Gluten-Free By Necessity: Busting 5 Myths And Misconceptions About Celiac Disease

1. It’s “just” an allergy/intolerance/someone being fussy

First things first, both allergies and intolerances aren’t to be taken lightly; the latter might not be life-threatening, but they can still make people unwell for days. The same goes for celiac disease, which is often mistaken for an intolerance, likely because of its digestive symptoms. However, celiac disease is actually an autoimmune disease.

When someone with celiac disease consumes gluten – which is a protein found in wheat, barley, and rye – their immune system mistakes it as a threat and attacks it. This reaction causes damage to the lining of the small intestine, affecting its ability to absorb nutrients from food. Sounds like a very understandable thing to be “fussy” about.

2. Just a bit of gluten won’t hurt

While it’s true that the symptoms resulting from eating gluten can vary between people with celiac disease, even a small amount of gluten can be damaging and may or may not lead to unpleasant symptoms (more on that later).

This isn’t just a short-term thing either; continuing to consume gluten (whether on purpose or being accidentally “glutened” on a regular basis) can have long-term health consequences. One of the most well-known is malabsorption, where the body doesn’t absorb nutrients properly because of the damage to the small intestine.

When not enough iron is absorbed, this can lead to iron deficiency anemia, with side effects such as lack of energy, heart palpitations, shortness of breath, and headaches. Then there’s osteoporosis, a health condition characterized by weak and brittle bones as a result of not absorbing enough key nutrients like calcium and vitamin D.

Similarly, damage to the digestive system caused by untreated celiac disease can also lead to malnutrition. This can have a wide range of effects on the body, such as slower recovery from infections and, in children, delayed growth or puberty.

3. It only affects the digestive system

That leads us on nicely to our next myth – that celiac disease only affects the digestive system. Osteoporosis and delayed growth are just two examples of how this isn’t the case; celiac disease can have an impact throughout the body.

That’s not to say that people don’t get digestive symptoms, like stomach pain, bloating, diarrhea, constipation, or vomiting, but these are far from the only symptoms, and aren’t necessarily experienced by everyone with celiac disease.

The condition can also present issues like tiredness, mouth ulcers, skin rashes, problems with tooth enamel, liver abnormalities, problems conceiving, and neurological issues like loss of coordination and numbness and/or tingling in the hands and feet. The latter is something that can also be seen in Type I diabetes, another autoimmune condition that is found in up to 10 percent of people with celiac disease.

4. You can “grow out” of it

A common misconception surrounding people who are diagnosed with celiac disease at a younger age is that they may well “grow out of it” – but that’s not true. Celiac disease is a lifelong condition, and the only way it can be managed is by sticking to a strictly gluten-free diet (don’t worry, that excludes smooches with gluten-eaters). There’s no cure.

That being said, researchers are looking into potential treatments – and thank goodness, because anyone who’s gluten-free knows that the bread is usually expensive and full of holes. Earlier this year, for example, biotechnology company Anokion announced positive data from its Phase 2 trial of a novel therapy for celiac disease.

The liver-targeted drug, dubbed KAN-101, is designed to make the immune system tolerant to gluten, stopping it from going off on one if someone with celiac disease wants to eat a bit of regular cake for once. The trial found that the drug was safe and tolerated at all the dose levels investigated, and preliminary analysis suggested that it also showed “clinically meaningful reductions across multiple individual symptoms”.

5. Barely anyone has celiac disease

This is another one that can be confirmed as a myth – in the US alone, an estimated 2 million people have celiac disease, and globally, it’s thought to affect about 1 percent of the population. However, the condition can often go undiagnosed, and a recent study in Italy is an example of that.

The study authors screened 4,438 Italian children aged 5 to 11 years old for biomarkers of celiac disease, and with further testing, confirmed that 1.65 percent of them had the condition. Not only is that higher than the global figure, but the authors also note that only 40 percent of that group had been diagnosed with celiac disease prior to the study. 

That’s not particularly surprising considering they also found that symptoms that could be a sign of celiac disease were just as common in children with the condition as in those without it, but it does highlight that even with symptoms, a significant chunk of people go undiagnosed – something that the authors argue could be resolved with a mass screening strategy.

All “explainer” articles are confirmed by fact checkers to be correct at time of publishing. Text, images, and links may be edited, removed, or added to at a later date to keep information current.

The content of this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of qualified health providers with questions you may have regarding medical conditions.