Celiac Disease: 14 Things You Need to Know

Top celiac experts separate myth from fact about the life-altering autoimmune disease.

Facts about celiac disease

“No thanks, I’m gluten-free” has become a staple phrase these days, but for about 1% of the population who has celiac disease, it’s not a fad, it’s a necessity. Having celiac means your body is mounting a quick-fire defense against gluten, which has ramifications on your health from head to toe. It’s not just digestive distress that can follow you around; long-term consequences of celiac disease can take shape, including an increased risk of some cancers. What’s more, celiac disease isn’t always a slam-dunk diagnosis. It can take a while—sometimes decades—for patients to know they have the disease, leaving many people undiagnosed for years.

Adding to the confusion is the fact that symptoms such as constipation, diarrhea, or abdominal bloating and pain can have many other explanations. Celiac also may not be your first suspicion if you suffer from nondescript signs, like fatigue and depression, which makes learning about the disease even more critical. Here’s what you need to know about celiac disease, whether you’ve just been diagnosed or suspect you may have it.

Celiac disease is an autoimmune disease–not an allergy

Celiac is an autoimmune disease triggered by the ingestion of gluten and other similar proteins found in wheat, rye, and barley among people with a genetic susceptibility to the disease, explains Stefano Guandalini, MD, founder and medical director of the University of Chicago Celiac Disease Center.

Celiac isn’t a food allergy, like the one people have with peanuts (allergies to wheat do exist, but mainly start in childhood and often disappear by adulthood, according to Food Allergy & Research Education). And it’s not an intolerance like lactose intolerance. Emphasizing the word “autoimmune” can clear up many misconceptions about the disease, says Daniel Leffler, MD, MS, director of clinical research at the Celiac Center at Beth Israel Deaconess Medical Center in Boston. Celiac disease is distinct from both allergies and intolerances, he says. “It’s more similar to other autoimmune conditions like type 1 diabetes or rheumatoid arthritis.”

Celiac disease also isn’t the same as the relatively new “non-celiac gluten sensitivity.” Doctors are still unpacking what this condition might mean, but there doesn’t appear to be any of the trademark GI damage of celiac disease with a sensitivity, says Dr. Guandalini.

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