This post features 10 Surprising Celiac Disease Myths Debunked and should not be used to diagnose or treat any condition. Please see my disclaimers.
Celiac disease is a rare but serious autoimmune disorder that affects one’s entire immune system.
When someone with celiac disease eats gluten, their immune system goes into attack mode, mistaking gluten as a foreign invader and attacking it at the sight of the small intestine.
Overtime, these attacks wear down and destroy the outer lining of the small intestine, known as the microvilli. The finger-like villi are responsible for properly absorbing and distributing nutrients from food; however, the villi are flattened in people with celiac disease and do not function properly.
10 Surprising Celiac Disease Myths
Because celiac disease is associated with the gluten-free diet, which some consider a “fad” diet, it is often misunderstood and even ridiculed.
The general public often brushes off celiac disease as a fad diet for high-maintenance people, and even people with celiac disease think their disorder will eventually go away or they do not think it’s worth the exhausting effort it takes to properly manage it.
Because these sentiments are commonplace, a ton of celiac disease myths have emerged, and the spread of misinformation has become commonplace.
In this article, I will attempt to set the record straight by debunking the following celiac disease myths.
Myth #1: Celiac is Curable
Celiac disease is a lifelong disease with no cure. Once you have celiac disease, you always have it (unless there is a cure down the road, and there are some promising treatment options on the horizon).
That said, while there is no cure for celiac disease, it is not to be confused with the fact that you can put your celiac disease symptoms into remission.
Many people with celiac disease live a full, symptom-free life. Learn how I healed my body after a devastating celiac diagnosis in an article titled, How I Put My Celiac Disease Symptoms into Remission.
Myth #2: A Little Gluten Won’t Hurt
A lot of people think that because they feel better, or because they are asymptomatic, they don’t have to worry about cross contamination or their food coming in contact with trace bits of gluten. They also may feel like they can eat a “cheat” meal from time to time.
The truth is that even a crumb of gluten can set off an autoimmune reaction in people with celiac disease, and even a crumb can affect one’s ability to properly absorb nutrients.
The Mayo Clinic says if untreated, “Celiac disease can result in serious complications.”
Read my article, Don’t Cheat on Your Gluten-Free Diet, for additional insights about how cheating can negatively impact you, and can lead to disorders such as cancer and early death.
Myth #3: You’ll Eventually Grow Out of Celiac Disease
Doctors once thought a diet comprised of bananas – along with meat, cheese and vegetables – “cured” celiac disease. The diet worked, and many children were “fixed” after following this diet for six months under the watch of Dr. Sidney Haas, the doctor who invented the banana diet in 1924.
What we know, now, is that the diet was unintentionally gluten free. It wasn’t bananas that “cured” the babies; rather it was the avoidance of gluten that improved their conditions.
A lot of these “banana babies” grew up never knowing they still had celiac disease. They’d been told that celiac disease is something they grew out of.
One banana 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 her a celiac disease test, which confirmed she still had celiac disease. Now she wonders about the possible connection between untreated celiac disease and her two miscarriages, frequent colds, and lifelong chronic constipation.
Myth #4: A Negative Celiac Tests Means Your Negative for Life
Researchers have learned that a negative celiac disease test only means you don’t have celiac at this moment in time, but it doesn’t say anything about your future chances of getting the autoimmune disorder.
In fact, in order for someone to have celiac disease, (1) they must carry one of the two genes (HLA DQ2 and DQ8), (2) they must be eating gluten, and (3) they must experience some sort of intestinal permeability (leaky gut) or change in their gut flora.
Related Reading: What Causes Celiac Disease?
If you have the gene and eat gluten, at some point the disease can “turn on.” It’s not a sure thing, but it’s certainly a possibility.
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.
That said, knowing you have one of the celiac genes can be helpful in diagnosing the disorder in some cases.
If you, for example, implemented a gluten-free diet without first ruling out celiac disease, instead of eating gluten again in order to get tested (because you must be eating gluten for a celiac disease test to be accurate), you can first see if you carry one of the genes.
If you don’t have the genes, it means you don’t have celiac, and if gluten makes you sick, you instead have non-celiac gluten sensitivity.
Related Article: Should You Take the Gluten Challenge?
Genetic testing is helpful if a first degree relative has celiac disease. A Mayo Clinic study found a high incidence of celiac disease in first-degree relatives.
Related Reading: Does Celiac Disease Run in Families?
In these cases, you may want to test your first degree relatives for celiac disease. If their test comes back negative, they can then do genetic testing to find out if they carry HLA DQ2 and DQ8.
If they do, those relatives will need to be tested annually for celiac or at least watch for potential symptoms. If they don’t have the genes, then they can rule out celiac and not worry about annually testing for it.
Myth #6: Celiac Disease Is a Digestive Disorder
While it’s true that a large number of celiac disease patients complain of digestive issues, such as interminable bloating, chronic gas, diarrhea, constipation and more, the truth is there are more than 200 signs and symptoms related to celiac disease, and most have nothing to do with tummy troubles.
In fact, a large number of celiac disease diagnoses come from the dermatologist. Ten percent of all people with celiac disease were diagnosed due to a painful skin rash known as Dermatitis Herpetiformis (DH) or celiac rash.
Nutritional deficiencies, joint pain, behavior disorders, dental disorders, and a slew of other conditions have been linked to undiagnosed (and therefore unmanaged) celiac disease.
Related Reading: 10 Signs and Symptoms of Celiac Disease
Myth #7: You Can’t Touch Gluten If You Have Celiac
Someone must be eating gluten in order for it to cause intestinal damage. Therefore, simply by touching gluten, someone with celiac disease cannot be affected by the protein.
However, if someone with celiac touches gluten, and then touches their mouth, they could ingest gluten and therefore be affected by it.
I personally avoid touching gluten. If I need to handle pizza or cupcakes at a birthday party, I wear gloves. If I touch gluten by accident, I wash my hands in warm soapy water for at least 20 seconds to get off all the contamination.
In theory, you could use lotion that contains gluten, but why take the risk? Lotion from your face or hand could easily be transmitted into your mouth.
Related Reading: Best Certified Gluten-Free Beauty Products
If you have a wheat allergy, however, you should avoid handling wheat as it may trigger an allergic reaction.
People with a wheat allergy, for example, should avoid touching gluten out of necessity, while those with celiac disease should avoid touching it out of choice.
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.
Celiac disease an autoimmune disease, whereas a gluten sensitivity is a food intolerance.
Again, both conditions should be taken seriously, and I encourage you to read more about the differences and similarities between the two disorders in this article, Gluten Sensitivity vs. Celiac Disease.
Please note that in the article, I discuss how people with gluten sensitivity are at higher risk for early death than someone with celiac disease, likely because people with gluten sensitivity don’t always take their disorder as serious as someone with celiac disease.
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. Once someone with celiac disease implements a gluten-free diet, however, they usually return to a normal weight for their body constitution.
However, some – if not more – people with celiac disease are at a normal weight or even overweight. This is because some people with undiagnosed celiac disease eat more than they should because they’re trying to fill a nutrition gap. They may always feel hungry and malnourished because their body isn’t properly absorbing nutrients, so they keep eating to fill that gap.
Related Reading: Why Do People with Celiac Gain Weight After Going Gluten Free?
On top of that, the words “gluten free” are often used interchangeable with the word “healthy.” A gluten-free donut is just as caloric and sugar-filled as a regular donut. May people on the gluten-free diet forget this and think just because it’s gluten free means it must be healthy.
Myth 10: Celiac Disease is a Food Allergy
Remember, celiac disease is an autoimmune disorder, not a food allergy. You cannot be allergic to gluten, or technically have a gluten allergy, but you can have a wheat allergy, celiac disease, or gluten sensitivity.
What Other Celiac Disease Myths Exist?
Let’s set the record straight and knock out other commonplace celiac disease myths.
Please leave a comment to share other myths and knock ’em out for good!