Celiac Disease…Are you 1 in 133?

May is Celiac Disease Awareness Month. Celiac disease is a genetic autoimmune disordered triggered by eating gluten, the protein found in wheat, rye and barley. When someone has celiac, ingesting gluten causes the immune system to respond and damage the villi of the small intestine. Villi are responsible for absorbing nutrients from food through the walls of the small intestine into the bloodstream. When villi are damaged and not working properly, a person becomes malnourished, no matter how much food one eats.

Celiac disease is genetic, meaning it runs in families.  Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

In the past few years, celiac disease has gotten a lot more attention and the gluten free industry has exploded. Many people, including health care professionals, have brushed the gluten free diet off as a fad, but it should be taken much more seriously. It is estimated that 1 in 133 Americans, or about 1% of the population, has celiac disease. In individuals who have a first-degree relative—a parent, sibling, or child—diagnosed with celiac disease, the occurrence rate may be as high as 1 in 22. 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions. Celiac disease goes undiagnosed or is misdiagnosed often because there are at least 300 documented symptoms and some people have no symptoms at all.

Symptoms of Celiac Disease

Great infographic from the Gluten Dude.com

The most common symptoms include:

  • bloating, gas and/or abdominal pain, IBS
  • hard to flush, bulky or loose stools
  • diarrhea or constipation
  • pale, foul-smelling, or fatty stools
  • fatigue
  • anemia
  • itchy skin rash
  • Dermatitis herpetiformis
  • tingling or numbness in hands and feet
  • discolored teeth or loss of enamel
  • canker sores
  • bone or joint pain
  • irritability or behavior changes
  • anxiety or depression
  • significant unexplained weight loss
  • poor weight gain
  • delayed growth/failure to thrive in children
  • missed menstrual periods
  • infertility or frequent miscarriages
  • fractures or thin bones, osteoporosis
  • migraines
  • seizures

Symptoms vary depending on a person’s age and the degree of damage to the small intestine. Celiac disease can also have no symptoms at all, leading many adults to have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications.

If you think you might have celiac, you can use this interactive checklist to identify your symptoms and check a print off to discuss with your doctor. http://www.celiaccentral.org/disease-symptoms-checklist/

Related Conditions

In addition to having several symptoms, celiac disease is also closely related to a number of other health conditions and autoimmune disorders. The following is a list of related disorders and the estimated percentage of patients with the disorder that have celiac.

  • Type 1 diabetes – 3-8%
  • Autoimmune thyroid disease — It has been shown in studies that the prevalence of celiac disease in patients with autoimmune thyroid disease is 4-15 times greater than that in the general population. 3.3-4.8% with Hashimotos thyroiditis and 4.5% with Grave’s disease. Stay tuned for an upcoming blog post dedicated to this connection alone.
  • Autoimmune liver disease. Celiac disease has been found in 5-10% of patients with liver diseases including autoimmune hepatitis, primary biliary cirrhosis, autoimmune cholangitis and primary sclerosing cholangitis.
  • Sjögren’s syndrome – 4.5-15%
  • Turner syndrome – 2-8%
  • Williams syndrome – 9.6%
  • Down syndrome – 5-10%
  • Juvenille idiopathic arthritis – 1.5% – 6.6%
  • Rheumatoid arthritis
  • Addison’s disease

Testing and Diagnosis

Blood Test

The first step is blood testing. Your doctor can order tests to measure you body’s response to gluten. Individuals with celiac with have higher than normal levels of specific autoantibodies—proteins that react against the body’s own cells or tissues—in their blood. These specific antibodies are anti-tissue transglutaminase antibodies (tTGA) and anti-endomysium antibodies (EMA). The blood tests will measure total IgA, IgA-tTg and IgA-EMA, high levels will indicate a positive celiac test. A person needs to be consuming gluten regularly at the time of testing for the results to be accurate.

Intestinal Biopsy

Blood tests are simple and helpful in diagnosing celiac disease, but they are not always accurate. False negatives and false positives are possible, so an endoscopy is needed to take a biopsy of the small intestine. The doctor will take several small samples, which are studied under a microscope to look for damage and inflammation due to celiac disease. It is recommended that the doctor take at least 4 duodenal samples, including at least 1 from the duodenal bulb, in order to obtain an accurate diagnosis.


The only treatment for celiac disease is a completely gluten-free diet.  Eating just a small amount of gluten can damage the intestine. A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale and khorasan), rye, and barley. This means eliminating or finding substitutions for things like breads, pastas, and baked goods. There are many good substitutions like brown rice pasta, and baked goods made with flours from other grains, beans and nuts. I like to encouraged by patients to focus mostly on naturally gluten free foods like rice, potatoes, starchy vegetables, quinoa and other grains to replace the gluten-containing foods in their diets. Plain meats, fish, eggs, fruit and vegetables are all naturally gluten free. Working with a Registered Dietitian is the best way to ensure you are following a well-balanced, completely gluten free diet.

For more on celiac disease go to:

Celiac Central

National Institute of Diabetes and Digestive and Kidney Diseases – Celiac Disease

Celiac Disease Foundation


Stay tuned for more on celiac disease and gluten free diets