If you’ve heard that celiacs can’t touch gluten, or that celiac disease is solely a digestive disorder, you’ve heard some of the surprising celiac disease myths floating around the Internet today. In this post, I’ll debunk these myths and help you sort fact from fiction. Please see my disclaimers.
You’ve probably heard plenty of myths about celiac disease and the gluten-free diet, and you might be wondering what is fact and what is fiction. Millions of people suffer from celiac disease and non-celiac gluten sensitivity today, and unfortunately everyone thinks they’re an expert.
I have studied gluten disorders in earnest as a Certified Gluten-Free Practitioner and after living with celiac disease myself for more than 10 years.
Before I debunk the crazy celiac disease myths abound today, I want to first explain a bit more about gluten and celiac disease.
Gluten is a protein found in wheat, rye, barley and sometimes oats. When a person with celiac disease eats gluten, their immune system becomes confused and mistakenly sees gluten as a foreign invader. It then goes into attack mode, destroying the healthy tissue surrounding the small intestine. The small intestine is responsible for absorbing and distributing nutrients from the food you eat to every organ, tissue and cell in your body.
Celiac disease is a genetic autoimmune disease that is triggered by the consumption of gluten. Celiac is the only autoimmune disease in the world in which the trigger, gluten, is known. The only treatment for celiac disease is a strict, life-long gluten-free diet as there is no cure for celiac disease.
A lot has been said about celiac disease, especially today as more people turn to the gluten-free diet as a cure-all meant to improve their autoimmune conditions (which it does!).
Unfortunately, however, celiac disease remains widely undiagnosed. According to Beyond Celiac, 83 percent of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions. On top of that, a lot of people with the actual disorder are often dismissed as simply having a fad diet.
Myth #1: Celiac is Curable
As mentioned, celiac disease is a lifelong disease with no cure. Once you have celiac disease, you always have it. And while there are some promising treatment options on the horizon, for now, a strict gluten-free diet is the only way to manage the disorder.
Many people, including myself, have put their celiac disease symptoms into remission and are able to live full, symptom-free lives. However, remission only lasts as long as someone stays gluten free. Once gluten is reintroduced, symptoms reemerge, sometimes with a vengeance.
Myth #2: A Little Gluten Won’t Hurt
This means people with celiac disease should not only avoid foods that contain gluten, but also they should be careful to avoid foods that may have come in contact with gluten, known as gluten cross contamination.
They should also avoid cheat-days because even one slice of pizza every so often can cause harm and reset the clock on the healing process. I wrote, in detail, about what happens if you eat gluten with celiac disease.
Myth #3: You Can Outgrow Celiac Disease or Gluten Sensitivity
Dr. Sidney Haas once thought a six-month-long diet comprised of bananas could cure celiac disease. As it turns out, it work, and dozens of babies were “cured” from celiac disease in 1924.
However, today researchers know that it wasn’t the bananas that cured the babies, it was the removal of gluten from their diets that ultimately improved each baby’s condition.
Unfortunately, a lot of these “banana babies” grew up never knowing they still had celiac disease or thinking they were cured or would grow out of celiac disease. One such baby, Lindy Redmond, told NPR, “All my life I have told doctors I had celiac as a child, and that I grew out of it. And all my life I have eaten wheat.”
At age 66, a doctor finally gave Redmond a celiac disease test, which confirmed she still had celiac disease. Today, Redmond says she wonders about the connection between her untreated celiac disease and her two miscarriages, frequent colds, and lifelong chronic constipation.
For those with gluten sensitivity, Dr. Tom O’Bryan says that the immune system makes memory b cells to gluten. That means your immune system remembers gluten and will make antibodies to gluten every time you eat it, leading to inflammation and disease. This is why you can’t eat “just a little” gluten. Your body remembers and reacts to gluten accordingly.
Myth #4: A Negative Celiac Tests Means You’ll Never Have Celiac
A negative celiac disease test only means someone doesn’t have celiac at a single moment in time; however, it doesn’t say anything about someone’s future chances of getting the disease. In fact, the genes (HLA DQ2 and DQ8) for celiac disease can turn on at any time, triggered by gluten and intestinal permeability.
This means if someone tests negative for celiac disease today, a test six months later might reveal the presence of celiac disease. There is a genetic test that will tell you if you carry one of the two genes for celiac disease. If you do, it’s recommended that you test yourself for celiac disease annually (this at-home celiac test from imaware can help) or with the onset of symptoms.
Myth #5: If You Have the Celiac Gene, You Have Celiac Disease
About 25-30 percent of the population carries one of the genes, HLA DQ2 and DQ8, associated with celiac disease, however, only 1-3 percent of the population has celiac. This means only a small percentage of the people with the gene go on to develop celiac disease. In other words, while your genes do not dictate whether or not you will have celiac, they can tell you if you’re genetically predispositioned to celiac disease.
I believe there are two cases where genetic testing for celiac disease is helpful.
First, if you have a first-degree relative with celiac disease, you have a higher chance of getting the disorder. In such cases, genetic testing might be helpful. I found out my son doesn’t carry one of the celiac genes, but my daughter does. This means I need to monitor my daughter for symptoms of celiac disease and test her periodically whereas my son does not need to be tested for celiac disease any further.
Second, genetic testing can be useful to someone who may have gone gluten free, but didn’t first rule out celiac disease. In order for a celiac disease test to be accurate, you must be eating gluten. Reintroducing gluten to the diet, which is known as the Gluten Challenge, can be a painful task for someone who reacts to gluten. Instead of putting someone back on gluten, a doctor may first test to see if the patient carries one of the celiac genes. Such a test can be used by a doctor, along with the patient’s health history, to diagnosed celiac disease.
Myth #6: Celiac Disease is a Digestive Disorder
While it’s true that a large number of celiac disease patients complain of classic digestive issues, such as chronic and painful bloating, gas, diarrhea, acid reflux, constipation, leaky gut, and more, the truth is that there are hundreds of symptoms of celiac disease, and many have nothing to do with tummy woes.
For example, 10 percent of celiac disease patients were diagnosed due to a painful skin rash known as Dermatitis Herpetiformis (DH) or celiac rash. Plus, nutritional deficiencies, joint pain, behavior disorders, dental disorders, leaky gut, hair loss, and a slew of other conditions have been linked to undiagnosed (and therefore unmanaged) celiac disease.
Myth #7: You Can’t Touch Gluten If You Have Celiac
Are you curious if someone with celiac disease can touch gluten? The truth is, a person with celiac disease must be eating gluten in order for it to cause intestinal damage. Touching gluten does not cause intestinal damage.
The only caveat is that touching wheat can trigger an allergic reaction in people with wheat allergy. Celiac disease is not a “gluten allergy“, it’s an autoimmune disease.
Additionally, if someone with celiac touches gluten, and then touches his mouth, he could inadvertently ingest gluten and therefore become affected by it. This is why I avoid touching gluten altogether, whenever possible, and wash my hands thoroughly in warm soapy water for at least 30 seconds to get off any gluten contamination. I also always wash my hands well before handling food.
Further, you cannot get glutened by using a lotion that contains gluten, however, if that lotion or other beauty products contain gluten, the gluten could accidently make its way into your mouth. This is why many expert recommend using gluten-free makeup and gluten-free sunscreen.
Myth #8: Celiac Disease and Gluten Sensitivity are Interchangeable Disorders
While both people with celiac disease and non-celiac gluten sensitivity must avoid gluten, the way gluten reacts in their bodies is very different as celiac disease is an autoimmune disease, whereas gluten sensitivity is a food intolerance. You can learn more about the similarities and differences in the two disorders in this article, Gluten Sensitivity vs. Celiac Disease.
One interesting note is that most people with celiac disease won’t react when they eat gluten-free wheat starch; however, people with non-celiac gluten sensitivity will react to any product with wheat in it, even gluten-free wheat products (yes, they do exist!).
The truth is, non-celiac gluten sensitivity is more of a sensitivity to wheat vs. gluten and people with non-celiac disorders may be reacting to other components of wheat, not just the gluten. Read Wheat Free vs. Gluten Free – What’s the Difference? for more information on this topic.
Myth #9: People With Celiac Disease are Skinny
Because celiac disease is a nutritional disorder, many people with celiac disease are underweight due to malnourishment and chronic diarrhea. However, once someone with celiac disease implements a gluten-free diet, they usually return to a normal weight for their body constitution.
However, some people with celiac disease are at a normal weight or even overweight, which is possible for several reasons.
First, people with undiagnosed celiac disease often eat more than they should because they’re trying to fill a nutrition gap. They may often feel hungry because they’re eating, but they’re malnourished because their bodies aren’t properly absorbing nutrients. They keep eating to fill the gap.
Oftentimes, once someone goes gluten free, they don’t adjust how much they eat, so they naturally gain weight on the gluten-free diet. Plus, a lot of gluten-free food is marketed as “healthy” despite being loaded with fat and sugar; there is plenty of gluten-free junk food around. Read the 5 Dangers Associated with the Gluten-Free Diet to avoid many of the pitfalls that come when switching to the gluten-free diet.
Myth 10: Celiac Disease is a Food Allergy
Celiac disease is an autoimmune disorder, not a food allergy. This means a person cannot be allergic to gluten or have a gluten allergy. Instead, someone could have a wheat allergy or non-celiac wheat sensitivity. These are real disorders.
A lot of people say they have a “gluten allergy” simply to get the point across that they cannot eat gluten. Waiters understand the word “allergy” much more clearly than they understand “autoimmune disease,” so using the term “gluten allergy” is a way to speak the restaurant staff’s language and to ensure a safe meal when eating out gluten free.
Myth 11: Heat Can Kill Gluten
Gluten is a protein, not a bacteria. This means that while heat can kill bacteria, it cannot kill food particles or proteins present in food. Therefore, heat cannot kill gluten, only soap and water can. If this myth were true, it would mean someone with celiac disease could eat anything that’s cooked, and that’s just not true. Read more about this myth in this article, Does Heat Kill Gluten?
Myth #12: You’ll Automatically Feel Better If You Eat Gluten Free
The gluten-free diet is far from a “healthy” diet. Sugar is gluten free, and there is plenty of gluten-free junk food to be found in today’s grocery stores. Many gluten-free foods also contain more sugar and fat and less nutrition than their non-gluten-free counterparts.
I believe eating gluten free isn’t enough to ensure you’re feel better. It took me years to fully heal my body after having eaten gluten for 30+ years. In order to heal from celiac disease, I had to take a hard look at my diet to understand that, while I removed the offending food, I still hadn’t changed my eating habits for the better. I discuss my journey to heal, in detail, in my book, Dear Gluten, It’s Not Me, It’s You.
Myth #13: It’s Gluten Free, So It Must be Good For You
Remember, just because a product is labeled “gluten free” doesn’t mean it’s “good for you.” Sugar is gluten free, but everyone knows that eating excess sugar will make you sick and fat.
Myth #14: Something Labeled “Gluten Free” is 100% Gluten Free
Did you know that many products can be labeled “gluten free” but may still contain gluten? This is possible because the FDA says that people with celiac disease can safely consume up to 20 parts per million (ppm) of gluten without causing an autoimmune reaction. In order for a product to be labeled “gluten free”, it must contain less than 20 ppm of gluten.
In other words, a product can contain 1-19 ppm of gluten and still be labeled gluten free. However, let’s say someone eats several products that contain 19 ppm throughout the day; is this safe? The FDA doesn’t say, and most people with celiac disease wouldn’t want to take the risk.
People with celiac disease are wise to eat as many naturally gluten-free, unprocessed foods as possible, including lean meats, fruits, vegetables, eggs, and cheeses, to avoid eating traces of gluten throughout the day.
Myth #15: Eating Gluten Free Causes Heart Disease
A few years ago, researchers published a study with a headline that read long-term gluten consumption in adults without celiac disease could lead to an increased risk in coronary heart disease. However, if you actually read the study, you’ll see that the researchers found no such thing.
Instead, they concluded that long-term consumption of gluten was not associated with a risk in heart disease, but that avoiding gluten may result in reduced consumption of “beneficial whole grains, which may affect cardiovascular risk.” Of course, media outlets and bloggers couldn’t wait to get their hands on such a sensational headline, which made people look stupid for following a gluten-free diet.
The truth is that it’s important that people with celiac disease eat a well-balanced, fiber-rich diet with plenty of fruits, vegetables, gluten-free whole grains (oats, buckwheat, quinoa, etc.), and lean proteins just as anyone should consume in order to stave off heart disease.
Myth #16: “Gluten Free” Doesn’t Mean “Wheat Free”
It’s important to note that just because something is gluten free, it doesn’t mean it’s wheat free. In fact, Digiorno gluten-free pizza is labeled “gluten free” yet it contains gluten-free wheat starch, as does Caputo gluten-free flour. Wheat starch can be gluten free in some cases.
Conversely, just because something is wheat free, doesn’t mean it’s gluten free. For example, something can be labeled “wheat free” but still contain barley and rye. Barley and rye both contain the gluten protein but are technically “wheat free.” Read those labels carefully!
What Other Celiac Disease Myths Exist?
Please leave a comment to share other celiac disease myths you’ve heard or any questions you have.