Shining Light on the Misconceptions About Celiac Disease

In early 2020, COVID-19 became the world’s enemy. In September 2020, gluten became mine.

The morning that many Californians woke up to the surprise of an orange-tinted sky on Sept. 9, 2020, I awoke with a ringing in my ears as usual, and a fogginess in my head. Pins and needles shot up and down my leg. That day, the dimming down of the world’s noise really allowed me to key in to the sensations of my body. I decided I was done talking them away and attributing them to stress or anxiety; something was wrong and I needed to figure out what.

I reached out to my doctor asking to be tested for various autoimmune disorders. A few days after going in to the lab, all the tests came back normal — except for the one for celiac disease. Finally, a verifiable cause for the constellation of symptoms I’d experienced on and off since 2015, that I’d gone to doctors for only for standard blood tests to come back normal every time.

Prior to my diagnosis I didn’t know much about celiac, an autoimmune disease wherein the ingestion of gluten damages the villi of the small intestine, making it difficult to absorb nutrients (the only cure for which is to adhere to a strict lifelong gluten-free diet).

As I became more involved with the community and expanded my knowledge of the condition though, I began to see how little awareness there is of it, as well as how much misinformation about it is currently circulating the general public.

A pharmacist for example, after I asked her whether my medication contained any gluten, asked me what the difference was between gluten and gelatin. Another friend told me “I’m sure a small crumb wouldn’t hurt you.” The lack of awareness even extends to the medical community. One doctor said that in his 3,000 page book he read for medical school, only one paragraph was dedicated to celiac. Awareness is important when you consider that 80 percent of the 1 in 100 people currently living with celiac disease do not know they have it (this statistic is backed up by countless reputable sources across the internet, not just one fringe study).

Undiagnosed celiac wreaks havoc on the body, ups your risk of cancer and developing other autoimmune diseases, and increases infertility. Eight of 10 women who frequently miscarry are unaware that celiac is the reason for their infertility.

Studies have also shown that rates of celiac disease are steadily increasing as time goes on.

This entry seeks to clear up some of the misconceptions. Most of this information comes from BeyondCeliac.org.

Celiac isn’t a “real” illness.

Frequently misunderstood and downplayed, celiac is often believed to be just a food allergy, a diet, or a lifestyle choice taken on to be trendy, rather than the serious autoimmune disease that it actually is.

If not treated early enough, celiac disease continues to inflame your body and can gradually demolish your digestive system. Undiagnosed patients are also at greater risk for health complications from miscarriage and infertility to several cancers to the development of other autoimmune disorders like Type I diabetes and multiple sclerosis.

I’d also previously assumed that if you were celiac, all one had to do was remove gluten from their diet and they’d be magically healed thereafter. I’d never considered the harm that years of undiagnosed celiac could have on the body, nor the time and care it might take to heal that.

Healing from celiac requires more than simply eating a gluten-free diet. The small intestines, especially in people whose celiac went undetected for years, have suffered an intense pummeling. Think of the body as a village, and gluten as an attacking invader. Even though gluten may be barred entrance now, he still left behind a colossal mess of damage. Beyond simply cutting out gluten, time, care, a whole foods diet, probiotics, and careful attention to what we eat are necessary for healing.

A small crumb can’t hurt you.

For many Celiacs, ingesting even as little as 1/64 of a teaspoon causes intestinal damage that can take weeks or months to repair. Even a tiny trace amount of gluten is poison to our bodies.

Any food that doesn’t contain gluten is safe for a Celiac to eat.

It’s possible for a food, even if its recipe doesn’t have any gluten in it, to become cross-contaminated by nearby gluten-containing foods that share the same kitchen. This makes many restaurants unsafe for Celiacs to eat at, despite their offering gluten-free options — given that they use the same ovens, dryers, and pans to cook their gluten food in.

“All” you have to do is cut out gluten from your diet.

Many people underestimate just how many foods (especially in the U.S. food industry) contain gluten. Traces of it can be found in items you never would have imagined, and as mentioned before, even these tiny amounts are enough to cause intestinal damage.

Furthermore, products from shampoo, sunscreen, lotion, even soap can contain gluten int hem. When I was first diagnosed, I performed an almost complete overhaul of my personal belongings, replacing many of these sundries with gluten-free versions. Gluten can’t be absorbed topically, but there is always the chance you could accidentally swallow some of these products — you open your mouth while showering, for instance, or eat some food after applying lotion.

Even some medications have traces of gluten in them: “Researchers referenced a study where 18 percent of drug manufacturers admit that their medications contained gluten as an inactive ingredient,” according to Lauran Neergaard, in an article for AP News.

If you don’t experience any GI symptoms, you probably don’t have it.

When my endoscopy confirmed that I not only had celiac, but have likely had it “for considerable time,” it came as a shock to me. How could I have gone undiagnosed for years?

I’d been eating large amounts of gluten my entire life without getting sick. That’s not to say I didn’t experience vague symptoms, but gluten never seemed to directly precede any of them.Though I did start experiencing GI symptoms in the week or two leading up to my diagnosis, for much of my life the only symptoms were fatigue, rashes, brain fog, and depression.

As I’d learn, 33% of people with Celiac are asymptomatic, and another 33% present with “atypical or non-classic symptoms” like these.

Celiac affects only the intestine.

An impaired gut can negatively affect all systems in the body by preventing nutrient absorption, hormone synthesis, and myelantion of neurons. Given that 80 percent of the feel-good neurotransmitter serotonin is produced in the gut, small intestinal injury can lead to mental health problems. According to BeyondCeliac.org, “Side effects of celiac disease can affect the brain in various ways, lowering quality of life for those suffering from untreated celiac disease or even after diagnosis.”

Studies have also linked celiac and poor gut health in general to behavioral issues in kids. A parent in a Celiac Facebook support group, who had a child with behavioral issues, said that after taking him off gluten the behavioral issues stopped right away.

Celiac can even affect the teeth. Dentists are being called on in fact to consider it as a possible underlying cause when they notice enamel defects or mouth ulcers in their patients.

“Dental enamel defects and recurrent aphthous ulcers, which may occur in patients with celiac disease, may be the only manifestation of this disorder,” said Moshin Rashid, a member of the professional advisory board of the Canadian Celiac Association.

Celiacs are high maintenance and nit-picky.

The derision and lack of understanding are evident in the many jokes flippantly tossed around about Celiacs.

One author wrote the following joke in her book: “For example, say you have a child whose peers’ parents routinely bake homemade cookies for class fund-raisers. Cookies with little icing smiley faces and a separate batch of gluten-free ones for the pussies.”

A specific worry I had after first getting my diagnosis was that people would judge me for my needs.

Author Jenny Levine Finke expressed similar qualms in her book Dear Gluten: It’s Not Me, It’s You:

“What will my friends think of me after they see how I interrogate the waiter and sound like such a diva when I place my order? This fear of confrontation and having to look ‘different’ from everyone else is sometimes more paralyzing to me than the fear of getting glutened.”

Actress Jennifer Esposito, who was diagnosed with celiac disease at the age of 36 after a lifelong battle with debilitating symptoms, writes:

“Celiacs are always apologizing. They are sorry for being an inconvenience, sorry for being annoying, sorry for not being any fun, sorry for being so much of a ‘problem.’”

We’re not being nit-picky or needlessly obsessive when we assert our needs—we’re protecting ourselves against sickness and internal damage. Consider the ability to eat whatever you want a privilege.

You can’t have a “mild” form of it. You either have it or you don’t.

It’s not like COVID. It’s more like being pregnant.

Symptom severity doesn’t correlate with the level of internal damage. You could have no symptoms at all, yet your intestines might still be suffering.

Still, people within the community do differ in the level of precautions they take. Some are more vigilant than others. One Celiac friend of mine avoids any restaurant that’s not certified gluten-free. She hardly goes out to eat but when she does, she brings her own food or just orders a drink. Another friend will eat at most places and says she’s usually able to find something on the menu that suits her.

If you test negative for celiac once, you’ll never get it.

Celiac can develop at any point in a person’s life. 25% of those diagnosed are actually senior citizens. If you have the gene for it (which 40% of the population does), environmental triggers at any point in your life can turn that gene on.

Celiac can go away.

Some food allergies and intolerances can be outgrown. Even people who are gluten sensitive at one point may one day regain the ability to eat gluten later on in life. Celiac doesn’t work that way though; it’s a lifelong condition.

I’ve heard talk that in 10 years there might be some kind of pill that Celiacs would be able to take in order to keep eating gluten — but that’s a long ways ahead.

These misconceptions hold serious repercussions for our community and the people currently living undiagnosed.

Chefs and restaurant staff may be less likely to take precautions against cross-contamination in the kitchen if they don’t understand the seriousness of our condition, for one.

For two, if parents and pediatricians aren’t aware of all the different ways Celiac presents itself, then their kids could make it all the way to adulthood with undiagnosed Celiac.

This may have happened with me, although I’ll never know if I was born with the illness or developed it at some point during my adult life. What I do know is that awareness of atypical presentations (which account for more than half of all Celiac cases) and increased testing are key.

Lack of awareness led one woman on the Celiac Facebook group to live undiagnosed until she was 48, even though she’d had symptoms since childhood (that doctors refused to give serious consideration). Her little sister was one of the people who had been diagnosed with Celiac early in and then told she had “outgrown” it (an example of how dangerous and life-threatening misinformation can be).

It’s my hope that an expansion in people’s knowledge of celiac disease can reduce the prevalence of situations like these. It’s my hope that it can help bring the 80% statistic down closer to zero.