Celiac Disease Fact vs. Fiction: Knowing How to Separate Myths from Facts

September 24, 2015

Celiac Disease Fact vs. Fiction: Knowing How to Separate Myths from Facts

With the help of Blogger Ambassadors, the National Foundation for Celiac Awareness (NFCA) is clearing up common misconceptions in the celiac disease community.

Celiac disease and gluten-free diet myths are unfortunately quite common on the internet. Sometimes, it can be difficult to figure out what statements are facts and which are fiction. Throughout September, the National Foundation for Celiac Awareness (NFCA) hosted a game of Celiac Disease Fact vs. Fiction, sponsored by Mission. We’ve covered lots of topics that are myths so you can be sure that you have the right information you need to manage this serious genetic autoimmune disease.

With the help of some of NFCA’s Blogger Ambassadors, we’re giving you advice on how to handle these myths in your day to day life.

Myth: It is never possible to safely eat gluten-free outside of the home.

Whether you’re staying close to home or traveling thousands of miles away, you can safely eat gluten-free away from home. Try either taking your own food along or finding a safe gluten-free restaurant or market. Preparing and packing your own food is the easiest option for many people, since you can always trust that your meal or snack will meet your needs.

Finding a market or restaurant that can provide a safe gluten-free meal doesn’t have to be difficult either. Try finding a handful of possible options, and always call the venue to inquire about its gluten-free options, ingredients and efforts to prevent cross-contact. If you can’t find an option that meets your needs, remember that in a pinch, you can also purchase your favorite gluten-free products on the road.

Myth: If a restaurant has a gluten-free menu, that automatically means they know how to safely prepare gluten-free food.

The popularity of the gluten-free diet means that many more gluten-free menus have appeared in restaurants around the US, but unfortunately, not all of these menus meet the needs of diners with celiac disease. Be sure to follow the dining tips from NFCA whenever you dine out, whether the restaurant claims to have a gluten-free menu or not. It’s important to call ahead, be detailed, be proactive and follow up afterwards to make sure you have a safe gluten-free dining experience.

Myth: Celiac disease isn’t that big of a deal.

That’s a scary statement! Sadly, the latest rage of “going gluten-free” for all of the vanity and fad reasons is damaging the need for taking safe gluten-free measures, including cross-contact issues. And it’s causing the public at large to dismiss our disease as a trivial “fad.”

We must not stray from the serious matter at hand: Many patients suffer from additional, related conditions that can come along with celiac disease. Celiac disease is a life-long disease that will take your time and energy and full attention to master. One must seek the assistance of a doctor who is an expert in celiac disease and a registered dietitian. It’s not just a matter of avoiding bread. In fact, 70% of people with celiac disease still have ongoing intestinal damage, despite best efforts to stay gluten-free. That shows just how serious celiac disease is.

Every patient should seek nutritional counseling as well, at least until they master the gluten-free diet. Vitamin deficiencies are a real threat. Some children diagnosed can have growth issues. Despite the proper diet, the long-term malabsorption takes its toll. Be sure to talk to your doctor about ongoing care to monitor your healing and to ensure you’re properly absorbing nutrients. Head here to learn more about specific tests you should be given after a diagnosis.

In adults, in addition to these deficiencies, threats include bone density issues and many other conditions. So, receiving the proper care from various sources is key to not only managing this lifestyle, but thriving despite being on a limited diet.

Myth: Gluten-reduced beers are safe for those with celiac disease.

The federal government does not allow gluten-reduced beers, such as Omission and Daura Damm Estrella, to be labeled “gluten-free” since barley malt is one of the ingredients used in the brewing process. Though the method of testing that the brewers of these beers use may result in readings of less than 20 parts per million (ppm) gluten (an amount deemed safe by celiac disease experts), that method is not appropriate for measuring fermented products. The brewers of these beers may only claim that the beers are “crafted to remove gluten” if that claim is made together with a qualifying statement that warns the consumer that the gluten content of the product cannot be determined and that the product may contain gluten.

Until a test is validated to ensure proper testing, NFCA strongly recommends that people with celiac disease stick to drinking beers that are brewed from a gluten-free grain rather than gluten-removed beers.

Myth: Family members of someone with celiac disease don’t need to be tested for celiac disease if they don’t have the same symptoms as the diagnosed person.

Dr. Alessio Fasano once referred to celiac disease as a “clinical chameleon.” That’s because there are numerous signs and symptoms that can often be confused with other conditions. While one person might have stomachaches another might have migraines, depression or anxiety. Some people might have no symptoms at all.

If I were speaking with a biological relative that did not think they were at risk for celiac disease, I would use NFCA’s Talk. Tell. Test. approach to explain to them that they should be screened. I would talk to them about celiac disease, tell them the facts (celiac disease is genetic, it’s a serious autoimmune disease, etc.) and then I would urge them to test.

Be sure to have a one-on-one conversation with your relative about their celiac disease risk. NFCA research showed that relatives most likely will not take action and get screened if information is simply shared with them online. This research also showed that generally, you only have one opportunity to talk to your relatives about their risk. Be sure to prepare what you’d like to say and arrange for a time to speak with your relative where they won’t feel pressured or put on the spot.

Learn more about how you can do this at www.SeriouslyCeliac.org.

  • Alicia Carango, NFCA Web & Social Media Manager

Do you have questions about celiac disease myths? Ask them on NFCA’s Facebook page at www.Facebook.com/nfceliacawareness.

Fact vs. Fiction: Gluten-Free Giveaway

Want to win free stuff from our friends at Mission? Just take the Fact vs. Fiction quiz and you’ll be automatically entered to win a gluten-free prize pack.

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NFCA thanks Mission for sponsoring this campaign!