10 Things You Should Know About Celiac Disease

by | Updated: December 3rd, 2016 | Read time: 3 minutes

By Cheryl McEvoy, NFCA Director of Communications and New Media

September 13th is Celiac Awareness Day. It honors the birthday of Samuel Gee, a pediatrician who published the first clinical description of celiac disease in 1888. More than 120 years later, celiac disease is still largely undiagnosed. Of the estimated 3 million Americans who have celiac disease, 85 percent don’t know they have it.

To celebrate Celiac Awareness Day, share these important facts with your family and friends. You may help someone get diagnosed!

Celiac Woman Eating Gluten-Free Bread

1. Celiac disease affects 1 in 133 Americans. That’s more common than Crohn’s disease, multiple sclerosis, rheumatoid arthritis and Type 1 diabetes.

2. Celiac disease symptoms can be elusive. You may associate celiac disease with gastrointestinal issues, but did you know that migraines, fatigue and joint pain could also be signs of celiac disease? In fact, upon getting diagnosed with celiac disease, many people say they didn’t even notice their symptoms or simply passed them off as part of their “normal” life.

3. Undiagnosed celiac disease can cause reproductive health problems. Among other long-term effects, celiac disease has been associated with menstrual irregularities, unexplained infertility and poor birth outcomes.

4. Celiac disease is genetic.
Having a family member with celiac disease increases your risk of developing the disease. If you have celiac disease, encourage your family members to get tested, even if they don’t have any symptoms.

5. Celiac disease can develop at any age. The condition was once considered a childhood disease, but now doctors are diagnosing celiac disease in people well into their 50s, 60s and 70s.

6. You must be eating gluten to get an accurate test result. It may seem counterintuitive, but if you suspect that you have celiac disease, you should continue eating gluten until you complete testing. If you go gluten-free before getting tested for celiac disease, it could affect the accuracy of results.

7. It can take a long time to get diagnosed. An average of 6-10 years, according to Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconess Medical Center. While it may seem like everyone is talking about celiac disease, it is still overlooked in exam rooms. Fortunately, resources like  NFCA’s free Celiac CME  are teaching primary care providers how to detect, diagnose and manage celiac disease.

8. Celiac disease is on the rise. A 2009 Mayo Clinic study found that the celiac disease rate quadrupled in 50 years. There are many theories as to what is causing this increase, but one thing is clear: Greater awareness can help these individuals get diagnosed.

9. For people with celiac disease, the gluten-free diet isn’t a choice; it’s a necessity. Celiac disease requires a strict, lifelong gluten-free diet. A crumb of gluten is enough to trigger a reaction and cause damage to the intestine. So, when they ask if there’s gluten in that gravy, they’re not being picky; they’re protecting their health

10. The gluten-free diet isn’t a weight loss plan. In fact, many people gain weight on the gluten-free diet. Sometimes, it’s because their body is finally absorbing the nutrients it needs. Other times, it’s because they’re choosing gluten-free foods that are higher in calories, fat and sugar than the food they previously ate.

If you suspect you may have celiac disease, take the Celiac Disease Symptoms Checklist.