Common Myths About Celiac Disease

Myth: Celiac disease is on the rise because today’s wheat is different than it used to be.

It’s true celiac disease is becoming more prevalent, but the reason why is still unclear. One theory is that modern wheat has been bred to contain higher amounts of gluten. However, according to the late Donald Kasarda, PhD, that theory falls flat. In 2013 he published a study revealing that wheat breeding was not to blame for the rise in celiac disease. Other factors, such as overall wheat consumption or an additive known as “vital wheat gluten,” are potential areas to explore in the future, but so far, no definitive links to changes in wheat have been identified.

It’s worth noting that the earliest evidence of celiac disease dates back to the first century AD. Celiac disease is not a new disease, but the treatment—a gluten-free diet—was only developed in the mid-20th century. If it seems like more people have celiac disease, it could partially be because doctors have better tools to diagnose and treat the disease. People with celiac disease are living longer!

Learn more about the history of celiac disease.

Myth: If you don’t have the same symptoms as a family member, you don’t have celiac disease.

Did you know there are over 250 symptoms associated with celiac disease? One person may have severe GI symptoms, another headaches, and some may have no symptoms at all. Celiac disease affects each person differently, even relatives.

Regardless of symptoms, first and second-degree relatives of someone with celiac disease have an increased risk of developing the condition.
(1 in 14 overall for first-degree relatives; 1 in 4 daughters, 1 in 16 sons, 1 in 7 sisters, 1 in 11 brothers, and 1 in 20 parents)

Celiac disease experts recommend family member testing as a proactive approach to diagnosis. Physicians familiar with celiac disease often suggest relatives get a blood test at the same time their family member is diagnosed, and then every two to three years afterward, or anytime potential symptoms emerge.

Because celiac disease can develop at any age, a relative could receive multiple negative test results, but then test positive years later.

Learn how to have an effective conversation with your family members about their genetic risk.

Myth: If I have celiac disease, I can still eat bread in Europe.

Italy, Spain, England, or Norway—insert any European country into the myth.

The truth is gluten is gluten, no matter where it’s originally from. If you have celiac disease, eating any type of wheat, barley, or rye bread products—including “ancient” species like einkorn, farro, or kamut—will cause damage to your small intestine.

Unless it’s specifically labeled as gluten-free, bread anywhere, in European countries or elsewhere, still contains gluten. Plenty of Europeans have celiac disease, and in fact, Italy has a higher prevalence of celiac disease than many other countries. Europeans with celiac disease avoid gluten in their own countries.

If anyone recommends you try the bread in Europe, you can confidently say, “No, thanks.”

Myth: People with celiac disease can still eat sourdough.

There has long been misinformation online about wheat-based, sourdough bread being safe for those with celiac disease and gluten sensitivity. This is not true.

While the natural bacteria in sourdough may make it easier to digest, and the fermentation process decreases the amount of gluten, it still does not reach 20 ppm (parts per million) or less of gluten, which is the threshold defined by the United States for gluten-free foods. It is important to note that even if someone with celiac disease doesn’t experience symptoms after eating sourdough bread made from wheat, damage may still be happening to the intestinal villi.

So skip traditional, gluten-containing sourdoughs. There are plenty of gluten-free alternatives today, made from gluten-free flours like millet, sorghum, or teff. Or, you can create your own gluten-free sourdough starter by following these instructions and using gluten-free flour for the starter and gluten-free ingredients for all of your sourdough baking!

Myths about the Gluten-Free Diet

Myth: If it says “Manufactured in a facility that also processes wheat,” it’s not safe for people with celiac disease.

The wording, “Manufactured in a facility that also processes wheat,” is what the FDA calls a voluntary allergen advisory statement. These are different from a “contains wheat” statement, which is required by law and means that the food definitely includes wheat. The voluntary warning means that the product is not made with those allergens, but there may be a risk of cross-contact in the manufacturing process. The statement can seem alarming, but in some cases, it may mean that the company is going above and beyond to let customers know about their processes. Voluntary statements do not mean the product absolutely contains the allergen.

If you find a product that is labeled gluten-free but bears a warning like this one, you can rest assured that the product must comply with the gluten-free labeling law—it legally must contain less than 20ppm of gluten. Even though products can have an allergen advisory statement for wheat, if they are also labeled gluten-free, the product must meet the requirements of the gluten-free labeling rule.

On the other hand, the absence of a voluntary advisory statement does not automatically mean a product is produced in a dedicated gluten-free facility.

If you’d like to investigate a product further, Beyond Celiac suggests visiting the product’s website or contacting the company directly to learn more about their manufacturing practices. It’s absolutely possible for a manufacturer to produce safe gluten-free food for people with celiac disease using shared equipment or a shared facility, as long as they have the proper sourcing, cleaning, storage, production and testing protocols in place to keep the food safe.

Myth: Gluten-free food contains zero gluten.

This seems like a simple expectation, but in reality, it’s nearly an impossible feat. Current methods for gluten detection can test down to 3 parts per million (ppm) at the lowest, with other, more reliable tests detecting as low as 5 ppm. Even if we are able to test for 0 ppm in the future, that level would be so stringent that it would likely be impossible for many manufacturers to reach—and those that do would potentially carry an even higher price tag.

Most importantly, researchers agree that most people with celiac disease can safely tolerate up to 20 ppm of gluten a day. Even so, many manufacturers test at lower levels so they can be accessible to more sensitive individuals.

Learn more about the FDA gluten-free labeling ruling.

Myth: You should only use gluten-free shampoo and cosmetics.

Though there is no harm in using them, research indicates gluten in shampoo and cosmetics is not a threat to those with celiac disease. People with celiac disease cannot get sick from simply touching gluten; it has to be ingested or enter the bloodstream through an open wound.

You may want to review ingredients in cosmetics that could easily be ingested, such as:

• Lip products, like chapstick, lipstick, or lip gloss that could be accidentally swallowed
• Shampoos for young children who may accidentally ingest it
• Or face/hand products that may then touch your mouth. A safe alternative is to make sure you wash your hands after applying.

If you have a reaction to a cosmetic or toiletry, it is worth looking into allergic reactions to other ingredients in the product.

Myth: If a restaurant has a gluten-free menu, they know how to serve people with celiac.

One day, we all hope to sit down to a gluten-free meal, no questions asked. Until then, we can’t safely take all gluten-free menus at face value.

Though we love to see a gluten-free menu, some restaurants have introduced gluten-free options without doing their due diligence to learn and understand what it means to serve a gluten-free meal that’s safe for people requiring a medically necessary gluten-free diet. Many do not understand the risks of cross-contamination or incorrectly believe that high heat can “kill” gluten.

The good news is that just because a restaurant doesn’t have a gluten-free menu doesn’t mean you have to sit it out. Many restaurants can and will safely modify standard menu items to meet the needs of a person with celiac disease. The best thing you can do is call ahead and ask how they accommodate gluten-free guests.

Check out our resources on dining out with a strict gluten-free diet.

Myths About Non-Celiac Gluten Sensitivity (NCGS)

Myth: You can diagnose gluten sensitivity through a blood, saliva, or stool test.

There are many tests on the market claiming to diagnose gluten sensitivity, but it’s important to know that these tests have not been validated and are therefore not accepted by the scientific community.

Currently, no biomarkers (a specific indicator of disease) for gluten sensitivity have been identified, which means that gluten sensitivity remains a diagnosis of exclusion. In other words, the only way to confirm an NCGS diagnosis is through a process of elimination. A patient should test negative for celiac disease and wheat allergy, and then eliminate gluten under the supervision of a physician or a registered dietitian skilled in celiac disease management.

Unapproved tests, while they may be quicker, may lead to dietary restrictions or other unnecessary changes in a person’s life.

Learn more about non-celiac gluten sensitivity.

Learn More

Curious about a myth you didn’t see addressed? Check out our Fact vs Fiction PDF, celiac disease FAQs, and our gluten sensitivity FAQs.

As research continues, you can expect to see more myths busted in the future. Stay updated on the latest news in celiac disease and the gluten-free diet by subscribing to our research newsletter!