Celiac disease is an autoimmune disease, which means the body’s immune system mistakenly attacks itself when it encounters a perceived ‘threat’. In the case of celiac disease, this threat is gluten. Every time someone with celiac disease eats gluten, the immune system becomes hyperactive. This results in damage to the small intestine (where gluten is digested) and inflammation. This inflammation can affect many parts of the body, not just the digestive tract.
So, what is gluten?
Gluten is a protein naturally found in wheat, rye, barley and their derivatives. Gluten is also commonly used as a filler in condiments, deli meats, and even cosmetics.
Celiac Disease vs. Gluten Intolerance
While both of these disorders require the individual to avoid gluten, the conditions are quite different. Unlike celiac disease, gluten intolerance is not an autoimmune disease, nor is it a food allergy. Instead, it is a type of food hypersensitivity that can only be diagnosed after ruling out a wheat allergy and celiac disease.
How do I know if I have celiac disease?
An estimated 1 in 133 individuals have celiac disease, but many are undiagnosed1. Celiac disease cannot be diagnosed by symptoms alone. In fact, only a subset of individuals experiences digestive symptoms (e.g. bloating, cramping). Others do not have any symptoms (“silent celiac disease”). To further complicate matters, many who do have digestive symptoms after eating foods containing gluten may instead have irritable bowel syndrome (IBS) or another GI disorder.
To find out if you have celiac disease, you must undergo medical testing by a physician.
This often includes blood testing, genetic testing, and an upper endoscopy.
What happens if I don’t get tested?
If you have celiac disease, but do not follow a gluten free diet, then the damage to your small intestine will prevent absorption of key nutrients. This can lead to many different complications2:
Low Bone Density
Infertility and Miscarriage
Don’t follow a gluten free diet before you get tested.
This is VERY important. In order for medical tests to be accurate, you must be consuming gluten on a regular basis. Otherwise, you may have a false negative test. In addition, following a gluten free diet requires careful planning with the help of a registered dietitian. Avoiding gluten on your own without a medical reason can lead to an overly restrictive diet and poor nutrition.
I was diagnosed with celiac disease. Now what?
If you found out that you have celiac disease, don’t despair! While there is currently no cure for celiac disease, scientists are actively researching them. In the meantime, the treatment for celiac disease is to follow a strict gluten free diet. This means not only avoiding foods that contain gluten, but also foods that have come into contact with gluten (“cross-contact” or “cross-contamination”). For example, it is not enough to eat a gluten free pizza if that pizza was baked on the same surface as a wheat flour pizza.
After receiving a diagnosis from your physician, it is important to meet with a registered dietitian. This nutrition expert will make sure you are consuming all the nutrients your body needs while avoiding gluten. They can also help you identify foods that contain gluten and provide many recipes that are similar to the gluten-containing foods you ate before.
A. Fasano, I. Berti, T. Gerarduzzi et al. Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States. A Large Multicenter Study. Arch Intern Med. 2003;163(3):286-292.
Mayo Clinic. “Celiac Disease”. March 6, 2018. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
Sarah Andrus, MS, RD, LDN
Sarah is a clinical dietitian who specializes in GI nutrition. She received her Master’s in Nutrition Science and Policy from the Friedman School of Nutrition at Tufts University in Boston, MA. She then completed her clinical nutrition training at the National Institutes of Health in Bethesda, MD. She has extensive nutrition research experience, including weight management.