What is lupus?

If you don’t know me well, you would not know that I battled an autoimmune condition for many years. And ultimately recovered into a state of vibrant health.

Yeah me!

I understand how scary and debilitating it all can be. I followed all of my doctors recommendations and treatments for many years, which only resulted in me getting much, much sicker. Then out of sheer fear for my future and complete desperation, I jumped online and starting looking for solutions that could possibly relieve my terrible symptoms.

Then one totally miraculous morning, a friend who knew what kind of struggle I was going through, handed me a handwritten note on a torn scrap of paper. It was the name of, what I later found out to be, an anti inflammatory diet.

That single moment transformed my health and looking back on it, I know that it saved my life.

My greatest reward is the knowledge that I can give another human being with autoimmune disease hope and a solid road to follow in achieving their own version of vibrant health.

We will get to that yummy stuff later.

In my pursuit to start sharing what I had found out, through a personal blog, about the benefits of an anti inflammatory diet; I decided to research what the top autoimmune diseases were in the US. Meaning, how many times did a person get on Google or another search engine and search for information relating to a particular autoimmune disease.

And believe me, I know all about those online searches seeking an answer to all your autoimmune struggles.

Looking desperately for something you may have missed…

Well, I was completely astonished when Lupus came up as the number one search for autoimmune disease. More than 670,000 searches are made each month in the US and more than 1.8 million searches are made in the world each month.

This blew me away! That is a lot of suffering people.

Then it struck me, I’ve never heard of Lupus. What the heck is Lupus? Wait! I vaguely recalled Selena Gomez announcing that she had some kind of a disease…maybe Lupus…and was getting a kidney transplant.

I looked up Lupus after the shock factor wore off from my research and found out that it actually affects between 1.5 to 2 million Americans. That’s according to the Lupus Foundation of America.

Anybody else think that that sounds devastating?!

Well from what I found out, it is!

Let’s not waste any time, let’s get right into the meat and potatoes of Lupus disease.

Lupus is a chronic disease that is caused when the body’s immune system goes overboard and starts attacking its own healthy tissue. That definitely makes it an autoimmune disease in my book and to the medical community at large.

How does your body go overboard?

Let’s say you are out jogging, you trip, then fall down hard. Ouch! You wind up with a big scratch across your leg. Here’s the good news. Your body is programmed to spring into action in order to protect and heal itself.

Perfect! I love that the human body is self healing.

In order to heal that nasty scratch your body sends out its troops (white blood cells) to seal off the zone and eat up any bacteria or foreign material. The result: the area turns red, the bleeding stops, and the scratch seals over.

Bravo! That’s what’s supposed to happen.

But let’s say, your body gets irritated or is invaded by a source inside you. And this irritation or invasion is super persistent and decides to set up camp.

Because your body cannot seal the initial injury site to begin to heal like usual; your body, in a misguided effort to protect itself, can launch itself into overboard mode and start attacking your normal tissue.

Not ideal for sure.

There is more to this reaction scientifically, but the main thing to note is that your body, during what can be a long battle, actually creates a team of special forces designed specifically to attack your healthy tissue.

In Lupus, the medical community has labeled these special forces antinuclear antibodies or ANA for short.

When this type of persistent attack occurs, it can be the beginning of a chronic autoimmune disease brought about by chronic inflammation.

This type of chronic inflammation is the cause of many diseases.

What is lupus? Summary:

• Lupus is definitely NOT contagious
• Lupus doesn’t just have one speed. It can range from mild to life threatening.
• When people say Lupus, they are mostly referring to  Systemic Lupus Erythematosus or SLE. It’s the most common type.
• Neonatal, Discoid (cutaneous), and drug induced are the other less common types of lupus. Oh and cutaneous in english means affecting the skin.
• Approximately 5 million people worldwide are suffering from one of the types of lupus.
• Women represent the greatest number of people affected by lupus. More than 90%!
• An estimated 72% of Americans between the ages of 18-34 have never even heard of lupus. Lupus occurs mainly between 15-45 years of age.
• The medical community mostly commonly believes that lupus is the result of environmental factors and potentially a person’s genetics.
• Doctor prescribed medications and medical treatments do not cure lupus, but can control lupus symptoms.
• Anti inflammation diets like Paleo, GAPS, and SCD, according to some lupus sufferers, have provided significant relief when followed 100%.

Your entire body can be under attack when lupus rears its ugly head. Including your skin, heart, blood, muscle and joints, lungs, kidneys, mouth, nose and other internal organs.

Lupus disease occurs in a series of flare-ups and remissions. Meaning that the any of the above parts of your body could be under attack for a period of time before the attack subsides for a period of time. This can be an ongoing cycle for some.

What causes lupus disease?

The medical community does not know the exact cause of Lupus disease.

Some medical experts think that a combination of things could be the cause. Mainly things like your environment, hormones or even your genetics.Environment triggers can be chemical or natural in composition.

1. Smoking
2. Infections (one that keeps coming up is Epstein-Barr virus)
3. UVB rays from the sun
4. Ultraviolet rays from fluorescent bulbs like tanning beds
5. Silica dust exposure found in agricultural/industrial areas
6. Prescription drugs
   1. Sulfa drugs like Bactrim, Septra, Gantrisin, Orinase, and Azulfidine (these are all drug brand names)
   2. Minocin
   3. Antibiotic drugs like Penicillin, Amoxil, Ampicillin, Cloxapen
7. Leaky Gut Syndrome, according to some expert Naturopaths

Hormones inside your body communicate and direct cells and organs to do specific operations.

1. Estrogen is being evaluated as a potential lupus disease contributing hormone because more than 90% of people with the disease are women.

Genetics are thought to be a contributor but studies have been inconclusive. They have not identified a specific gene causing the disease.

Types of Lupus

The Five identified types of lupus disease:

1. Systemic lupus erythematosus (SLE)
2. Subacute cutaneous lupus erythematosus
3. Discoid lupus erythematosus (DLE)
4. Neonatal lupus
5. Drug induced lupus

Systemic lupus erythematosus (SLE) is the most common. It also can be most severe because the word systemic means that it can affect any part of your body, including your lungs, kidneys, blood, skin and joints and your heart. There are really no organs that are exempt from lupus disease. SLE can develop at any age but mainly affects people aged 15-45. Incredibly, 9 out of 10 people affected with lupus disease are women. The health problems, or chronic inflammation associated with lupus can be mild to life threatening. This type of the disease also follows the cycle of flare ups and remissions. The disease is active for a period of time then goes dormant for a period of time. This cycle can repeat itself for some lupus sufferers.

Subacute cutaneous lupus erythematosus is a type of lupus disease that presents in non scarring lesions on the surfaces of the skin that are exposed to sunlight.

Discoid lupus erythematosus (DLE) is another type that also affects the skin. This type is more like a chronic rash than a lesion. It is red and raised and appears on the scalp, neck or face. This type is external on the body rather than being internal. A very small percentage of people with DLE (less than 10%) will progress into SLE.

Some women with this type of lupus have said pure mineral makeup has been a real blessing to cover and hide their chronic rash without adding additional inflammation and irritation.

You may want to check that out.

Neonatal lupus is a very rare type of lupus disease that affects an unborn or newborn baby. The baby can suffer from liver problems, skin rash, low blood counts and in severe instances congenital heart block. From what I’ve read though, it is an extremely rare occurrence for a mother with SLE, or Sjogren’s Syndrome to pass along the disease through autoantibodies. But, if you have lupus disease and are pregnant, or thinking about becoming pregnant, you should definitely share your concerns with your doctor. Cause well, I’m no doctor…only a very concerned citizen.

Drug induced lupus is a type of lupus that is triggered by a prescription medication. Although the symptoms follow closely with SLE, unlike true SLE, the symptoms typically go away after the patient stops taking the medicine. There are approximately 400 drugs that can trigger this type of lupus. Examples of the types of prescription drugs that can set off this type of lupus, are contraceptive pills, antibiotics and antifungals, thyroid medication, anti seizure medication and high blood pressure medication.

Risk Factors for Lupus

The risk of your body falling out of balance and into a state of disease like Lupus, can be associated with your family history, gender, age and even your race. Two things the medical community knows for sure is that lupus is neither a sexually transmitted disease, nor is it contagious.

When scientists studied relatives of people with lupus they concluded that approximately 4-8% of first degree or second degree relatives are at risk for developing lupus.

Out of 10 people diagnosed with lupus, 9 of them are women. So, gender is definitely playing a role here. Before puberty strikes, boys and girls are diagnosed at an equal rate.

Although scientists have discovered that you can develop lupus at any age, the largest segment of the population affected are between the ages of 15-45. Around 15% of those diagnosed showed lupus symptoms before the age of 18.

Native Americans, African Americans, Hispanic/Latino Americans, Asian American, Native Hawaiians, Pacific Islanders are all races in which lupus disease occurs more commonly, develops earlier and tends to have more severe symptoms.

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Symptoms of Lupus

Lupus can create a variety of symptoms, create a lot of internal inflammation, and negatively impact entire organ systems.

The most common symptoms you could experience are below.

• Chest pain when breathing deeply
• Confusion
• Fatigue
• Fevers
• Hair loss
• Headaches
• Painful or swollen joints
• Pale or purple toned toes or fingers when exposed to cold or stress (Raynaud’s phenomenon)
• Skin lesions
• Skin rashes
• Swollen glands
• Swollen area around the eyes
• Swollen legs (edema)

Inflammation from lupus disease can attack a variety of different areas in your body. Your doctor may have identified any of the following inflamed organ systems.

• Arthritis
• Anemia
• Abnormal blood cells
• Brain
• Endocarditis
• Kidney problems
• Leukopenia
• Myocarditis
• Oral Ulcers
• Pleuritis
• Pericarditis
• Psychosis
• Rash
• Thrombocytopenia
• Seizures
• Vasculitis

Diagnosis of Lupus

Your doctor may find it problematic to diagnose you with Lupus because the symptoms can be similar to other diseases.

It is super important that you, as a patient, communicate very well with your doctor and be as accurate as possible about the types and frequency of the symptoms you are experiencing.

And of course, the doctor you are seeing must be capable of listening well and accurately interpreting your symptoms against their knowledge base and awareness of Lupus.

Your doctor will take an accurate medical history, do a physical examination and request a variety of laboratory tests. Then he/she will weigh the information and results against other potential diseases that could mimic Lupus, or possibly return with a positive diagnosis of Lupus.

My research suggests that blood tests are the most important determining factor because they can identify certain autoantibodies that are often present in a person with Lupus. One of those types of autoantibodies is called antinuclear antibody or ANA.

ANA is found in approximately 98% of patients with Lupus. But the doctor cannot stop there because there are other things that can cause an ANA positive test result. For example, Infections or other autoimmune diseases could also cause you to test positive.

Lupus Diagnostic Tool Kit

1. Complete medical history
2. Complete physical exam
3. Laboratory tests
   1. Blood count (CBC)
   2. Erythrocyte sedimentation rate (ESR)
   3. Urinalysis
   4. Blood chemistries
   5. Complement levels
   6. ANA and other autoantibody tests
4. Skin biopsy
5. Kidney biopsy

ANA Positive Blood Test

Okay, let’s say you complete all the tests and the ANA blood test comes back positive.

What next?

Additional blood tests must be done to help your doctor confirm Lupus as the diagnosis. The doctor is most likely going to order a full ANA Panel blood test looking for additional antibodies. You may have a different autoimmune disease depending on that test result.

ANA Panel tests for the following antibodies:

• Anti-double-stranded DNA
• Anti-histone
• Anti-phospholipid
• Anti-La/SSB and Anti-Ro/SSA
• Anti-Smith
• Anti-U1RNP

Those sound pretty scientific. So let’s unwrap these a bit and look at each one separately.

Anti-double-stranded DNA (anti-dsDNA): This type of antibody is found in about 30% of patients diagnosed with Lupus. This type of antibody may also suggest that you have Lupus Nephritis. That is Lupus that affects your kidneys. This sounds like it can be pretty serious.

Anti-La/SSB and Anti-Ro/SSA: These types of antibodies are found about 30-40% of the time in patients with Lupus and Sjogren’s Syndrome. You can test negative for ANA, but test positive for these antibodies. Women that have tested positive for these antibodies, then give birth, can pass along neonatal Lupus to their babies. If you are pregnant, or thinking about becoming pregnant, you definitely should ask your doctor to test you for these antibodies and have them go over the risks involved.

Anti-phospholipid: This type of antibody is found in about 60% of people diagnosed with Lupus. This kind is directed at your phospholipids and require preventative care and monitoring for conditions like blood clots, miscarriages, or even preterm birth.

Anti-histone: This type can show up but not be a conclusive test to diagnose Lupus. They are not specific to Lupus and are often drug-induced antibodies.

Anti-Smith: This type shows up in about 20% of people diagnosed with Lupus. They are directed at your Sm (which is a ribonucleoprotein that is found in your cell’s nucleus).

Anti-U1RNP: This type is found along with the anti-smith antibody in people with Lupus about 25% of the time. It can also cause a couple of things like a specific type of arthritis that can cause hand deformity (Jaccoud’s arthropathy), or scleroderma.

Complement Test

You guessed it, another blood test. This specific test checks the level of proteins that are consumed in your blood during your body’s inflammatory process. Of course, your genetics could play a role here by making you more predisposed to having a different rate of protein consumption.

Urine Test

Yup! You’re gonna have to pee in a cup. At the doctor’s office of course. And we’ve all been there.

Here’s why this test is so important, your doctor needs to identify and monitor any possible effects that could be occurring with your kidneys.

Included in your urine test:

• Proteinuria and Glomerular Filtration Rate: 24 hour urine collection period that tests how effectively your kidneys are filtering your blood to get rid of waste products
• Creatinine (protein) Ratio: One time collection sample that measures your protein loss which is an indicator of kidney function
• Urinalysis: Looking for kidney disease specifically by the identifying the presence of cellular casts, protein, red blood cells and white blood cells
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11 Common Criteria for Lupus

1. Butterfly shaped rash across the face (Malar rash)
2. Raised red patches (Discoid rash)
3. Skin rash that appears when exposed to sunlight (photosensitivity)
4. Ulcers in the mouth or nose that are typically painless
5. Inflammation of the lining around your heart (pericarditis) or around your lungs (pleuritis)
6. Arthritis that does not destroy the bones around your inflamed joints

Treatment for Lupus

Your doctor has three main goals:

1. Prevent a flare up
2. Treat your flare up when one occurs
3. Reduce damage to your body

Keep in mind that you may have multiple doctor’s involved in your care now that you’ve been diagnosed. Each could specialize in a different field of medicine depending on your symptoms and the severity of your disease.

The main thing your doctor will do is prescribe pharmaceutical drugs to help reduce your symptoms and make life more manageable. Double blind studies have been done and paid for by the pharmaceutical companies that manufacture your prescription drugs and none have been proven to cure Lupus. They are specifically designed to treat certain symptoms.

Pharmaceutical companies have never done any double blind studies on special diets, or supplements. So, your doctor will let you know that there is no medically documented cure for Lupus.

But, like I said before I battled an autoimmune disease. And I won!

So understand that there is HOPE!

If you’ve been curious to hear about that yummy tidbit that I promised earlier all through the reading of this blog entry. And bravo to you for getting this far! Then here it is…

The words written on the torn off piece of scrap paper were…Specific Carbohydrate Diet (SCD).

There it is, the three words that saved my life. I’m going to talk more about the SCD diet in my next blog entry so we have time to get into the details of why and how it worked so powerfully for me.

I’m not here to sell you any program or diet plan. I was blessed enough to have somebody share the SCD diet strategy that saved my life at no cost and all I want to do today is pay it forward.

Hope to see you next time!

If you have any questions, or comments for me. Please leave them below. I’m happy to help in any way that I am able.

Many heartfelt blessings,

Cheryl