“Nothing in life is to be feared, it is only to be understood.” —MARIE CURIE
The first step to living well with autoimmune disease is being informed about your illness. We have chosen this as the first step, because the burden of truly understanding lies with you. Although there is a lot of information to be gained in working with a skilled doctor, relying on him or her to also be your teacher detracts from your personal responsibility in healing. You may find learning the details about your disease to be unnerving, because knowing makes it hard to hide from your new reality. After the initial fear subsides, understanding inspires a level of courage you previously didn’t have and empowers you to take control of your health and start on the path toward healing. In this chapter, we aim to give you an overview of what autoimmune disease is, how to get and cope with a diagnosis, the different treatments you might expect, and how to gather and store information.
Simply put, autoimmune disease occurs when your immune system, which is designed to protect you from foreign invaders (pathogens like viruses and bacteria), starts attacking your own tissue. This is done through the creation of antibodies, which are ordinarily used to identify and destroy pathogens and help you recover from an illness. In the case of autoimmunity, however, these antibodies target your own healthy tissue, which leads to inflammation and destruction of your cells. This is like your own team playing against you—not fair!
The American Autoimmune Related Diseases Association (AARDA) estimates that more than 50 million Americans (roughly 1 in 6) suffer from autoimmune diseases, 75 percent of which are women. Medical science has identified more than 100 autoimmune diseases, with another 40 suspected to have an autoimmune component. Autoimmune disease is one of the most significant health-care issues facing our world today. According to the AARDA, in the United States alone, more than $100 billion is spent annually on the conventional treatment of this condition. Its incidence is on the rise, with some disease prevalence tripling in the last decade. It remains poorly understood, with no medical specialty to support it and a severe lack of research funding, as well as treatment options that only manage symptoms, but do not produce lasting wellness.
Autoimmune disease can involve any organ or system in your body, including joint, skin, digestive, hormonal, connective, nerve, and muscle tissues. If you have rheumatoid arthritis, your joints are affected; if you have Hashimoto’s thyroiditis, it’s your thyroid; and if it’s multiple sclerosis, the myelin, the protective layer around your nerves, is destroyed. While it may seem that these conditions are vastly different, the common thread of an immune system gone haywire links them together. Often, autoimmune disease affects multiple organs or systems, which can cross medical specialties and make getting proper treatment extremely difficult.
Some autoimmune diseases cause chronic, consistent symptoms, while others are characterized by periods of remission (little or no disease activity) and flare (more disease activity). Autoimmune diseases commonly present with nonspecific symptoms like pain and fatigue, which are not easily identified with a particular condition and make diagnosis difficult. Symptoms can also vary widely from person to person, making a correct diagnosis tough to nail down.
The symptoms of autoimmune disease can range from life-threatening and serious, rendering a patient in need of round-the-clock care, to a mild annoyance that barely disrupts a person’s life. Most of us, however, fall in the middle of the spectrum—we live with chronic symptoms that impact our productivity and abilities, yet our health-care providers and those in our support network often don’t understand and are unable to provide lasting relief.
If you have an autoimmune disease, it’s likely you will find the diagnosis process and treatment options challenging, at best. There is no medical specialty focusing on autoimmune disease in general. As a patient, you are treated by a specialist focused on the organ or system involved in the condition, rather than your whole body. If you are feeling isolated and lacking support, you are not alone—many of us have felt this way. If we have you worried, it’s not all doom and gloom! There are ways of using the conventional system to your advantage and tools at your disposal for living well despite autoimmune disease.
Autoimmune diseases are usually classified into two categories. There are organ-specific diseases, like Hashimoto’s thyroiditis (which affects the thyroid gland) and type 1 diabetes (which affects the pancreas) and non-organ-specific diseases, like rheumatoid arthritis (which affects the joints) and lupus (which affects connective tissue). The most commonly affected organs are those of the endocrine system, such as the thyroid, pancreas, and adrenal glands. The most commonly affected non-organ tissues are those of the blood, like red blood cells, or connective tissue, like muscles and joints. Some diseases seem to occur between the two types and some people may experience several autoimmune diseases at the same time. Additionally, many autoimmune diseases commonly coexist with others, for example celiac disease and Hashimoto’s thyroiditis. If you have three or more autoimmune diseases, you have multiple autoimmune syndrome.
The autoimmune process itself can also take different forms. Specific cells or tissues might steadily be damaged, an organ might grow excessively large, or the function of an organ may be disturbed. Some diseases are life threatening, others are disabling, and still others, if they are recognized early, can be successfully treated or managed relatively easily.
Autoimmune disease affects millions of Americans and many more people worldwide, but there are particular groups who are most at risk. In addition, research has identified three contributing factors that interact with each other to cause the development of autoimmune disease.
1. GENETICS —The genes you inherit from your parents play a part in determining your predisposition for developing an autoimmune disease, and because of this, it is very common for them to run in families. For instance, the incidence of celiac disease in the general population is 1 in 100 people, while the incidence in those with a first-degree family member who has it, like parents, siblings, or children, is 1 in 22.
Unlike genetic diseases, however, where one or two gene mutations are responsible for the disease, there are countless genes that affect your risk for autoimmune disease. Instead of inheriting one specific autoimmune gene, you inherit a larger collection that puts you at risk for developing an autoimmune disease. This may place you at more or less risk for certain diseases and it is why specific diseases are not always inherited in families, but many members of the same family suffer from different related autoimmune diseases. For instance, your mom may have type 1 diabetes, while your aunt has Crohn’s, and your sister has Hashimoto’s thyroiditis. Similarly, those who already have an autoimmune disease are at a higher risk for developing additional diseases, because they most likely have acquired the collection of genes that predisposes them to autoimmune disease.
Disproportionately 1 of the greatest risk factors is gender, with females making up 75 percent of the diagnosed autoimmune population, most likely because of the hormonal differences between the sexes. Your ethnicity is also a factor. African-Americans, Native Americans, and Latinos are at a greater risk than Caucasians.
2. ENVIRONMENTAL TRIGGERS —Although it can be handy to blame autoimmune disease all on genetics, it only accounts for about one-third of your risk of developing one. It is often said that while genes load the gun, environment pulls the trigger. Pathogens, chemicals, and substances your immune system is exposed to in your daily life can have an impact on whether or not you develop an autoimmune disease.
Certain bacterial and viral infections, both acute and chronic, have been linked to the development of autoimmunity—most likely because they contain proteins that closely resemble your own, confusing the immune system. Exposure to toxins and chemicals can similarly trigger autoimmunity. You are exposed to these components through pollution, the water supply, pesticides and herbicides in foods, cleaning products, personal-care products, chemical exposure in your home or in your workplace, and more.
3. DIET AND LIFESTYLE —A poor diet contributes to the development of autoimmune disease by exacerbating intestinal permeability, creating nutrient deficiencies, and overactivating the immune system. Similarly, sleep issues, lack of movement, and drug exposure, both prescription and recreational, can also increase your risk of developing autoimmune disease.
Stress also plays an important part in the autoimmune disease process. People experiencing acute and unmanaged stress or chronic stress are often at higher risk for developing autoimmune disease.
Finally, your geographic location may play a role. For example, in the United States, it has been shown that those living in the Pacific Northwest have a higher incidence of certain autoimmune diseases, which may be in part due to lack of natural sunlight at higher latitudes, contributing to vitamin D deficiency.
While you can’t do much about your genetic inheritance and exposure to infectious disease, you can do something about managing your dietary and lifestyle choices, as well as limiting your contact with toxins and chemicals, and we’ll get into this in more depth in Chapters 3 and 6 .
Roughly 25 percent of those of us with 1 autoimmune disease will go on to develop additional autoimmune diseases. Having 3 or more diagnosed autoimmune diseases is classified as multiple autoimmune syndrome (MAS). This syndrome usually includes one skin disorder, such as psoriasis or vitiligo. Awareness of the autoimmune diseases related to your current diagnosis can be helpful if signs of new diseases become apparent, as it can make these new diagnoses easier for health-care providers by pointing them toward likely disorders and allowing for earlier identification of multiple autoimmune syndrome. For instance, celiac disease is associated with type 1 diabetes, Hashimoto’s thyroiditis, Graves’ disease, and Addison’s disease. Delay in diagnosis allows more time for further autoimmune diseases to develop, which is a second reason that awareness of MAS is so important.
I have multiple autoimmune syndrome (MAS), which is defined as having three or more diagnosed autoimmune diseases. Mine are celiac disease, endometriosis, and lichen sclerosus. Lichen sclerosus (LS) is an autoimmune skin condition, and due to its nature (affecting the genitals and causing discomfort, tearing, and bruising of the skin), most sufferers are incredibly private about their diagnosis. When I received mine, I had no idea that it was an autoimmune disease, that my risks of developing further autoimmune diseases were heightened, or that MAS existed and how it often includes a skin condition. LS was my very first autoimmune diagnosis, and I learned about it many years before my next. Had I understood and been fully informed, perhaps I could have taken more preventative measures in my health care or proactively advocated for myself with doctors in order to be vigilant about developing new diseases. I might have even discovered the new diseases more quickly, if I had been able to point out my existing condition as autoimmune and help direct my doctor’s suspicions as I grew more ill with autoimmune disease. I decided several years ago to begin speaking about LS publicly in the hope that others would feel less ashamed in seeking treatment for skin conditions, even ones that were difficult to reveal, in order to catch disease progression early and possibly prevent going on to develop additional autoimmune diseases.
While some diseases have a clear autoimmune component, many are suspected to have an autoimmune component, and in some cases, that has yet to be proven. Other conditions are known to be pathogenic in origin, but the initial infection can trigger an autoimmune response (such as Lyme or Chagas disease). We’ve compiled this list to include all conditions on the autoimmune spectrum ranging from specifically autoimmune to those that are suspected to be autoimmune in nature.
Acute disseminated encephalomyelitis (ADEM)
Acute necrotizing hemorrhagic leukoencephalitis (AHL)
Addison’s disease
Agammaglobulinemia
Alopecia areata (AA)
Amyloidosis
Ankylosing spondylitis
Anti-GBM/Anti-TBM nephritis
Antiphospholipid syndrome (APS)
Autoimmune angioedema
Autoimmune aplastic anemia
Autoimmune dysautonomia
Autoimmune hemolytic anemia (AIHA)
Autoimmune hepatitis (AIH)
Autoimmune hyperlipidemia (AIH)
Autoimmune immunodeficiency
Autoimmune inner ear disease (AIED)
Autoimmune myocarditis
Autoimmune oophoritis
Autoimmune pancreatitis (AIP)
Autoimmune retinopathy (AIR)
Autoimmune thrombocytopenic purpura (ATP)
Autoimmune urticaria
Axonal and neuronal neuropathies
Balo disease
Behcet’s disease
Bullous pemphigoid
Castleman’s disease (CD)
Celiac disease
Chagas disease
Chronic inflammatory demyelinating polyneuropathy (CIDP)
Chronic recurrent multifocal osteomyelitis (CRMO)
Churg-Strauss syndrome (CSS)
Cicatricial pemphigoid/benign mucosal pemphigoid (MMP)
Cogan syndrome
Cold agglutinin disease
Congenital heart block
Coxsackie myocarditis
CREST syndrome
Crohn’s disease
Dermatitis herpetiformis (DH)
Dermatomyositis (DM)
Devic’s disease/neuromyelitis optica (NMO)
Discoid lupus
Dressler’s syndrome
Endometriosis
Eosinophilic esophagitis (EoE)
Eosinophilic fasciitis (EF)
Erythema nodosum (EN)
Essential mixed cryoglobulinemia
Evans syndrome
Experimental allergic encephalomyelitis (AEA)
Fibrosing alveolitis
Giant cell arteritis/temporal arteritis (GCA)
Giant cell myocarditis
Glomerulonephritis
Goodpasture syndrome
Granulomatosis with polyangiitis (GPA) (formerly called Wegener’s granulomatosis)
Graves’ disease
Guillain-Barré syndrome (GBS)
Hashimoto’s encephalopathy (HE)
Hashimoto’s thyroiditis
Henoch-Schönlein purpura (HSP)
Herpes gestationis
Hypogammaglobulinemia
Idiopathic pulmonary fibrosis (IPF)
Idiopathic thrombocytopenic purpura (ITP)
IgA nephropathy
IgG4-related sclerosing disease
Interstitial cystitis (IC)
Juvenile arthritis (JA)
Juvenile diabetes (type 1 diabetes)
Juvenile myositis (JM)
Kawasaki syndrome
Lambert-Eaton myasthenic syndrome
Leukocytoclastic vasculitis (LCV)
Lichen planus
Lichen sclerosus
Ligneous conjunctivitis (LC)
Linear IgA disease (LAD)
Lyme disease, chronic
Mèniére’s disease
Microscopic polyangiitis (MPA)
Mixed connective tissue disease (MCTD)
Mooren’s ulcer (MU)
Mucha-Habermann disease
Multiple sclerosis (MS)
Myasthenia gravis
Myositis
Narcolepsy
Neonatal lupus
Neutropenia
Ocular cicatricial pemphigoid (OCP)
Optic neuritis (ON)
Ord’s thyroiditis
Palindromic rheumatism (PR)
Paraneoplastic cerebellar degeneration (PCD)
Paroxysmal nocturnal hemoglobinuria (PNH)
Parry-Romberg syndrome
Parsonage-Turner syndrome (PTS)
Pars planitis (peripheral uveitis)
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus (PANDAS)
Pemphigus vulgaris
Peripheral neuropathy
Perivenous encephalomyelitis
Pernicious anemia
POEMS syndrome
Polyarteritis nodosa (PAN)
Polymyalgia rheumatica (PMR)
Polymyositis (PM)
Postpericardiotomy syndrome (PS)
Primary biliary cirrhosis (PBC)
Primary sclerosing cholangitis (PSC)
Psoriasis
Psoriatic arthritis
Pure red cell aplasia (PRCA)
Pyoderma gangrenosum
Raynaud’s disease
Reactive arthritis/Reiter’s syndrome
Reflex sympathetic dystrophy (RSD)
Relapsing polychondritis (RP)
Restless legs syndrome (RLS)
Retroperitoneal fibrosis (RPF)
Rheumatic fever
Rheumatoid arthritis (RA)
Sarcoidosis
Schmidt syndrome
Scleritis
Scleroderma
Sjögren’s disease
Sperm and testicular autoimmunity
Stiff person syndrome (SPS)
Subacute bacterial endocarditis (SBE)
Susac’s syndrome
Sympathetic ophthalmia (SO)
Systemic lupus erythematosus (SLE)
Takayasu’s arteritis
Temporal arteritis/Giant cell arteritis (GCA)
Thrombocytopenic purpura (TTP)
Tolosa-Hunt syndrome (THS)
Transverse myelitis
Type 1 diabetes
Type 1, 2, and 3 polyglandular autoimmune syndromes (PAS)
Ulcerative colitis (UC)
Undifferentiated connective tissue disease (UCTD)
Uveitis
Vasculitis
Vesiculobullous dermatosis
Vitiligo
Why Do You Need a Diagnosis?
In order to prevent complications from the damage caused by autoimmune disease, early diagnosis is essential. A correct diagnosis helps you to connect with the specialists and other medical providers you need, weigh treatment options, and think about how you want to navigate dietary and lifestyle modifications. Unfortunately, obtaining a proper diagnosis is often the most difficult part of the process for those of us suffering from autoimmune disease.
According to the American Autoimmune Related Diseases Association (AARDA), those with an autoimmune disease spend an average of 4 years seeking diagnosis, with visits to more than 4 physicians in the process. Some go undiagnosed for years, while others get misdiagnosed with other conditions. The undiagnosed and misdiagnosed rate for just 1 of these diseases, celiac disease, can be as high as 83 percent, which shows how difficult it truly can be to obtain answers. Autoimmune disease symptoms can be nonspecific, mild, and gradually build over time, making it difficult for you to determine if you need to see your physician about them. Often, when you do, you are told everything is fine and further testing that could uncover early warning signs isn’t ordered.
One of the biggest issues with the treatment of autoimmune disease is that there is no medical specialty to serve these diseases as a whole. In combination with them being poorly understood by the medical profession, in general, this leads to patients being bounced around between primary-care physicians and specialists before obtaining proper testing and treatment. An AARDA study showed that 46 percent of autoimmune patients were told they were complainers or too obsessed with their health, instead of being offered the medical testing and treatment they needed.
Many of us who suffer from autoimmune symptoms wonder why we should even bother seeking a diagnosis, especially if our symptoms can improve just by making dietary and lifestyle changes. However, as you can see from the following list, there are benefits to having a clear diagnosis.
1. It helps you connect with the right medical specialist for your condition.
2. It helps medical practitioners decide which testing to pursue regularly to gauge progress.
3. It helps you and your doctor decide which treatment option (medication, surgical, or other) is best for you.
4. It helps you connect with others who are suffering from the same condition.
5. It helps complementary care practitioners tailor their programs and protocols specifically to your needs.
6. It enables you to research and educate yourself about your disease.
7. It helps you and your doctor practice good preventative care, order testing to gauge progress, and anticipate potential issues.
8. It helps you understand what disease progression might look like as well as signs and symptoms to be aware of.
9. It gives you peace of mind knowing what is causing your symptoms.
Autoimmune Status Self-Test
You cannot get anywhere if you don’t know your starting point. We’ve designed this test to help you evaluate where you are right now. Think of it like the big map in the center of the mall stating, “You are here.” The point is not to dwell on your current experience, but to inform you about where you want to go next in terms of diagnosis, treatment, and lifestyle changes.
We were inspired by the idea that autoimmune disease often occurs on a spectrum, instead of being black or white (first talked about by Amy Myers, MD, in The Autoimmune Solution ), as well as the ideas of Datis Kharrazian, DC, regarding “silent autoimmunity.” This test blends their material with our experience in order to empower those who are suffering from autoimmune disease or chronic illness by providing a starting point.
INSTRUCTIONS: You will find two sections, the first with the same scoring for each question, and the second with an individual scoring system per question. At the end of the test, you will add the scores from both sections to come up with your AUTOIMMUNE STATUS . From there, you will have some information to guide the next steps in your healing journey. You can also come back to Section 1 of this test once you have made some changes to gauge your healing progress over time.
DISCLAIMER
A quick disclaimer—some of the symptoms listed here can indicate serious medical issues that absolutely do require intervention from a medical doctor. If you find yourself here, please see a qualified professional about these symptoms soon. Now, on to the test!
0 = never occurs
1 = occurs rarely (monthly)
2 = occurs occasionally (weekly)
3 = occurs frequently (daily)
__ Fatigue and lack of energy
__ Chronic pain—muscles, joints, and bones
__ Heaviness in limbs, loss of muscle tone
__ Morning stiffness
__ Weakness and/or tremor
__ Headaches
__ Feeling puffy or inflamed
__ Rashes, hives, and skin issues of unknown origin
__ Dry eyes, mouth, or skin
__ Dermatitis or itchy skin
__ White patches on skin or inside of the mouth
__ Mouth ulcers
__ Trouble maintaining a healthy weight
__ Difficulty with exercise
__ IBS, or irritable bowel syndrome—constipation, diarrhea, or both
__ Abdominal pain or stomach cramps
__ Blood or mucus in stool
__ Trouble falling or staying asleep
__ Cold hands or feet and trouble staying warm
__ Heat intolerance and/or sun sensitivity
__ Rapid heartbeat
__ Night sweats
__ Difficulty swallowing, hoarseness, or lump in the throat
__ Decreased sense of taste or smell
__ Difficulty concentrating or focusing (brain fog)
__ Thinning hair or hair loss
__ Loss of outer third of eyebrow
__ Numbness or tingling in extremities
__ Dizziness or lightheadedness
__ Food allergies/sensitivities
__ Dark circles under eyes
__ Unexplained low-grade fever
__ Periodontal infections or gum issues
TAKE NOTE OF YOUR TOTAL FOR SECTION 1 (keep this handy to add below)
This section is scored a little differently—follow the instructions on each question and total them at the bottom.
__ I am a woman (0 = no, 10 = yes)
__ My period is heavy and I cannot make it through without disruptive pain. (0 = no, 1 = yes)
__ Infertility (0 = no, 1 = yes)
__ Multiple miscarriages (0 = no, 1 = yes)
__ Anemia of any type (0 = no, 1 = yes)
__ Osteoporosis or osteopenia (0 = no, 1 = yes)
__ History of chronic viral condition (Epstein-Barr, mono, herpes, shingles, chronic fatigue syndrome, hepatitis, or other chronic viral condition) (0 = no, 5 = yes)
__ A doctor has told me I was too sensitive. (0 = no, 5 = yes)
__ Members of my immediate family have autoimmune conditions (0 = no, 5 = one, 10 = more than one)
__ I have a diagnosis of one autoimmune disease. (0 = no, 30 = yes)
__ I have a diagnosis of two autoimmune diseases. (0 = no, 40 = yes, in addition to the previous question)
__ I have a diagnosis of three or more autoimmune diseases. (0 = no, 50 = yes, in addition to the previous two questions)
TAKE NOTE OF YOUR TOTAL FOR SECTION 2
Now add up the values from Section 1 and Section 2 to discover your autoimmune status.
SECTION 1 TOTAL + SECTION 2 TOTAL = YOUR AUTOIMMUNE STATUS
Compare your autoimmune status score with the categories below:
1-29, STATUS 1: It appears your risk for having an autoimmune disease is low, however if some of the symptoms you are experiencing are bothersome, you should make it a priority to speak with your doctor to find out if they could be caused by other conditions.
30-59, STATUS 2: It appears your risk for having an autoimmune disease is average. This is the phase practitioners sometimes refer to as “silent autoimmunity.” This means that there may be antibodies present, but you are not experiencing disruptive symptoms. If you are suffering from autoimmune disease, this is the best time to seek diagnosis and take action although it can be difficult because many symptoms are not yet present so your doctor may not agree to order antibody testing. If you are having trouble working with your health-care providers on this, we provide more insight in Chapter 2 .
60-99, STATUS 3: It appears your risk for having an autoimmune disease is high, and it is possible that some of your symptoms could be caused by an autoimmune reaction. However, seeking diagnosis may be difficult—although symptoms are present, they might not point to a clear diagnosis. Intervention at this status can significantly improve your quality of life.
100+, STATUS 4: You’ve been diagnosed with an autoimmune disease already, or your combination of health history and current symptoms make diagnosis very likely. Diagnosis at this stage is usually quick, due to multiple and clear symptoms pointing to a specific disease. It is necessary to form a health-care team (if you don’t already have one), start treatment, and consider changes immediately in order to regain quality of life.
Don’t get derailed by the specifics of your symptoms or your autoimmune status according to this test—instead, use this information as a starting point for conversations with your health-care team. In Chapter 2 , we will give you suggestions on how to assemble this team and quickly move forward with plans to restore your best health.
Sometimes patients suffer from chronic symptoms that could be autoimmune in nature but can’t obtain a diagnosis for one reason or another. This might be because of poor-quality medical care or a lack of access to medical care, lack of financial resources for medical care, or not being able to find a collaborative physician who is willing to do the proper testing to make a diagnosis. If you find yourself in this situation, don’t fret! We give you lots of information about how to find a collaborative health-care provider who can assist you in Chapter 2 .
It is common for someone who has one autoimmune disease already to get a diagnosis of additional autoimmune diseases during his or her lifetime. Adding to this, symptoms of some autoimmune conditions are often similar to others, which is known as overlap. This occurs most in the autoimmune conditions that affect connective tissue, such as rheumatoid arthritis, scleroderma, Raynaud’s disease, mixed connective tissue disease, Sjögren’s disease, and lupus. Some autoimmune conditions frequently coexist with others, like Hashimoto’s thyroiditis and Graves’ disease.
These symptom and disease overlaps can make it difficult to obtain an accurate diagnosis and proper treatment. Patients with multiple autoimmune conditions often see different specialists to manage each one. In the case of multiple autoimmune diagnoses, the disease with the most severe symptoms is usually given treatment preference. If you find yourself here, make sure that you are connected to providers who are well equipped to track all of your conditions, even the ones that may not be causing the most severe symptoms.
Because autoimmune disease can cause nonspecific symptoms that overlap with many conditions, patients can often be misdiagnosed with other, nonautoimmune conditions, or they may not be suffering from an autoimmune condition in the first place. It is important to be aware of these diseases that can produce similar symptoms, in addition to the fact that a person can suffer from autoimmune disease in combination with other nonautoimmune conditions.
Here is a list of conditions that are commonly confused with autoimmune disease.
● Alzheimer’s or Parkinson’s disease
● Chronic fatigue syndrome (CFS)
● Chronic infection (can trigger autoimmunity)
● Fibromyalgia
● Irritable bowel syndrome (IBS)
● Lyme disease (can result in autoimmunity)
● Mental disorders like depression, anxiety, and bipolar disorder
● Migraines
● Nutrient deficiency (like anemia)
● Sleep apnea
How do you know if you have been misdiagnosed? This can be tricky to pinpoint and involves a lot of trial and error, but most people find that one or all of the following is true: They do not improve using the typical treatments for their disease; they begin to experience symptoms not explained by their diagnosis; or they continue to get tested and uncover a new diagnosis. For example, a common misdiagnosis for celiac disease is IBS, and patients may realize it was a misdiagnosis when they do not respond to the common IBS treatment.
Although at first it can seem rather cut and dry to receive an autoimmune disease diagnosis, it is rarely that simple. Most of us experience a range of complex emotions following diagnosis. Often the initial reaction is one of relief; you may feel grateful to know the cause of previously unexplained symptoms. This is especially true with an autoimmune diagnosis, since the disease may have been progressing for years with confusing periods of illness and remission that are often dismissed by family, friends, and even physicians. A diagnosis can offer you much-needed validation.
It is not uncommon for your relief to quickly fade, though, and for you to enter the grieving process. Many of us with autoimmune disease encounter a tremendous loss of identity prior to and following diagnosis and may experience some or all of the emotions associated with the Kübler-Ross stages of grief, including denial, anger, bargaining, depression, and acceptance. This process is not necessarily linear, and you might find yourself going back and forth through some of these emotions as you come to terms with your disease.
Many autoimmune disease sufferers report feeling that they are alone and not understood by others. You may struggle to construct a new sense of self, which may be difficult for your loved ones to accept. The ability of your family and friends to cope well with the diagnosis itself may also be very difficult, leading to an even greater sense of isolation. Further, you may experience profound anxiety about increasing physical disability, reliance on others, hospitalizations, treatment options, pain levels, financial strain of health-care costs, and your ability to maintain a job. Understandably, the feeling of being alone coupled with very real physical, emotional, and social concerns can lead to depression.
However, most of us suffering from autoimmune disease can successfully navigate the grieving process and overcome any diagnosis-related depression, eventually finding even greater happiness and personal depth. This requires learning the skills associated with resilience.
For you to rebound successfully after receiving a life-changing autoimmune diagnosis, you need to learn to be resilient. Resilience is a set of skills that gives us the ability to withstand stress and adversity. The first and most important thing to understand about resilience is that it is not something we are born with, and it is not a personality trait. Again, it is a set of skills, which can be learned and, with practice, better used.
Resilience comes down to six behaviors. Taking these actions repeatedly, even if they do not come naturally to you, allows resilience to build.
● MAINTAINING A POSITIVE SELF-IMAGE —having confidence in your strengths and abilities and viewing yourself as a survivor, rather than as a victim.
● MANAGING EMOTIONS AND IMPULSES —this means not freaking out. Although a crisis may at first seem overwhelming, taking time to adjust yourself and then reacting in a calm, composed manner is more effective than losing it.
● TAKING CHARGE OF THINGS IN YOUR CONTROL —actively problem solving, communicating clearly with those around you, and seeking resources that can help you.
● ESTABLISHING HEALTHY VERSUS HARMFUL COPING STRATEGIES —finding ways to laugh, getting exercise, practicing prayer or meditation, considering talk therapy, if appropriate, or spending time with loved ones versus harmful strategies like abusing alcohol or drugs.
● INVESTING IN CLOSE RELATIONSHIPS —forming intimate personal relationships if you are lacking them or devoting time to the important ones that already exist. These relationships together function as a crucial support system that allows you to ask for help and give help. The “giving help” part matters as much as the “getting help,” because it increases meaning in your own life.
● FINDING POSITIVE MEANING IN LIFE EVENTS —reframing negative situations to see their value or the favorable effects these situations may have had on you as a person.
Don’t allow your diagnosis to discourage you; instead, incorporate resilience into your response to the new information you’ve received. This crucial information allows you to move toward wellness.
When I was diagnosed with both Hashimoto’s thyroiditis and celiac disease in the same appointment, I struggled to cope with all the emotions I was feeling related to this new information. While I did feel relief, I was also stuck in a period of intense grief for many months. I was mourning my past life and all of the activities I had assumed I’d never be able to participate in again, like riding horses, cycling, and rock climbing. I was mourning the road trips and spontaneous adventures I had gone on before with my husband and friends. In addition, I was mourning my ability to eat anything and not have to take care of my body so attentively. I knew at this time, one chapter of my life was ending, and I struggled with it immensely. During this phase, it was hard for me to connect with my friends and family and ask for support, despite the fact that they were ready and willing. I suffered from diagnosis-related depression for months until I learned how to cope with my emotions and reorient myself on the road to health.
Testing
There are many laboratory tests that are used to diagnose or gauge treatment progress for those with autoimmune diseases. Depending on your diagnosis or symptoms, you may undergo certain testing only for diagnosis and then another set of testing regularly to assess disease progression and treatment results. These can be divided into four categories.
1. ANTIBODY TESTS— Testing for both antinuclear and autoantibodies is common if there is a known test for the particular autoimmune disease. These tests tell the doctor which tissues the body is targeting and at what rate. Most of the time, antibodies can be directed at the self (tissues within the body), but other times they can be directed toward environmental triggers, such as in the case of transglutaminase (a protein found in wheat) in celiac disease. Antibody tests are used by specialists to make a diagnosis and determine treatment, as well as to gauge how that treatment is working for you.
The following are some common antibody blood tests.
● ANTINUCLEAR ANTIBODIES (ANA) —These are antibodies that target the nucleus of a cell. Sometimes they are present in autoimmune diseases that affect connective tissue, such as systemic lupus erythematosus, Sjögren’s disease, and mixed connective tissue disease. It is important to note that sometimes a positive ANA is found in people without autoimmune disease, and further evaluation is needed for a doctor to make a diagnosis.
● RHEUMATOID FACTOR —This is an antibody that is commonly found in autoimmune diseases that affect the joints, like rheumatoid arthritis.
● THYROID ANTIBODIES (TPO, TgAB, and TSI)—These are three antibody tests that are commonly used to diagnose and treat autoimmune thyroid conditions like Hashimoto’s and Graves’ disease.
● ANTITRANSGLUTAMINASE ANTIBODIES —This test indicates antibodies to proteins found in gluten, which are found in those with celiac disease.
2. TESTING TO DETERMINE ORGAN DAMAGE AND/OR INFLAMMATION— These tests are related to whichever organ is affected by your diagnosed or suspected autoimmune disease. They range from minimally invasive (such as a thyroid ultrasound) to more invasive (such as a colonoscopy). Sometimes the tests are only needed to make a diagnosis, and other times, they are repeated to gauge your progress or to make ongoing decisions about treatment.
Here are some common tests and procedures.
● UPPER ENDOSCOPY —This is a procedure where a small camera on a flexible tube is used to visually examine your esophagus, stomach, and duodenum (beginning of the small intestine). It may also be used to collect tissue samples for a biopsy. This procedure is used in the diagnosis and treatment of diseases affecting the upper gastrointestinal system, like celiac disease.
● COLONOSCOPY —This is a procedure where a small camera on a flexible tube is used to visually examine your colon and rectum. It may also be used to collect tissue samples for a biopsy. This procedure is used in the diagnosis and treatment of diseases affecting the lower gastrointestinal system, like Crohn’s disease and ulcerative colitis.
● MAGNETIC RESONANCE IMAGING (MRI) —This is a test where you are placed in a tube-shaped machine that contains magnets that move back and forth. The magnetic field created by this movement, as well as radio waves, creates detailed cross-section images of tissues throughout your body. This test is used in the diagnosis and treatment of diseases such as multiple sclerosis.
● X-RAY —This is a test where a picture is made of the internal structures of your body, where dense materials such as bone show up well. This test is used in the diagnosis and treatment of diseases that affect the joints and connective tissue, such as rheumatoid arthritis, systemic lupus erythematosus, and mixed connective tissue disease.
● ULTRASOUND —This is a test that uses high-frequency sound waves to produce images within your body. It is used in the diagnosis and treatment of diseases that affect certain organs, like the thyroid in Hashimoto’s disease.
3. GENERAL TESTING RELATED TO OVERALL HEALTH— This testing ranges from being specifically related to the known process of an autoimmune disease (such as the malabsorption of iron and vitamin B12 that is a known factor in celiac disease) to just checking up on your overall well-being and making sure that all organs are functioning properly.
Here are some common general tests.
● CBC (COMPLETE BLOOD COUNT) —This is an overall blood test screen that will reveal things like anemia, infection, and blood disorders.
● CMP (COMPREHENSIVE METABOLIC PANEL) —This is a broad screening to evaluate liver and kidney function that is particularly of interest to those on certain medications.
● NUTRITIONAL ANEMIA PROFILE —These are a series of blood tests including hemoglobin, hematocrit, folate, ferritin, and B12 that helps find the source and track the progress of anemia, which is a common symptom of many autoimmune diseases.
● VITAMIN AND MINERAL TESTS —These are specific blood tests that look for deficiencies in certain vitamins and minerals and are sometimes performed in conjunction with other panels (such as a CMP). Common tests include vitamin B12 , vitamin D, and iron.
● CRP (C-REACTIVE PROTEIN) AND ESR (ERYTHROCYTE SEDIMENTATION RATE) —These are blood tests that indicate the level of inflammation in your body and are useful for tracking treatment progress in conditions like rheumatoid arthritis.
● LIPID PROFILE —This is a collection of blood tests that look at the amount of cholesterol and triglycerides in your blood.
● THYROID PANEL —This is a collection of blood tests that look at the amount of thyroid hormones in your blood. It is common to include TSH (thyroid stimulating hormone) and total T4; sometimes “free” T3, “free” T4, as well as reverse T3 and antibody tests are included.
4. FUNCTIONAL MEDICINE TESTING— While not common, those patients working with a functional medicine practitioner may have testing ordered that goes beyond what is standard in the conventional medical system. These tests are not needed for diagnosis but can help guide your treatment when considering a holistic approach.
● COMPREHENSIVE STOOL TESTING —To perform this test, you send a stool sample to a lab to be evaluated for pathogenic overgrowths or infections like bacteria, yeast, and parasites. Some stool tests include testing pathogens against potential antimicrobial agents, both prescription and herbal, which can be incredibly helpful for guiding your treatment.
● HORMONE TESTING —This is a salivary test used to determine your hormonal balance, both for sex and stress hormones. Many tests call for multiple samples, providing a complete picture of how your levels are fluctuating over a period of time.
● MICRONUTRIENT TESTING —This is a blood test that can help determine if you have any micronutrient deficiencies that aren’t picked up on a conventional lab test (such as vitamin A or selenium).
● GENETIC TESTING —These are both blood and saliva tests that help determine if you have a genetic mutation that may predispose you to autoimmune disease (such as the HLA-DQ gene mutations, as well as the MTHFR gene mutations).
● FOOD AND ENVIRONMENTAL ALLERGEN TESTING —These are blood tests that help determine if you have any sensitivities to food or environmental triggers and can help determine personalized diet and lifestyle interventions.
● ORGANIC ACIDS TESTING —This is a urine test that can help pinpoint metabolic issues, pathogenic overgrowths, neurotransmitter imbalance, oxidative stress, and impaired methylation.
● HEAVY METALS TESTING —This is a test that is performed by drinking a chelating agent (a substance that helps draw out minerals) and then taking a urine sample. It is used to determine if you have a high load of heavy metals in your body.
Unfortunately, there is no cure for autoimmune disease—once the immune system starts attacking the body’s own tissues, there is nothing that can be done to get it to “turn off” or stop the attack. Current conventional treatment is focused on slowing inflammation, preserving organs, and managing symptoms. At best, this treatment has you barely putting a dent in your symptoms while creating a whole lot of side effects.
Patients going through this experience often find themselves frustrated. Some are told there is nothing that can be done, finding themselves with mild but irritating symptoms that don’t warrant powerful medications. Others find themselves on immunosuppressants and then have to suffer or worry about side effects like infection or cancer. Those with even more serious and life-threatening flares or conditions may find themselves facing surgical intervention, although this is not typical.
The current approach to managing autoimmune disease isn’t as hopeless as it seems! There is a burgeoning community of people reclaiming their health with a new approach. You will find some useful solutions integrating the best of conventional medicine with natural interventions throughout the rest of this book.
Common medical treatments for autoimmune diseases include:
● NONSTEROIDAL ANTI-INFLAMMATORIES (NSAIDS) —These are medications that reduce inflammation and relieve pain. They are available over-the-counter or by prescription and are used to treat muscle or joint stiffness and pain, aches, menstrual pain, and headaches. Many patients with joint pain, for example, use NSAIDs to manage it.
● HORMONE REPLACEMENT —In diseases that result in a loss of hormone (such as type 1 diabetes or Hashimoto’s thyroiditis), replacement hormone (like insulin or levothyroxine) is usually prescribed.
● CORTICOSTEROIDS —These medications suppress inflammation by mimicking the body’s own steroid hormones. They are prescribed in different forms and may be taken orally, topically, inhaled, and by injection. While effective, steroid medications can come with unpleasant side effects, like mood swings and weight gain.
● ANTIBIOTICS —Certain autoimmune conditions, such as ankylosing spondylitis, are linked to bacterial infections (in this case Klebsiella pneumoniae ), for which antibiotics may be prescribed.
● DISEASE-MODIFYING ANTIRHEUMATIC DRUGS (DMARDS) —In conditions with more serious symptoms, these medications are used to suppress the immune system, thereby calming the autoimmune process. They are available orally or by injection and usually take weeks to months to start working. They are not risk-free, as suppressing the immune system can cause a greater susceptibility to infection as well as certain types of cancer. Additionally, these medications can be hard on the liver and kidneys.
● BIOLOGIC DMARDS (ALSO CALLED TNF INHIBITORS) —These are newer types of DMARDs made to mimic the activity of compounds in your body (hence the name biologic). They are available by injection, tend to be quicker acting, and are often prescribed in addition to traditional DMARDs. They carry a similar side effect risk as other DMARDs, with possibly a higher risk for infection because of the specific part of the immune system they suppress.
● SURGERY —Although this is not as common, some autoimmune diseases can result in surgical intervention, such as Crohn’s disease, ulcerative colitis, and endometriosis.
In addition to these treatments specifically to control autoimmune disease, you may find yourself put on other medications to control the side effects. Not uncommon are medications that affect digestion, like antacids, proton-pump inhibitors, H2 blockers, laxatives, and antidiarrheals; antibiotics and antifungals to treat infections; and hormonal treatments.
In this book, we are not proposing diet and lifestyle interventions as a treatment in and of itself for autoimmune disease; rather, we are suggesting that there are things you as an autoimmune patient can do for yourself in addition to the medical treatment you receive from your practitioner or team (with their blessing, of course!). Many autoimmune patients have regained their health using a combination of natural approaches and conventional medicine. It’s not a matter of one or the other, but how everything works in concert to produce lasting wellness.
The following are some natural approaches that you may be able to incorporate in an effort to live healthier. We will be talking more in depth about each of these items, but brief descriptions are outlined below.
● DIET —Research has established a link between leaky gut (otherwise known as “intestinal permeability”) and all autoimmune diseases. A dietary approach that: (1) provides all of the nutrients needed for optimal healing and recovery and (2) eliminates all food allergies and sensitivities is best for long-term healing and management (see Chapter 3 ).
● SLEEP —The inability to fall asleep, poor-quality sleep, or interrupted sleep are issues that many with chronic illness suffer from. Because sleep is necessary for proper hormonal balance as well as repair and restoration of the body, troubleshooting these barriers to proper sleep can make a big difference (see Chapter 4 ).
● STRESS MANAGEMENT —Chronic stress is well known to cause autoimmune flares because of its impact on the body’s hormonal balance. Learning how to manage stress effectively and appropriately can help reduce this impact (see Chapter 5 ).
● EXERCISE —Improper movement or lack of movement can contribute negatively to autoimmune symptoms. It is important to engage in the right type of exercise at a difficulty level that is right for the circumstances (see Chapter 6 ).
● SUPPORT —Connecting with others and nature is an important part of the longterm management of chronic illness and autoimmune disease (see Chapter 7 ).
Organizing Medical Information
It is important for you to have all of your medical information and records on hand and organized so that they can be easily accessed. Those suffering from chronic illness tend to see a lot of new practitioners, and information can very easily get lost in the process. Having your own records on hand also gives you the opportunity to track changes over time. Follow these simple steps to make sure that you have your medical information organized so that it can best be used to guide your care.
1. Always request copies of your lab tests and documents while at your doctor’s office. You have a right to have a copy of this information for your records. It is possible to request duplicate files of any imaging (MRI, CT scan, x-ray) and store them on a hard drive for long-term safekeeping.
2. Keep a file of medical information in a convenient location at home. If your records are digital, print copies in case the record is accidentally lost or destroyed. Organize by date for easy access, with one large folder for each year filled with files for each month. You can also consider using one of the many health-tracking apps on your mobile phone that can store photographed records and information and track lab result changes over time.
3. If you have a condition like hypothyroidism, where the same lab tests are performed on a regular basis, consider making a spreadsheet on your computer for easy comparison of lab values and to track changes over time. Again, an app may be useful for long-term tracking.
4. When bringing your own medical records to a new doctor or appointment, make copies and leave the originals at home so that the practitioner can keep them for his or her records. This way you always keep a complete record at home.
Journaling is a tool that everyone can use to track progress while on a healing journey. The ways of keeping a journal are innumerable—you could use pen and paper, a word or text document on your computer, a spreadsheet, or an app on your smart-phone. More important than the method you use is the fact that you actually do it in a consistent way where the data can be used to inform future decisions.
● Energy
● Pain
● Bowel movements
● Exercise
● Mood
● Food/beverage intake (see Note )
● Notable symptoms
● Body measurements
● Digestion
● Medications
● Supplements
● Stress management
● Use a scale from 1 to 10 instead of adjectives (“energy—7” instead of “I had a good amount of energy today”), making your data more usable. This will also make it quicker for you to track results and make them easy to compare.
● In order to avoid being overwhelmed, only track what is important. Start with a few metrics and build as you get into the habit.
● Don’t beat yourself up if you get busy and forget a few days. Maintaining the record long-term is useful even if there are some gaps.
● Assess and track your bowel movements regularly to see if there are any changes due to your diet or lifestyle.
Once you are in the habit of regular tracking, set aside a time once a month to go over your journal and see if you can make any correlations. You may be able to put things together in a way you couldn’t while in the moment—maybe you get bloated consistently after eating a certain food, or you notice that you had a headache every day since introducing a new supplement. Tracking becomes incredibly important anytime you incorporate something new into your routine—like a medication, supplement, exercise, or a food reintroduction (which we will talk more about in Reintroductions ).
Even if you are just beginning your healing journey, learning how to track sooner rather than later is a great idea. You may feel as though tracking now is not going to do any good since you don’t have a plan, but it is always useful to have a baseline of how you were feeling before you started to make changes (just think how useful it will be for looking back on your progress!).
NOTE: We aren’t suggesting to obsessively count food intake or weigh yourself every day, even if one of your goals is weight loss. When tracking food, describing the foods you ate that day (i.e., salad with carrots, lettuce, beets, canned salmon, and avocado dressing) in enough detail to make connections about diet and symptoms is more than good enough. Even if you would like to lose weight, we recommend ditching the scale (that number doesn’t tell us anything about your value!) and relying on weekly body measurements instead. Actual calorie counting can be useful for up to a week just to see a ballpark range of how much food you are eating and to determine if all nutritional requirements are being met.
Each specific autoimmune disease has unpredictable outcomes. Some are aggressive and can be life-threatening, while others appear quickly, but spontaneously pass. Occasionally, autoimmune diseases can be both acute and chronic. Understanding which category your disease falls into can help you communicate better with your health-care providers.
Autoimmune disease is generally not an acute medical crisis, and it most likely manifests as a long-term, chronic illness. The course it will take in your body is uncertain and not something a doctor is capable of predicting for you. However, those of us with autoimmune disease can actively work to decrease factors that may worsen symptoms and strive to improve our prognosis. With a strong plan and health-care team in place, living well longterm is usually possible.
It is worth noting here that the Western health-care model is set up to excel in treatment of acute health crises, like a broken leg or a heart attack, but not necessarily of chronic illness—this is why personal advocacy is so important.
This first chapter was meant to do two things, convince you that knowledge is power on your autoimmune journey and provide you with some of the details that you should explore in order to get empowered. This basic information—what an autoimmune disease is, how to get a diagnosis, and the particulars to learn about your specific disease—is the foundation for transformation. Wellness is not in your doctor’s office or in a new pill; it is in your hands, and it starts with being informed.
