The Autoimmune Wellness Handbook

CHAPTER 1

Inform

"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.

WHAT IS AUTOIMMUNE DISEASE?

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.

WHAT TYPES OF AUTOIMMUNE DISEASES ARE THERE?

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.

WHAT ARE THE RISKS FOR AND CAUSES OF AUTOIMMUNE DISEASE?

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.

DOES HAVING ONE AUTOIMMUNE DISEASE PUT YOU AT RISK FOR DEVELOPING OTHERS?

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.

List of Confirmed Autoimmune, Suspected Autoimmune, and Autoimmune-Related Conditions

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

Inclusion body myositis (IBM)

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

SEEKING DIAGNOSIS

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.