autoimmune registry

Disease Spotlight: Celiac Disease

Misconceptions abound in the autoimmune disease world, and celiac disease has more than its fair share!  Some of the questions celiac sufferers get:

“Is gluten sugar?”

 “One piece of bread won’t hurt you, right?”

“I mean, what would actually happen if you ate gluten?”

“Do you want the gluten-friendly menu?”

When misinformation abounds, patients can feel frustrated and misunderstood. One of our goals at Autoimmune Registry is to provide clear answers to questions to reduce the confusion surrounding autoimmune diseases like celiac disease. 

Celiac disease, sometimes spelled “coeliac”, is also known as celiac sprue, non-tropical sprue, sprue, and gluten enteropathy, is a malfunction of the immune system that only happens when a person eats gluten.  When gluten is traveling through the intestines, it causes the immune system to attack the “villi” – the microscopic “fingers” of the intestines that absorb food.  Over time, that attack can cause permanent damage to the intestines and a person can starve. Celiac disease is not the same as a gluten allergy, gluten intolerance, or gluten sensitivity, though a patient may be diagnosed with all 4 conditions before a correct diagnosis of celiac disease is made with a biopsy.  

Celiac disease symptoms can range from stomach upset and constipation to diarrhea to vomiting.  Without proper care, celiac sufferers can experience fatigue, migraines, joint pain, infertility, osteoporosis, anxiety, and depression.  Children with undiagnosed celiac disease can end up with short stature.  Some patients feel no symptoms at all initially — but the damage is still happening internally.

There is evidence that only people with certain genes get celiac disease, but not everyone with celiac has those genes, and only a small number of people with those genes actually gets celiac disease.  

There are several types of celiac disease: celiac disease, non-responsive celiac disease (NRCD) and refractory celiac, the most serious and severe of these three types.  All forms of celiac disease have the potential to be serious and life-altering. 

The only way to be sure if you have celiac diagnosis is to have a biopsy done by a doctor. There are also several blood tests that look for certain elevated antibodies. Celiac affects 1 in 100 people worldwide. About 1% of the United States’ population has celiac. For many patients, a correct diagnosis of celiac could take 6-10 years.

There are no medications specifically for celiac disease but there are medications to manage some of the symptoms. The only guaranteed way to manage celiac disease is to follow a strict, 100% gluten-free diet. That means eliminating all food that normally contains gluten, like most bread and cereal, as well as any foods that might have come into contact with gluten or that you might not expect to contain gluten, like medications, makeup, bath products, and more. Gluten can also be hidden in dyes, additives, preservatives, and both natural and artificial flavorings. Even soy sauce, licorice, and gummy bears may contain gluten. 

For patients with NRCD or refractory celiac, the gluten-free diet is not completely effective – the attack on the villi continues even without eating gluten. These forms of celiac disease are more damaging than “regular” celiac disease.

Researchers are working hard to find better ways to treat all forms of celiac disease. 

If you’re one of the 1% of Americans with celiac, you’re not alone. There are some great organizations, bloggers, and patient advocacy groups to help you along your journey. If you have celiac, you should see a gastroenterologist and a professional nutritionist or dietician, and also be sure to check out Beyond Celiac and the Celiac Disease Foundation.

If you live with celiac, we would love to hear your story. Feel free to email ashley@autoimmuneregistry.org if you wish to contribute a guest blog about life with celiac disease.

In the meantime check out our celiac fact sheet, here.

Disease Spotlight: Lupus

The next autoimmune illness that we are focusing on in our Disease Spotlight series is represented by a butterfly, due to its characteristic butterfly rash. Do you think you know which autoimmune disease it is?

If you guessed lupus, you are correct!

In lupus, the autoimmune system attacks many different body systems, including joints, skin, kidneys, blood cells, brain, heart, reproductive organs, and lungs.  Some types of lupus have special names. Discoid lupus primarily affects the skin. Lupus nephritis primarily affects the kidneys. There is also a type of lupus called drug-induced lupus, but often when people are referring to lupus, they are talking about SLE: systemic lupus erythematous. 

Lupus is difficult to diagnose, because as with many autoimmune diseases, its signs and symptoms often mimic those of other ailments, such as rheumatoid arthritis, Sjogren’s Syndrome, and scleroderma. 

Lupus can be an incredibly painful, debilitating, and life-altering condition with serious complications. Symptoms of lupus include fatigue, fever, joint pain, stiffness, a butterfly-shaped rash across cheeks and bridge of nose, sensitivity to light, Raynaud’s phenomenon, dry eyes, shortness of breath, chest pain, muscle pain, and “brain fog”. 

Scientists estimate that 1.5 million Americans live with some form of lupus, and patients are often diagnosed in their 20s or 30s. Lupus often affects more women than men and is more common among those from African-American and Asian heritage. 

Sun exposure, stress, infections, and poor diet can trigger lupus flare-ups. 

Lupus is diagnosed through a series of blood tests, physical exams, and imaging/scans.  Typically, rheumatologists specialize in lupus but other specialists are often consulted. There is no cure for lupus Aspirin, ibuprofen and, in severe cases, steroids, are used to treat the symptoms of lupus. Anti-malarial drugs, DMARDs, and immunosuppressive drugs are used to calm the immune system to limit its attack on the body’s healthy tissue. Patients are often referred to physical therapy as well.

Celebrities with lupus, including Selena Gomez, Toni Braxton, Lady Gaga, and Nick Cannon,  have increased the public awareness of lupus.

There are some great organizations, bloggers, and patient advocacy groups out there, too, to help you along your journey. Be sure to check out the Lupus Foundation of America, Arthritis Foundation, and the Lupus Research Alliance, among others.

If you live with SLE, we would love to hear your story. Feel free to email ashley@autoimmuneregistry.org if you wish to contribute a guest blog about life with lupus.




Disease Spotlight: Behçet's Disease

Have you ever heard of Behçet's disease? Probably not! It’s a rare autoimmune disease and is the subject of today’s Disease Spotlight -- a perfect choice for World Rare Disease Awareness Day!

Behçet's disease is marked by recurrent canker sores and genital ulcerations. But there are many other symptoms, some of which are not as obvious, including blurred vision, vision loss, sores on scrotum in men, sores on vulva in women, acne-like bumps on the skin, pain in joints, fever, headache, stiff neck, confusion, swollen joints, bleeding in stomach or intestines, and it can affect major organs like the kidneys and lungs.

When a disease affects so many different parts of the body doctors call it “multi-systemic”, a category that includes lupus and rheumatoid arthritis.

How can one disease affect so many different parts of the human body? Think of each of your body’s organs and systems as recipes. Many of these recipes share an ingredient, like cream. And if the cream is bad, every one of those recipes will taste bad.

In an autoimmune diseases like Behçet's, the immune system attacks a single protein in your body. Scientists studying Behçet's disease suspect that a protein called “carbonic anhydrase” is the protein being attacked. As a result, every organ or tissue that uses that protein is affected. This “carbonic anhydrase” protein is used to make blood vessels and other things.

The prevalence of Behçet's disease is highest among people of Middle Eastern and Japanese heritage. Estimates of prevalence vary dramatically, with estimates between 650 to 20,000 people in the US. We hope that our registry will help figure out the actual prevalence of Behçet's disease and other autoimmune diseases.

Behçet's disease most commonly affect patents between 20 and 40 years old, with an average onset of 25-30 years old. Patients who develop Behçet's before age 25 are more likely to involve eye disease. Men are more likely than women to develop more severe symptoms, such as blindness.

Despite being a rare disease, there are organizations and advocacy groups to help patients with Behçet's disease. Be sure to check out the American Behcet’s Disease Foundation, Global Genes and The Behçet's Blog. The Vasculitis Foundation also has information about Behçet's disease, here.

If you live with Behçet's disease, we would love to hear your story. Feel free to email ashley@autoimmuneregistry.org if you wish to contribute a guest blog about life with Behçet’s.

Be sure to check out our Behçet's Disease fact sheet, here.

Disease Spotlight: Sjögren's Syndrome

Autoimmune Registry strives to be a trusted source of information on autoimmune disease for patients, doctors and researchers.  Our Autoimmune Diseases List is the most complete list available. The list includes every suspected autoimmune and autoimmune-related condition. Not all scientists or doctors agree on which of these diseases are really autoimmune, so we provide links to peer-reviewed papers that support inclusion on the list as well as an indication of how widely accepted the classification is.  There might never be agreement on which diseases are “officially” autoimmune, but we can provide the best data on the current science. Disease Spotlight blog posts like this one increase awareness about each disease.

Today we are featuring Sjögren's syndrome.  Pronounced SHOW-grins — it is also called sicca syndrome.  Symptoms include dry mouth and dry eyes, a burning or “gritty” sensation in the eyes, joint pain, joint stiffness, swollen joints, swollen salivary glands, rashes and dry skin, vaginal dryness and discomfort, persistent dry cough, and intractable fatigue. 

Living with Sjögren's can be physically and emotionally draining, and painful. Like other autoimmune diseases, the patient’s own body is attacking itself, destroying healthy cells, tissues, and organs. With Sjögren's, the immune system attacks and destroys the glands that produce tears and saliva. In some cases, sweat glands and other mucosa or body parts (like the joints) are affected. 

The symptoms of Sjögren’s may be referred to by healthcare providers as keratoconjunctivitis sicca.  Not everyone with these symptoms has Sjögren's and testing is needed to confirm that autoimmunity is the cause. 

The typical age of onset for patients with Sjögren's is around 45 years of age, but it can happen at other ages as well.  Estimates of prevalence have fluctuated over the years. The most current estimate is that 2,128,000 individuals in the United States live with Sjögren's. 

Although some consider Sjögren's to be a rare disease, patients with Sjögren's are not alone and do have resources to which they can turn. We strive to be one of them. In fact, the President of the Autoimmune Registry, Aaron Abend, started this registry because of his own mother’s Sjögren's diagnosis. Other organizations that may be of help to Sjögren's patients include The Sjogren’s Syndrome Foundation, the Arthritis Foundation, and patient bloggers like the ones listed here on our Sjögren's Profile. 

If you live with Sjögren's, we would love to hear your story. Feel free to email ashley@autoimmuneregistry.org if you wish to contribute a guest blog about life with Sjögren's syndrome. 

In the meantime check out our Sjögren's fact sheet, here.