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  • Writer's pictureMarne Platt

Five Dangerous Myths About Celiac Disease

Updated: Apr 26, 2021

And the Five Truths You Should Know Instead

Gluten Free Myth 1: Celiac disease is an allergy

No, it’s an autoimmune disease. While I will sometimes say that I am allergic to gluten in a restaurant, for shorthand, that’s not accurate, though it does help the restaurant understand that it's not a lifestyle choice.

There's a downside to this approach. People hear allergy and they think hives or an Epi-pen®. If I don’t blow up like a balloon or break out in hives in front of them, they think I’m faking. They don't take my request seriously the next time.

Celiac disease is an autoimmune condition. In very simple terms, when I eat gluten, my immune system gets ‘confused’ and attacks the lining of my intestine as if it was an invader. That’s not 100% accurate, but it does get the point across that eating gluten sets my immune system off. The results? Violent gastrointestinal upset, lasting for days.

‘Nuff said.

Gluten Free Myth 2: Gluten free is a fad diet

Why would anyone put themselves through the hoops required to give up gluten if they didn’t have to?

And yet, a surprising number of people do it. According to Forbes, in 2017 more than 3 million Americans were living gluten free, but only 28% of those actually had actually been diagnosed with celiac disease. The other 72%, or more than 2.2 million of them, chose to avoid gluten.

Yes, some of them may be undiagnosed celiacs, or suffering from non-celiac gluten intolerance. Getting to a diagnosis is not easy; too many physicians are unaware of our disease, or of the enormous range of signs and symptoms that we deal with, many of which mimic of host of other diseases.

But many of these 2 million people choose a gluten free diet because they are following a celebrity fad, or they have read on some quack’s website that gluten is ‘poison.’ It’s not poison, unless you happen to be celiac or have non-gluten celiac sensitivity or gluten intolerance.

Gluten Free Myth 3: The gluten free diet is healthier for everyone

If the gluten free diet stops you from eating processed food and going to McDonalds every week, then yes, it’s healthier. But that’s just because you’re cutting out fat, salt, and chemicals. If you replace gluten with ice cream, chocolate bars and processed gluten free foods, you aren’t doing your body any favors.

Just look at the major ingredient in gluten-containing vs. gluten-free baked goods: wheat flour vs. white rice flour (most gluten free products include rice flour as a major part of the replacement for wheat). Rice flour has much less fiber and protein than wheat flour, and that affects the final product, too.

Going gluten free by replacing bread with lettuce wraps, or fried foods with baked, is good for your health. The secret is in what you choose for replacing your old favorites.

If you choose to give up gluten, you take on other health risks. Much of the wheat flour on sale these days is enriched with B vitamins and iron. Cut out the wheat flour and it’s easy to be short on these nutrients too. A 2018 study listed micronutrient and fiber deficiencies, increased fat content of foods and coronary artery disease as just some of the risks from a gluten free diet.

Gluten Free Myth 4: A little bit won’t hurt you

I can’t count the number of times some well-meaning (or not so well-meaning) friend, relative or colleague has said, ‘oh come on, just a little won’t hurt you.’

Actually, it will.

Even a little bit will set off my immune system. And thanks to the quirks of this condition, I will get just as sick from one little bite, or even one little crumb, as I do from an entire pizza. It’s not fair.

This myth is particularly dangerous for children and teens, or for the newly diagnosed. Making the change is difficult enough already; add pressure from people who don’t support your efforts and it’s so easy to backslide. Yet those other people don’t suffer for it, we do.

It took me years to stop trying to excuse or justify myself. Now I just say ‘unfortunately, one bite will make me just as sick as the whole cake/bread/pizza/whatever.’ If they push I say, ‘I’m sure it’s delicious, but it’s not worth up to a week of vomiting and bloody diarrhea.’

No one has EVER pushed me to eat something after I shared that little detail.

Gluten Free Myth 5: There’s a pill for that

This myth makes me furious. It peddles false hope. Self-proclaimed experts tout their enzymes, homeopathy, supplements…none with a speck of data, most harmless but of no benefit, a few of them harmful, all of them expensive.

I cringe when I think of the desperate people who spend money they don’t have on a quack cure that won’t help them. Yes, pharma companies are working on some possible drugs for celiac disease. Some are even working with world-class celiac disease specialty centers, like the one at Columbia University in NY. But we don’t really know what they will be able to do, and won’t for a long time.

“ The specific place these therapies will fit into the day-to-day management of celiac disease have not been fully defined.” Celiac Disease Center at Columbia University

Get the facts

You owe it to yourself and the celiacs you love to bust the myths and learn the truth. Before you listen to Aunt Petunia’s neighbor or the folks at some random site called, get the facts about celiac disease and living gluten free.

If you’re new to celiac disease, or close to someone who is, get your information from the real experts. Columbia University, Massachusetts General Hospital, The University of Pennsylvania and other major medical centers have entire clinics dedicated to understanding and treating celiac disease. National patient organizations like The Celiac Disease Foundation, The Gluten Intolerance Group and the National Celiac Association advocate for celiac patients and help them adjust to their new life requirements.

Celiac disease is not curable, but it is manageable. Thousands of us live long, healthy lives by adhering to the gluten free diet. Let real knowledge make you powerful, and you can too.

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