As gluten and the potential ill effects of its consumption gain purchase in our public conversation (a good trend) it has become important to parse out where facts end and speculation or myth begin. The environment in print and social media can be confusing for wellness minded individuals wanting to do their research. To help, here is a quick list of common myths about gluten tests to help you stay on the side of evidence.
Myth #1: Celiac disease (CD) does not run in families so genetic testing is not necessary.
Fact: For individuals diagnosed with celiac disease (CD), the entire family of first-degree relatives (parents, children, siblings) have a 1 in 22 chance of developing CD in their lifetime. A simple genetic test can identify family members who need regular screening for active celiac disease while allowing individuals who test negative to forgo such testing.
Myth #2: Symptoms plus positive genetic results are diagnostic of celiac disease.
Fact: Even if an individual is symptomatic and tests positive within the spectrum of genetic risk for CD, positive tTG antibody and/or small bowel biopsy test results are still necessary to properly diagnose celiac disease.
Myth #3: Genetic testing must be performed regularly to screen for celiac disease risk.
Fact: Genetic testing needs only be performed once in a lifetime to rule in, or rule out, celiac disease risk.
Myth #4: All celiac genetic tests can report the true negative Non-Celiac Genetics (NCG) result associated with less than 1% chance for developing celiac disease.
Fact: Only genetic tests (such as Gluten ID) which include all possible celiac genetic combinations of DQ 2.5, DQ8, DQ2.2, DQ7 can report accurate NCG Results.
Myth #5: You must be on a gluten containing diet for genetic testing to be accurate.
Fact: Genetic testing for celiac disease risk is an accurate, once-in-a-lifetime test regardless of whether or not gluten is being consumed in the diet.
Myth #6: tTG antibody blood testing only needs to be performed once and if negative, there is virtually no risk for developing celiac disease.
Fact: If genetics are positive for celiac risk (and an individual chooses to retain dietary gluten) then tTG antibody testing must be performed regularly to screen for celiac disease. If gluten is eliminated from the diet, then tTG tests will not be accurate. An added bonus to a gluten free diet means development of celiac disease is highly unlikely despite genetic risk.
Myth #7: When genetic results are negative (or low risk) and celiac-like symptoms are present, it is still a good idea to keep eating gluten.
Fact: Consuming gluten in the diet if it causes symptoms is never a good idea. For example, non-celiac gluten sensitivity is a condition gaining more attention in individuals with non-celiac or low risk celiac genetics but who still cannot tolerate gluten in their diet. If symptomatic on a gluten containing diet, try reducing or eliminating gluten to see if symptoms diminish or disappear.
Myth #8: Food sensitivity blood tests are an accurate way to test for celiac disease.
Fact: Food sensitivity blood tests can be informative about food groups triggering antibody responses in the bloodstream. However, these tests do not include results for tTG antibodies or genetic risk for celiac disease.
Myth #9: Celiacs need to test everything they eat for “hidden” gluten.
Fact: “Gluten free” labeling can be misleading and there are tests available for detecting hidden gluten content in food. However, a simpler, less expensive approach may be sticking with known, and reputable “gluten free” brands such as Simple Mills, King Arthur, Canyon Bakehouse, and Udi’s when choosing flour, pizzas, breads etc.
Myth #10: If genetic and antibody test results are positive for celiac disease, there is a pharmacological cure so it is fine to continue eating gluten containing foods.
Fact: While there is currently no pharmacological cure for celiac disease, a natural medicine called a “gluten free diet” has been shown to “cure” over 90% of individuals with CD. For individuals with positive celiac genetics whose immune systems recognize gluten and mount an abnormal antibody response, eliminating gluten from the diet will cure the disease for most sufferers.