imbalances, oxidative stress, mitochondrial and metabolic dysfunctions, and a subsequent myriad of illness symptoms can result.

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Pancreas, the Canary in the Modern Food Supply

The pancreas is the proverbial canary in the coal mine of today’s modern food supply and eating habits. It sometimes takes decades before the damage starts to really show, as it is often a slow and stealthy decline. Some of the damage can initially be masked through the intake of multi-vitamins and other supplements, fortification of foods, and even eating larger and more frequent quantities of food.

Roughly a third of the population in the United States now has pre-diabetes or diabetes. There are studies that mention between twenty-five and fifty percent of those with diabetes also suffer from exocrine pancreatic damage.

This could potentially mean millions of, mostly undiagnosed, people that are nutrient deficient, and suffering a wide range of chronic symptoms without knowing the underlying cause.

The focus has mostly been on the endocrine side of the pancreas with diabetes, but with these messages I would like to shine more light on to the lesser known, and often misdiagnosed, exocrine area of the pancreas.

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Pancreas Damage and Exocrine Pancreatic Insufficiency (EPI)

There are 2 major areas that this little and sensitive organ, that I did not even know existed before my life had 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 starve to death.

Exocrine pancreatic insufficiency (EPI) is a condition which occurs when the acinar cells in the pancreas are damaged or the organ is unable to deliver pancreatic juice in sufficient quantities, and at the right time, into the small intestine. The main enzymes the pancreas produces are:

● Lipase: enzymes that break down fats

● Protease: enzymes that break down proteins

● Amylase: enzymes that break down carbohydrates

EPI causes maldigestion and malabsorption of food. This causes microbiome dysbiosis, malnutrition and nutrient deficiencies, which in turn impact mitochondria, metabolism and metabolic pathways in the body. Subsequently, this can cause a great many downstream health effects, including ME/CFS symptoms.

An official EPI diagnosis is often done when around 90% of the exocrine functionality has been impacted, in part due to the difficulty in determining gradations of damage. However, your health can still be impacted through nutrient deficiencies even if a much smaller portion of the functionality is not optimal. Anything between 1 to 90% pancreatic enzyme insufficiency is something I have called pre-EPI (like pre-diabetes for the endocrine side of the pancreas).

Most doctors, especially family practice or primary care physicians, who are often the ‘gatekeepers’ to the specialists, are not experienced in recognizing the huge range of symptoms, and have no idea how to properly test for it. Even if you are eventually diagnosed by a specialist, potentially many years of suffering and further damage later, there is little practical comprehensive help.

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Often Overlooked and With Recovery Actions to Consider

For those struggling with Chronic Fatigue Syndrome (ME/CFS) and ailments that are wide ranging and difficult to diagnose, pancreas dysfunction and malabsorption are hardly ever considered as a possible link to many symptoms, both by doctors and sufferers.

Everyone is aware of the diabetes crisis, but the pancreas has another crucial but far lesser known function, the exocrine side, which produces the enzymes we need to digest and absorb our food. Any level of pancreatic enzyme dysfunction can cause nutrient deficiencies and subsequent health issues affecting the functioning of, for example, heart, lungs, intestines, brain, nerves, bones, muscles, neurotransmitters, hormones, immune system, mitochondria and microbiome, as it did with me.

Pancreas damage, specifically exocrine pancreatic insufficiency (EPI), causes malabsorption, nutritional deficiencies, and often related issues such as small intestinal bacterial overgrowth (SIBO), Candida yeast overgrowth, acid or silent reflux which exacerbate the situation. Over time your metabolism struggles, and metabolic pathways no longer function properly. The body’s mitochondria have a tougher time generating energy (ATP). This can subsequently have an impact anywhere in the body, cause vicious cycles, and hence be an underlying source of a wide variety of seemingly unrelated symptoms.

The long lasting impact of EPI and malabsorption on metabolism and mitochondrial functioning from chronic nutrient deficiencies is often overlooked.

Root causes and bodily insults that cause oxidative stress, mitochondrial dysfunction, microbiome imbalances and pancreatic damage are frequently not addressed comprehensively, to the detriment of the sufferer.

With EPI you have to look at the situation in an integrative and holistic way. There can be too broad a range of symptoms, all with their own medical specialties, so that the overal picture and root cause is lost. This can lead to many years of unnecessary suffering and a diagnosis that is established much, much later.

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Treatment Part 2 – Deficiency Rebalancing

There are a few areas which may require specific supplementation attention for those with pancreas damage, especially for exocrine pancreatic insufficiency (EPI) sufferers. This was needed to help me heal and start functioning again. A few key groupings of nutrient rebalancing which helped me, not just with EPI, but also many of the downstream effects of exocrine pancreatic insufficiency are:

1. Deficiencies Rebalancing:

● Macronutrients

Calories for energy through carbohydrates, proteins, fats.

● Micronutrients

Vitamins, minerals, trace elements.

● Phytonutrients

Plant based chemicals such as carotenoids or flavonoids.

● Fatty Acids:

Essential omega-3, -6, and nonessential omega-9.

● Amino Acids:

Essential and nonessential building blocks of protein.

2. Mitochondrial and Chronic Fatigue Syndrome (CFS) Support

Mitochondria are essential organelles in animal and plant cells which are, simply put, the energy power plants of our cells. ATP (adenosine triphosphate) is the energy storage that they produce. They are in almost all our cells, and the heart, liver, pancreas, kidneys and muscles contain large amounts due to their high energy demand. Any dysfunction in the mitochondria can have a large impact on your health. Due to the long-term nutrient deficiencies, the energy producing mechanism was possibly no longer functioning optimally. ATP production in cells needs to be supported as much as possible during the healing and recovery time, and beyond. In my case the downstream effects of nutrient deficiencies also caused chronic fatigue symptoms. Providing additional supplementation beside a very healthy balanced diet helped resolve many of my symptoms. Some of the supplements I used included:

● Amino acids

● Antioxidant support

● Intestinal healing support

● Methylation support

● Mitochondrial support

● Neurotransmitter support

● Omega-3

● SIBO, Candida yeast overgrowth resolution support

● Vitamins and minerals

It is important to note that I did do a lot of nutrient testing as well to keep track of improvements and of areas that required more focus. Supplements were cycled in and out, fine-tuned, and after imbalances were resolved taken out of the mix. I now sporadically take supplements if I feel or see an imbalance either through test results or symptoms, as you will learn to listen to your body better through the whole process.

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Treatment Part 1 – PERT or Pancreatic Enzyme Replacement Therapy 

Maldigestion is an impaired breakdown of nutrients through either lack of digestive enzymes and/or gastric acid production issues. This in turn causes malabsorption, as nutrients are not broken down into useful absorbable components, which then causes malnutrition. With EPI, you are slowly and painfully starving to death, first nutritionally and eventually completely. Your muscle tissue and bones are used up internally as nutrient fuel. This is when pancreatic enzymes come into the picture.

Pancreatic enzymes are absolutely crucial for survival and to improve quality of life when you have EPI. The generic term for these enzyme pills is Pancrelipase. I have been prescribed Pancrelipase pills called Creon as well as Pancreaze, which are some of the few prescription brands of pancreatic enzyme replacement pills. They are essentially pancreatic enzymes such as lipase, amylase and protease from a pig’s pancreas in tightly controlled quantities.

PERT or Pancreatic Enzyme Replacement Therapy is getting a prescription of one of the available Pancrelipase medications and start dialing in the quantities you need for your personal situation and diet. This will take a bit of trial and error in the beginning, but many doctors start with 36,000 units of lipase, which is how the pill sizes are noted as. They all contain amylase and protease as well at different quantities, and in addition many are enteric coated.

Enteric coated

Importantly, the Pancrelipase pills need to be able to get through the stomach acid bath into the duodenum where the pancreatic enzymes are needed for further digestion, therefore many of them are enteric coated.

There are also many over the counter digestive and vegetarian type of enzyme supplements containing, e.g., bromelain and papain. But, this will not be sufficient because of how crucial it is to get very specific and controlled amounts of enzymes for each meal, as well as likely not being enteric coated.

Some FDA approved Pancrelipase medications that are available are:

● Creon®

● Pancreaze®

● Pertyze®

● Ultresa®

● Viokace®

● Zenpep®

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Causes of Exocrine Pancreatic Insufficiency (EPI)

EPI causes maldigestion and malabsorption of food. This causes malnutrition and nutrient deficiencies, which in turn impacts the metabolism and metabolic pathways in the body, and subsequently can cause many downstream health effects.

Some known causes of EPI are:

● Pancreatitis

● Infections

● Cancer

● Cystic fibrosis

● Duct obstructions

● Surgery

● Pancreas atrophy

● Alcohol abuse

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What is EPI or Exocrine Pancreatic Insufficiency?

Exocrine pancreatic insufficiency (EPI) is a condition which occurs when the acinar cells in the pancreas are damaged or the organ is unable to deliver pancreatic juice in sufficient quantities, and at the right time, into the small intestine. The main enzymes the pancreas produces are grouped as follows:

● Lipase: enzymes that break down fats, such as pancreatic lipase, cholesterol esterase, and phospholipase.

● Protease: enzymes that break down proteins such as elastase, carboxypeptidase, trypsinogen and chymotrypsin.

● Amylase: enzymes that break down carbohydrates.

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