Celiac disease is an autoimmune disease in which the body’s immune system inappropriately reacts to gluten, a protein found in wheat, rye and barley. While many people choose to avoid gluten, celiac disease, which affects about 1 out of every 100 people, is the primary reason that someone needs to avoid gluten. Here are four myths about celiac disease, and one bit of potential good news.
Myth: It’s OK to eat “ancient” einkorn wheat
Many people with nonceliac wheat sensitivity — they can’t tolerate gluten or other components in wheat, but celiac disease and wheat allergy have been ruled out — find they can eat einkorn wheat, an old form of wheat that has a simpler genetic makeup. Researchers are still studying this, but the bottom line is that einkorn still contains gluten, so it’s not appropriate for people with celiac disease.
Myth: Everyone with the genetic marker will develop celiac disease
If you test positive for the HLA-DQ2 or HLA-DQ8 genes, this means it’s possible for you to develop celiac disease. It doesn’t tell you if you currently have it, and it doesn’t guarantee that you will develop celiac disease in the future. For context, about 35% of people in the U.S. carry one of those genes, yet only 1% of people have celiac disease.
Testing for celiac disease starts with a blood test for the enzyme IgA tissue transglutaminase and a few other indicators while you are still consuming gluten — undergoing these tests while avoiding gluten can yield false results. If the results are positive, an intestinal biopsy can confirm the diagnosis.
Myth: Celiac disease symptoms are obvious
I’ve had many people tell me that they don’t tolerate gluten but “know” they don’t have celiac disease because their symptoms are mild or don’t include digestive distress. That’s a potentially dangerous assumption, given that many adults who have celiac disease don’t have intestinal symptoms. They may not even have obvious symptoms, and there’s a name for that: “silent” celiac disease.
With or without symptoms, trace amounts of gluten can cause intestinal damage in someone with celiac disease. This makes it difficult to absorb several vitamins and minerals, including vitamin B12, folic acid, iron and calcium, which can manifest as neurological symptoms such as “brain fog” and headaches, as well as anemia and osteoporosis. Someone with celiac disease who assumes they don’t have it may not be as careful as they need to be.
Myth: It’s OK to take a “gluten holiday”
If you have celiac disease, being “pretty good” about avoiding gluten isn’t good enough. The only treatment available for celiac disease at this time is 100% avoidance of gluten in all of its forms. Throwing caution to the wind during holidays, a special dinner out, vacations or when you’re simply tired of eating gluten-free — it’s expensive, can feel limiting, and all that sleuthing, label reading and triple checking is a lot of work — can lead to intestinal damage. Again, there’s no known safe level of gluten intake when someone has celiac disease.
The good news is that there are several potential drug therapies undergoing clinical trials. Some drugs focus on preventing the immune system from reacting to gluten, others help prevent damage to the intestinal lining, and others break up gluten into harmless fragments. Many are intended to be used in conjunction with a gluten-free diet, but may make it possible for people with celiac disease to be less obsessive about banishing every trace of gluten.