Autoimmune diseases result from a dysfunction of the immune system. The immune system protects you from disease and infection. Sometimes though, the immune system can produce autoantibodies that attack healthy cells, tissues, and organs. This can lead to autoimmune disease. Autoimmune diseases can affect any part of the body. More than 100 autoimmune diseases have been identified. Some are relatively well known, such as type 1 diabetes, multiple sclerosis, lupus, and rheumatoid arthritis, while others are rare. Collectively, autoimmune diseases are among the most prevalent diseases in the U.S., affecting more than 23.5 million Americans, with some estimates as high as 50 million.1
These auto-immune diseases are growing at an alarming rate. In fact, it's an epidemic, and it is expensive. Globally, $47 trillion is being spent on healthcare caring for these complex chronic diseases, which is more than the Gross Domestic Product of the United States and all other countries combined. It's an incredible financial burden that we can't pay, and it's only going to grow if we don't change our focus.
Today’s healthcare system has not been created to handle patients who don’t fit into the established boxes that the system is built on. For those living with one of the confounding autoimmune diseases, this will feel like the understatement of the century. So why, in our billion-dollar, first-world healthcare system, is autoimmunity so vexing?
Challenge #1: An Invisible Epidemic
For many people living with an autoimmune disease, it can take several years and visits to multiple doctors before a diagnosis is made. Early symptoms may include fatigue, joint and muscle pain, fever, or weight change. Other symptoms depend upon which part of the body is impacted. As these symptoms are nonspecific, many patients do not receive an accurate diagnosis for years after symptoms first arise. Why are autoimmune diseases so hard to diagnose? Because normally what they appear to be isn’t what they are. With an autoimmune condition, the immune system mistakes the body’s own cells as foreign and launches attacks on healthy tissues. These attacks can manifest almost anywhere in our bodies as pain, inflammation, a rash or other kinds of damage, but the affected system or organ may not have anything to do with the condition itself. This unpredictability makes diagnosis very tricky. In addition, there is not yet a definitive blood test or biomarker for autoimmune illness and the symptoms are often “invisible” to those outside of the patient’s own body. Patients experience very real and debilitating symptoms but their tests results come back negative or inconclusive. When that happens, their illness is deemed either abnormal or nonexistent. A patient may appear at an emergency room with acute abdominal pain, for example, but if the blood work comes back normal, then it leaves the doctors flat-footed. That patient is likely to receive some kind of symptom-suppressing drug before being sent home. The problem was real, but the illness was not exactly what it appeared to be. That patient leaves the ER with the immediate problem solved, but without any understanding of the problem or what caused it. Accurate diagnosis can take as long as five to seven years. Simply stated, our society has an exploding disease area with no effective diagnostic tools.
A 2012 study by NIEHS researchers found that over 32 million people in the U.S. have autoantibodies. Earlier studies have shown that autoantibodies can develop many years before the clinical appearance of autoimmune diseases.2
CHALLENGE #2: WHERE'S THE DATA?
Autoimmune disease is an umbrella category that is made up of around 100 different diseases. Having to use the word “around” is an issue. Today, incredibly, there are few researchers who study autoimmunity as a whole. Rather, research focuses on diseases, individually. A 2003 NIH report found that autoimmune disease research is just 9% of the spending on cancer research, despite the lower impact on healthcare spending.
CHALLENGE #3:ONE SIZE FITS NO ONE
The problem is that, particularly in the realm of autoimmune diseases, what works for one patient does not work for the next. Patients are not necessarily able to replicate someone else’s results. These are not diseases where one vaccine applies to all victims.
The future of medicine lies in a more patient-centered system that is capable of looking at each individual person—their lifestyle, their environment, their genetic profile—in order to understand all the components that combine to produce their condition, whatever it is. This kind of individualized approach cannot occur in a system where every patient with a given diagnosis receives the same medication or treatment.
CHALLENGE #4: CURRENT TREATMENT IS MERELY A BAND-AID
Currently there is no ‘cure’ for autoimmune disorders. Once a diagnosis is finally made, the only treatment option for doctors is to use disease modifying medications. The challenge with these medications is that they actually provide long term relief for fewer than 30% of autoimmune patients and most have potentially harmful side-effects. These medications do not address the root-cause of the disorder and do not address the lifestyle factors that contributed to the development of the disease in the first place.
While the causes of autoimmune diseases remain largely unknown, there is growing consensus in the scientific community that autoimmune diseases likely result from interactions between genetic and environmental factors. Genetics are a factor when determining one's likelihood of developing an auto-immune issue. Scientists know that when one family member has an autoimmune condition, other family members are at an increased risk of autoimmunity — though not necessarily for the same disease. It’s not uncommon to see multiple auto-immune conditions within an extended family. What this means is that one of the main factors contributing to autoimmune sensitivity is likely genetic.
The rate at which autoimmune conditions are rising far outpaces the rate at which genes can pass them on, Noel Rose, MD, PhD, founding director of the Johns Hopkins Autoimmune Disease Research Center says. “Autoimmune diseases, like many diseases, are a combination of genetic susceptibility on one hand and some exposure on the other,” he says. “We’re talking about an increase over 20, 25, 30 years. Genetics don’t change that rapidly, so it must be something environmental.” 3
Biologists once believed that our genes didn’t change except for internal mutation. Researchers now understand that environmental factors alter our genes throughout life. Current research shows that it isn't just our genes that are making us sick. Studies conclude that non-genetic factors contribute about 90% of the risks of chronic diseases.4 These factors include diet, stress and lifestyle. Almost all disease results from the interaction between genetic predisposition and external factors, such as diet, exercise, stress, smoking, environmental exposure and emotional wellbeing.
These external factors are called epigenetic factors. Epigenetics are defined as relating to or arising from non-genetic influences on gene expression. Caldwell Esselstyn, the head of Cardiac Nutrition at the Cleveland Clinic, maintains that chronic diseases are manifestations of the body's reaction to unhealthy diets and lifestyles and are susceptible to epigenetic-based treatments. Epigenetics explains why smokers contract lung cancer. It also explains how the body sometimes reverses chronic disease. Environmental factors (diet, exercise,emotional wellbeing) can trigger positive bio-chemical release that promotes healing.
In short then, chronic disease is primarily caused by lifestyle issues; how people take care of themselves; what they're thinking, how they're feeling, what they're eating, how they're exercising, etc. These variables play a large role in disease, so we need a new set of tools to be able to combat this disease epidemic.
A large part of what is making us sick is how we eat. Poor nutrition underlies chronic inflammation, which is the pathophysiologic process underlying most complex chronic disease. Chronic inflammation is the underlying process that affects cancer, heart disease, bowel disease, kidney disease, joint disease and diabetes. Inflammation is also at the root of autoimmune disorders, conditions like Lupus, Rheumatoid Arthritis, Irritable Bowel Syndrome and Psoriasis.
The vast majority of complex chronic diseases, including auto-immune diseases, can be handled through lifestyle interventions. One of the biggest aspects of lifestyle change is food because food influences biology. Food is not just calories. Food is not just macronutrients in terms of proteins, fats and sugars. Food is information. How much fiber are we getting? What about antioxidants? So the phytonutrients we see in plants, the plant genome is critically important. And there are anti-nutrients - these are bad things that we can take in, such as food additives, other chemicals and artificial sweeteners. So each one of these factors influences our biology.
“Combating an autoimmune disease, once you already have one, is extraordinarily difficult, as many people know,” Kathleen Gilbert, an immunologist and retired professor at the University of Arkansas for Medical Sciences, says. “The more we work on trying to figure out the triggers for autoimmune diseases, the more likely we will be able to start avoiding them—and avoiding the toll they take on patients.” 6
We define a trigger as “something in your diet or lifestyle that causes or contributes to symptoms”. There are two tricky things about triggers. One is that they are completely individualized - what acts as a trigger for one person may not trigger another, even when they share the same diagnosis. And the other tricky thing is that they must be found by looking at patterns and correlations that are often complex and therefore hard to detect with the naked eye.
As the promise of artificial intelligence has become more accessible, the concept of an individualized diet becomes more tangible. Companies have begun to emerge that market “nutrigenomics,” or the idea that a DNA test can provide guidance for what foods you should eat. These companies offer at-home saliva tests that promise to return a full panel of food insensitivities, but most feel that this is still quite theoretical, lacking real data to back up it’s validity.
We think of symptoms as signals from the body. Those signals can be translated into data, which both eliminates subjective observations and allows for machine processing. Translating your health into data allows hidden or complex patterns to emerge and that is precisely how to pinpoint triggers.
- Mette, Founder & CEO
Most of us know the general rules for leading healthier lives - quit smoking, exercise more, eat less sugar, etc. So why don't we do it? Change is hard. And it isn't hard because we are just lazy or lack self discipline. It is hard because we have complex neurological networks that have been created around our patterns and habits that are difficult to unwind. The patterns we create are intertwined with our environment, the people we surround ourselves with, our backgrounds, belief systems and so much more. Creating lasting change is difficult and is not easily done on one's own.
Research shows that working with a health coach is a very effective way to achieve change. A Mayo Clinic study of 100 participants who worked with a wellness coach found that a majority had lost weight, improved nutritional habits and increased their physical activity by the end of the 12-week program. While there was some slippage in healthy behaviors at a three-month follow-up, the participants were still in better shape than before the coaching started, the study found.
“Many people can implement positive lifestyle changes, but maintaining change over time is extremely difficult. This finding highlights the importance of ongoing strategies and support for positive lifestyle changes.''
- Matthew M. Clark, a clinical psychologist at Mayo Clinic and the lead author of the study.
Health coaching is patient-oriented and works with the individual to change their behavior. The purpose of health coaching is to motivate patients to achieve goals that enhance the quality of their lives and improve their health. A coach’s role is to help patients weigh options, make choices and identify challenges to help them change for the better. The role involves listening, understanding, facilitating, applauding, supporting, motivating and providing feedback to the patients. Health coaches help patients gain the knowledge, skills, and confidence to become informed and active participants in their own care.
Change is hard even when we know what to do to feel better, but what about when we don't know what is making us sick? In the case of auto-immune diseases, there is no cure-all or one diet that we can follow to tell us what to do to get to the root causes of an individual's disease. It requires an individualized approach to determining the environment triggers that are making each person sick. In this case, the health coach is essential, and acts as a health detective, making correlations between a person’s symptoms and lifestyle factors to determine what triggers may be contributing to disease.
Once those triggers have been identified, the health coach works to support the client and pave the way for needed change. The cycle of change is a non-linear process that often results in falling back into old habits before permanent change takes place. This is where it is extremely helpful to have the support of a health coach. Coaches can help identify the rationale that leads people to do the very thing that makes them sick. They can also take the shame and blame out of the process and remind you that the problem is not in your head, it is not a character flaw and it is actually solvable.
A good coach acts as both cheerleader and motivator, and works to support and guide change together with the client.
Autoimmune diseases, where a person’s body essentially attacks itself, are extremely hard to diagnose. The current system lacks the right diagnostic tools to understand and treat these diseases, which are growing and affecting ever-larger groups of people—both men and women, all races and ethnicities.
The future of auto-immune treatment lies in a more patient-centered system that is capable of looking at each individual person—their lifestyle, their environment, their genetic profile—in order to understand all the components that combine to produce their condition, whatever it is. This kind of individualized approach cannot occur in a system where every patient with a given diagnosis receives the same medication or treatment. As you’ve read in these pages, autoimmune diseases create pain and inflammation in otherwise healthy tissue and healthy organs, so removing the organ or treating the inflammation is, at best, a short-term or partial fix and, at worst, a wasted, mistaken procedure.
Our lifestyle plays an enormous role in whether or not we get an auto-immune diagnosis and how that disease progresses. One of the best-known spokesmen for functional medicine is the chairman of the Institute for Functional Medicine, Dr. Mark Hyman, who says, “The smartest doctor in the room is always your own body.”7 This is a crucial piece of advice for autoimmune patients, who must learn to listen carefully and to pick up on the signals their bodies send.
In order to reverse the symptoms of disease, one needs to identify and change the lifestyle factors that are contributing to the disease. This can be done on one's own or by working with a trained health coach who can support the journey back to wellness. Once people understand the correlations between their symptoms and triggers, they can really embrace the difference that changes can make, and understand the consequences of continuing the old behavior versus the potential benefits of the new one.
4 Implications of the exposome for exposure science/ Rappaport, S. Implications of the exposome for exposure science. J Expo Sci Environ Epidemiol 21, 5–9 (2011) doi:10.1038/jes.2010.50
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