Celiac Myths That Need To Be Retired For Good!
There are so many misconceptions about celiac disease and so much we’re still learning. It’s critical that people know the basics to get an accurate diagnosis, stay safe, and live well. So let’s debunk a few common myths when it comes to celiac disease and separate fact from fiction.
1. You’re overweight, so you can’t have celiac disease.
I learned that in school, too, but that doesn’t make it correct. On average, people with celiac weigh less than the general population, but the overwhelming majority are normal weight, overweight, or obese at diagnosis (1).
2. Your mom/brother/cousin/etc. has celiac, but you don’t need to worry. You don’t have tummy troubles.
Ah, if only it were that simple. Even though some people experience classic symptoms like diarrhea and weight loss, the majority of celiacs do not have symptoms, or instead experience “atypical” symptoms such as iron deficiency anemia, headaches, infertility, and many others. If you’ve got a first degree relative with celiac disease, you’ve got a 1 in 22 chance. Get tested ASAP (2).
3. You’re too old to have celiac disease.
Celiac disease doesn’t discriminate by age. Almost a third of newly diagnosed patients are over the age of 60. I’ve seen newly diagnosed 80 year old patients(3).
4. Ethnic people (African American, Hispanic, etc.) don’t get celiac.
Celiac disease is more common among caucasians and is rare in other groups, but Africa is a large continent and a huge group of people identify themselves as Hispanic. Most of us also carry genes from a variety of places, so this logic is inaccurate. Five percent of people in the Sahara region of Africa have celiac disease compared to less than one percent in the United States, so clearly it’s not as simple as diagnosis by racial group (4).
5. “Listen up, celiacs! Grains are all the same. All of them have gluten and they’re all poison.”
We know that when people with celiac stop eating gluten (i.e. wheat, barley, rye) their autoimmune antibody levels almost always return to a normal level, even if they keep eating
gluten-free grains such as corn, rice, and quinoa. Often, many or all symptoms go away. All grains definitely do not have the same impact on the body.
Studies have often shown that despite reporting a glutenfree diet, many people do still have intestinal damage when they are re-biopsied. Mainstream doctors believe this is because of accidental gluten ingestion likely due to cross-contamination, but some feel this is a result of inflammation from other grains.
Some people, including myself, feel poorly when eating grains. Other people have issues with dairy, soy, beans, FODMAPs, fats, and more. If you feel badly when you eat grains, please don’t.
There are many other good sources of nutrients. But saying that all grains are the same encourages the slippery slope of excuses where eating rice is equivalent to eating wheat, and we know that’s not true. Avoiding gluten is non-negotiable. The rest is quite individual.
6. Just go gluten-free. If you feel better, we’ll run the celiac tests.The most amazing part of celiac disease is that once you stop eating gluten, your intestines start to heal. No gluten means no further damage. The healing process can take anywhere from a few months to more than a year. But the longer you wait, the less accurate tests will be. Get tested before going gluten-free.
7. “Your intestines looked fine so you didn’t need a biopsy,” or, “We’ll take one (or two) biopsies to diagnose.”
It’s easy to understand where this one goes wrong. First, it’s very easy for a physician to miss damage without looking under a microscope. The surface area of our intestines is about the size of a tennis court. Damage related to celiac disease is patchy. If they only look at one or two spots, they can miss the damage by chance.
While celiac disease can be diagnosed with just one biopsy, recommendations are to take four to six biopsies. Only 35% of doctors are following these recommendations. The more biopsies taken, the higher chance of a celiac diagnosis. So, if you or someone you love is going in for a biopsy, maximize the odds of an accurate diagnosis and choose a doctor who has experience and follows the current guidelines( 5).
8. I went on a special diet/took special supplements/had a special treatment and my gut is now healed, so I can safely eat gluten now.
Everything we know says celiac disease is a lifelong condition. No matter how many magic wands you wave or special supplements you take, you must remain gluten-free for life. If you are gluten sensitive but do not have celiac disease, we honestly don’t know yet about the long-term effects of reintroducing gluten after following a gluten-free diet.
9. You need to go gluten-free, but it’s okay to have a cheat day every now and then.
I bet you know this isn’t true, but there are some doctors still saying this! A crumb is all it takes to have continued damage. Even a milligram a day is enough to make someone sick. A cheat day is definitely not a safe option (6).
1. Kabbani TA, Goldberg A, Kelly CP. Body mass index and the risk of obesity in coeliac disease treated with the gluten-free diet. Aliment Pharmacol Ther 2012; 35: 723–729.
3. Rashtak S, Murray JA. Celiac disease in the elderly. Gastroenterol Clin North Am. Sep 2009;38(3):433-46.
4. Rubio-Tapia A, Ludvigsson JF, Brantner TL. The prevalence of celiac disease in the United States. Am J Gastroenterol. 2012 Oct;107(10):1538-44.
5. Lebwohl B, Kapel RC, Neugut AI, et al. Adherence to biopsy guidelines increases celiac disease diagnosis. Gastrointest Endosc. 2011 Jul;74(1):103-9.
6. Biagi F, Campanella J, Martucci S. A milligram of gluten a day keeps the mucosal recovery away: a case report. Nutr Rev. 2004 Sep;62(9):360-3.