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4 Myths You Might Believe About Celiac Disease

Updated on May 4, 2019
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The gluten-free trend may be scoffed at by some, but it has led to an increase in gluten-free foods being available for people with celiac disease, often just called "celiac" for short. That being said, a lot of people don't really understand what celiac is, conflating it with gluten allergy/intolerance or "being part of a fad diet."

Today I'm here to clear up 4 myths you might have heard about celiac disease.

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Myth 1 - If You Never Eat Gluten, You Won't Get Celiac Disease.

This sounds sort of logical, when you know that those with celiac can't eat gluten without causing pain and damage to their digestive systems. But celiac isn't caused by gluten consumption. Celiac disease is an autoimmune disorder, which means that a person's immune system attacks the body, usually in response to certain triggers or conditions. In the case of celiac disease, the trigger is ingesting gluten, which causes the immune system to attack the intestinal tract, which can cause a lot of problems. The easiest and most common way of treating this is to not eat foods that contain gluten, which would eliminate that trigger.

So it's easy to understand why people might think that eating gluten leads to celiac in the first place. But that's not true on the biological level. Genetic mutations and other environmental factors play a part. A person who doesn't eat gluten might still have celiac disease, but since they don't ingest the substance that triggers attacks, they would not show symptoms. That's the goal of a gluten-free diet for people with celiac. Not having symptoms doesn't make them free of the condition.

Now, if somebody never eats any gluten at all (which would be an impressive feat, since gluten is found in a lot of food products), they may still develop celiac but never show any symptoms because they avoid the trigger, and so in a sense they're functionally free of the disease. But this is in the same way that any person with controlled celiac is functionally free of the disease. A gluten-free diet is treatment for the condition, and having no symptoms is not the same as having no disease.

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Myth 2 - Celiac Disease is a Temporary Condition.

This relates back to what I said about being free of symptoms not being the same as being free of the disease. Celiac disease damages the intestines, making it difficult to absorb nutrients from food and causing other problems such as pain, diarrhea, fatigue, and more. A gluten-free diet gives the body a chance to rest without being attacked by itself, and that allows time for some healing to occur, but consuming gluten again will cause damage again and undo a lot of that healing.

So a person who sticks to a gluten-free diet won't have the same symptoms they did before going gluten-free, but that doesn't mean they no longer have celiac. It just means their condition is under control, and that they're not experiencing debilitating symptoms. This is likely where the myth comes from; from an outside perspective, the person with celiac is "all better," not having any more problems, so people think they must be cured.

Celiac disease has no cure, per se. It has treatment, and that treatment works very effectively to control the condition, but the underlying condition is still there even when the symptoms are not.

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Myth 3 - Celiac Disease is a Very Rare Condition.

It's almost funny to hear myth when combined with all the people who insist that gluten is the cause of so many health problems. But aside from my own personal thoughts on the irony, the fact of the matter is that actual celiac disease is more common that many think. It varies from region to region (genetic selection, dietary resources, etc), but the global average has been estimated at somewhere between 0.5% to 1% of the population. That may not sound like very much, but to put it in perspective, given the average number of high school students per school, the number of students with celiac could be grouped together to take up about 1/4 of an average class.

Statistically, only 1 of them would have known it, though. It's estimated that about 80% of celiac cases are undiagnosed, meaning a person has celiac disease but has received no official diagnosis from a doctor. They still experience symptoms, but can't claim, "My doctor told me I have celiac." That could be because their symptoms are relatively mild compared to others, or because they can't afford to go through the testing required to get a diagnosis and they just handle things on their own. Their are a number of reasons why someone may not be diagnosed.

This leads to the impression that celiac disease is more rare than it is. Out of a group of 1000 people, 10 of them may have celiac disease, but only 2 know it.

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Myth 4 - Celiac Sufferers are Making a Big Deal Out of Nothing.

Picture, if you will: you sit down to eat a meal of spaghetti and meatballs, and it is as delicious as it looks.

An hour later, your stomach starts to cramp, and also to distend because you're bloated. You make a mad dash for the bathroom because you suddenly feel a horrible attack of diarrhea coming on.

This echoes what you've been experiencing for months now. Eating has become a chore; even foods you used to love now cause you discomfort at best and agony at worst. You're losing weight, to the point that you're underweight now; your collarbone sticks out too much and people are starting to give you the expressions and commentary usually reserved for those with eating disorders. You can't convince them you're not anorexic or bulimic, you really enjoy food... when it doesn't hurt you. There are ulcers in your mouth, and they bleed. You're tired all the time now, and you hurt too, and you're not sure why. You know it's probably related to the other things happening, the reaction to food, but you don't know exactly how.

Welcome to celiac disease.

If this sounds like a lot of other gastrointestinal disorders, that's because it is. Celiac disease can present the same way many GI disorders can, which can make it hard to pin down and get a diagnosis for. And while these symptoms aren't the case for every celiac sufferer (some people have very mild symptoms that they overlook or can attribute to something else, and their lives aren't as interrupted those with more serious cases of celiac), they absolutely can happen to people with the condition.

Partly due to the gluten-free diet trend, there are many out there who don't take celiac disease seriously, and mentally lump those with celiac into a group of people who are just freaking out over nothing. "Gluten isn't that bad, people are just jumping on the fad diet bandwagon, stop complaining so much."

But when you know that something will cause you that much pain, you'd be adamant about avoiding it too. It's not just about avoiding pain, but also about avoiding damage to the small intestine; if the damage is severe enough, you can't absorb other nutrients, which leads to many other problems such an anemia, brittle bones, or easy bleeding. It is a serious condition that can cause life-altering and sometimes life-threatening problems, and it deserves to be taken more seriously than it often is.

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