The web can be a great resource after diagnosis, but navigating misinformation is an essential skill.
On average, people with celiac disease wait up to 10 years to get an accurate diagnosis. When they do get one, they are often told to stop eating gluten and “Google it” for more information. For so many of us, the internet is our lifeline, giving us access to gluten-free recipes, and connecting us with others who share our experiences. Alongside this wealth of information, however, comes a wealth of misinformation.
It’s no surprise that myths about celiac disease circulate on the web. These myths, however, leave people to make their own best guesses at how this information applies to their lives. The Beyond Celiac team works with researchers from around the world and to keep on top of the latest celiac research to hit medical journals. Here, we identify four common research myths that are currently circulating.
1. Myth: Wheat breeding has increased the prevalence of celiac disease.
Researchers don’t know why celiac disease is on the rise. What they do know is that wheat breeding is most likely not responsible for it. In 2013, celiac disease expert Donald Kasarda, PhD, released study results that showed that wheat breeding does not result in additional gluten protein in the finished product.
To determine this, Kasarda studied data on wheat from the 20th and 21st centuries. He found that wheat breeding did not increase the content of gluten in wheat. What he did find, however, is that there has been an increased use of “vital gluten” in foods. This is a concentrated gluten protein that can be added to make products fluffier and give them more elasticity.
While this is not a result of wheat breeding, the rise in celiac disease coincided with the rise in the use of additional vital gluten. Kasarda emphasizes that more research is needed, and while vital gluten is found in more products, it still is not a major part of the average total gluten intake resulting from intake of wheat flour-based products. Ultimately, researchers are still looking for answers to the question of why celiac disease is more common today.
2. Myth: Delaying gluten introduction in a child’s diet can prevent celiac disease.
In 2015, a team of researchers examined 15 studies conducted on this topic. What they found was that children who were given gluten for the first time after six months of age had a 25 percent higher chance of developing celiac disease. Currently, pediatric recommendations say that gluten introduction should occur between four and six months of age, and in a Beyond Celiac interview with expert Dr. Stefano Guandalini, he suggested that the best window may be between five and six months of age, there’s no scientific evidence that early gluten introduction (adding gluten to the diet at or before three months of age) increases the chances of preventing celiac disease.
3. Myth: Breastfeeding can prevent celiac disease.
Breastfeeding is recommended by doctors over formula-feeding infants for a variety of health reasons. Preventing celiac disease, however, is not one of them. In that 2015 study review, researchers found that breastfeeding vs. not breastfeeding played no role in the development of celiac disease. While it may not prevent celiac disease, breastfeeding is still recommended by doctors for the host of benefits it provides to mothers and their babies.
4. Myth: Clinical trials to study new celiac disease treatments are unnecessary because the gluten-free diet is the cure.
The gluten-free diet is quite literally a life-saver for people with celiac disease, but it is by no means a cure. According to Dr. Joseph Murray of the Mayo Clinic, up to 70 percent of people with celiac disease continue to be exposed to gluten, despite their best attempts to remain strictly gluten-free. The evidence in the research is clear: the gluten-free diet alone is not enough.
There are several clinical trials in progress that are seeking to either supplement or replace the gluten-free diet. While these advances are extremely exciting, it’s important to know that other research is just as important. While the involvement of people with celiac disease is critical for drug trials, participation is still needed in other areas of research such as: developing new blood tests or other diagnostic tools, or learning more about symptoms and associated conditions.
Opportunities to participate may include surveys, focus groups and other information-sharing to help researchers better understand a variety of areas associated with living with celiac disease.
Sorting through the myths and facts can feel daunting, especially when you are newly diagnosed with celiac disease. Beyond Celiac shares credible, evidence-based information regularly. Don’t miss any of the research news by signing up for the Beyond Celiac Research Opt-In.
Alice Bast is the CEO of Beyond Celiac (formerly National Foundation for Celiac Awareness). Visit BeyondCeliac.org to learn more.