Understanding Celiac Disease: Facts vs. Fiction

Many of us are familiar with the phrase “gluten-free” and choose to follow a gluten-free diet for health reasons or based on what we see on social media. But did you know that not everyone who chooses to go gluten-free has celiac disease?

At Connecticut Children’s, our pediatric gastroenterologists, who treat a good number of children with celiac disease, shed light on fact versus fiction when it comes to common misconceptions.

Here are five facts about celiac disease that may surprise you.

1. Fact: Celiac disease is not “just” a food allergy.

Celiac disease is a serious autoimmune condition that causes the immune system to attack the small intestine when gluten, a protein found in wheat, barley, and rye, is consumed. This results in damage to the intestinal lining and can lead to various gastrointestinal symptoms and poor absorption of nutrients.

This is not the same as a food allergy, when the immune system overreacts to a certain food. So, celiac is much more serious than a typical food allergy.

2. Fact: It’s not ok for people with celiac to “cheat” and eat gluten.

When people with celiac disease consume gluten—whether knowingly or unintentionally—it triggers an autoimmune response that damages the lining of the small intestine. This damage:

Affects the absorption of certain nutrients, which can lead to a range of digestive issues.
Ultimately leads to malnutrition, vitamin deficiencies, and a range of other health issues like fatigue, bone loss, and digestive problems.

Furthermore, the effects of eating gluten are not always immediately visible. Even if a person doesn’t experience noticeable symptoms, the immune response is still happening beneath the surface, potentially causing harm.

It’s important to understand that the damage caused by gluten consumption is cumulative. Over time, repeated exposure to gluten can lead to more severe and permanent damage. Therefore, people with celiac disease need to avoid gluten for life.

3. Fact: Celiac disease isn’t as rare as people think.

Many people believe that celiac disease is a rare condition, but it is more common than most people realize.

About 1 in every 100 people around the world are diagnosed with celiac, which makes it common.
Here’s the catch: many with celiac don’t even know they have it because they may not have any symptoms or assume their symptoms are related to another condition. Given that celiac disease can show up in a variety of ways, many people may have it without even knowing, and it is likely that many more people have the disease than we realize.

As awareness of celiac disease continues to grow, it’s important to understand that the disease is not rare and that its impact can be significant.

If you suspect you or a family member may have celiac disease—especially if it runs in your family—it’s important to consider seeing a specialist.

4. Fact: Celiac disease does not affect only the digestive system

While celiac disease is often thought of as a condition that solely affects the intestines, the symptoms are not limited to the digestive tract.

For example, it can lead to symptoms such as joint pain, dental enamel defects, skin rashes, etc. Some people with celiac disease experience depression, anxiety, and even nerve issues. This wide range of effects highlights how celiac disease is a systemic (whole body) condition.

5. Fact: Not everyone with celiac disease has symptoms.

It’s a common misconception that celiac disease always causes noticeable symptoms, but not everyone with celiac disease has obvious symptoms. Some people with celiac disease may not feel sick at all, but their intestine could still be damaged.

This is why doctors may recommend tests for celiac disease, even in the absence of symptoms, particularly if there is a family history of celiac disease or if the individual has certain other autoimmune conditions.

By knowing the facts about celiac disease, you can help your child live a healthy and happy life while managing this condition.