Ten to twenty years ago, autoimmune diseases were not that common. I remember not even knowing what I was being diagnosed with back in 2008. Unfortunately, the prevalence of these diseases is on the rise. It is estimated that 20% of the U.S. population, or 50 million people, have an autoimmune disease. Getting a diagnosis is the first step in managing your disease. However, this can be super challenging. I’m going to walk you through how you can go about getting a proper diagnosis, why it’s so difficult, and what you can do if you are feeling symptoms but not getting answers.
Why is getting a diagnosis so hard?
Getting an autoimmune diagnosis can take months to even years to get a definitive answer. Many times, people experience symptoms years before any disease markers show up in blood tests. The main issue lies in the fact that there is no one single test to detect an autoimmune disease. Plus, many of the symptoms of autoimmune diseases can mimic other diseases, and not all diseases present with the same symptoms and characteristics.
For most people, autoimmune diseases are very slow to progress. Once the immune system becomes dysregulated and starts to not function properly, it could take months or even years for symptoms to show up. In fact, it takes an average of 4.6 years to get a proper diagnosis for an autoimmune disease. For some diseases, it can take up to a decade or more for symptoms to turn into diagnosable diseases.
Lastly, the medical community often dismisses or ignores symptom complaints from those seeking help. In a study by the American Autoimmune Related Disease Association (AARDA), 46% of patients were initially told they were chronic complainers or too concerned about their health when seeking help with underlying symptoms. In a study of lupus patients, 76% of them reported receiving a misdiagnosis of their disease. Of those who received a misdiagnosis, 47% were diagnosed with a mental health condition, with health anxiety and hypochondriac being the most common misdiagnosis.
What testing is done to diagnose an autoimmune disease?
Each autoimmune disease has specific diagnostic criteria that help to correctly diagnose each disease. In most cases, testing for antibodies is a convenient way to figure out if an autoimmune disease is present. However, many times antibodies can be positive before any symptoms occur. In addition, symptoms can occur without any antibodies present. This is called “seronegative” autoimmune disease.
There are a few other factors besides antibodies that practitioners will look at to help diagnose an autoimmune disease. These include:
- Symptoms
- Blood inflammatory markers
- Immune markers (like white blood cells)
- Organ function tests
- Tissue biopsies
- Scans and imaging
If you are experiencing symptoms and doctors are not being thorough, here are some tests that you can ask for:
- If you have joint pain, neuromuscular or balance issues, dry eyes or mouth, and/or a butterfly rash on your face – ask for C-reactive protein (CRP), Sedimentation Rate (ESR), Antinuclear antibodies (ANA), Rheumatoid factor (RF) tests
- If you have weight gain or loss, fatigue, or anxious energy, ask for a FULL thyroid panel and a FULL iron panel, including ferritin
- If you have gastrointestinal issues, checking iron, folate, vitamin D and vitamin B12 may help uncover absorption issues found in inflammatory bowel disease and celiac disease. A fecal calprotectin test may also be helpful in uncovering intestinal inflammation.
It’s important to note that these (with the exception of calprotectin), are all blood tests. Additional scans, imaging and other testing may be required to properly diagnose a disease.
Why is a correct diagnosis important?
Getting a correct diagnosis is really important for your treatment plan. Since conventional doctors are siloed into specialties, knowing which autoimmune disease you have connects you with the correct specialist to figure out the most effective plan of action. This may include medication, additional therapies, and monitoring for ongoing disease progression.
The right diagnosis helps narrow down your research and education on your disease. Then you will know what to expect and when to speak up when you feel like your treatment plan isn’t cutting it. Lastly, it connects you with others who are experiencing the same thing as you.
Getting an autoimmune diagnosis is very scary. Surrounding yourself with others in your same situation can provide an immense amount of support during this difficult time. It also allows you to explore alternative therapies to find the right mix of treatment options for you.
What should you do if you are in a gray area?
If you are still working on getting a diagnosis, there are a number of things you can start doing now to help alleviate some of your symptoms:
- Connect with an integrative or functional practitioner. Although autoimmune diseases are specific in nature, root causes and triggers are common. Addressing these early can help slow disease progression or even stop your disease from becoming a diagnosable one.
- Clean up your diet. What you eat plays a major role in calming down autoimmune disease symptoms. By figuring out your food triggers and focusing on nutrient-dense foods, you can start nourishing your body properly to prevent further damage to your immune system.
- Take a hard look at your life. Do you have a lot of stress in your day-to-day life? What about poor sleep quality? What does your toxin and environmental exposure look like on a daily basis? All of these can affect how you feel, and by addressing each one, you can help improve your symptoms.
Getting an autoimmune disease diagnosis can be both a blessing and a curse. Just know that whatever happens, there is a lot you can do to help your healing journey, whether or not you get a diagnosis tomorrow. Continue to advocate for yourself, find a doctor who will listen to you, and trust your instincts. The only person who knows you best is you.
If you need more help navigating nutrition and lifestyle, please contact me to learn more about how I can help. You can also follow me on Instagram, Facebook, and YouTube for more information about living with an autoimmune disease.
