Debunking 5 Coeliac Disease and Gluten Free Myths
We separate fact vs. fiction with coeliac disease and the gluten free diet
Hey Gluten Free Fam,
Today we tackle 5 of the biggest myths surrounding coeliac disease and the gluten free diet. Despite growing awareness, there’s still a lot of misinformation out there that can make life harder for those with coeliac disease.
Whether you’re newly diagnosed, supporting a loved one, or just curious about what it really means to live gluten free, this blog will help separate fact from fiction.
Our goal is to help educate, spread awareness, and make gluten free life a little easier: one chat at a time.
This is also available in an extended audio version which you can listen to on Episode 167 of A Gluten Free Podcast.
Myth 1: “Coeliac Disease is an Allergy or an Intolerance”
A lot of people mistakenly think coeliac disease is a food allergy or intolerance. It's a chronic autoimmune disease. In many cases, it’s perceived as an ‘allergy’. For many living with coeliac, you may travel to a cafe or restaurant and people might refer to the disease as an allergy.
Given the unique nature of the setting and viewing the hospitality industry at large, we can understand why that is the case. With the risk of cross-contamination and without any prior context or knowledge about coeliac disease, this is fairly commonplace.
However, when it comes to dealing with medical professionals, it needs to be made abundantly clear that we are dealing with an autoimmune disease.
I’ve had conversations with medical experts in their field, and they have, in some cases, referred to coeliac disease as a gluten intolerance or gluten allergy. It is neither of those two. We must be specific.
For people living with coeliac disease, consuming gluten, something that is found in barley, wry, wheat and oats (oats remain a controversial and hotly debated subject within the Australian gluten free community), the small finger-like protections named ‘villi’ on the inside of our small bowel are flattened.
The result? We cannot properly absorb the necessary nutrients we need to be healthy. The ramifications are significant.
Various health impacts can include irritability, lactose intolerance, osteoporosis, iron deficiencies, thyroid complications, anaemia, diabetes, infertility, miscarriage and a host of other autoimmune diseases that are linked. In short, the health outcomes are bad when we’re unable to properly absorb those nutrients.
Myth 2: “You can have just One Bite or a Little Bit of Gluten Every Now and Then”
Many people believe a small amount of gluten won’t do any harm. Even trace amounts of gluten over an extended period of time can cause damage to someone with coeliac disease. Put simply - you need to live a strict gluten free diet at all times if you have coeliac disease.
Sadly, cross-contamination does and likely will happen. It can occur accidentally, whether you’re out at a restaurant, cafe or you’re a guest in someone’s home. Although we can ask all the right questions and put in lots of research beforehand we can be cross contaminated with mistakes outside of our control. Please remember - it’s not your fault and don’t be hard on yourself!
For the coeliac community, regular exposure to gluten is likely to lead to poor health outcomes. The reactions can be varied. Some people living with coeliac disease can be asymptomatic (approximately 20-30% of people with coeliac disease fit this category), while others can suffer extreme symptoms that manifest in their own way.
What matters here is understanding the potential damage caused to the gut and the villi versus simply experiencing symptoms. I went into depth on this very topic with Dr. Kim Faulker Hogg on Episode 164 of A Gluten Free Podcast.
While it’s important to recognise that you are on your own gluten free journey, it’s critical to be informed and aware of the health consequences associated with gluten exposure if you have an official diagnosis.
Myth 3: “You Grow out of Coeliac Disease”
Unlike some childhood allergies which people can sometimes outgrow, coeliac disease is lifelong. I’ve had conversations with people who have lived with the conditions for decades, and some of their health professionals would refer to it as a childhood disease.
They believed you could just grow out of it as you matured. That advice would lead people to return to gluten once their symptoms subsided.
Those individuals had to be reeducated and made aware that we are dealing with a lifelong disease. We are not at the stage where a cure exists, or an ability to reverse those genes. The only known management is strict adherence to a 100% gluten free diet for life.
The good news? You’re part of a gluten free family that continues to grow year by year all over the world. We’ll be here to support each other along that journey.
Myth 4: “People with Coeliac Disease only have Gut Symptoms”
Coeliac disease isn’t just about digestive issues - it can impact the entire body. There's over 200 known symptoms - from brain fog, anaemia, skin conditions (such as dermatitis herpetiformis), osteoporosis to infertility, miscarriage and beyond.
Gut complications are also a very common issue. From bloating to vomiting, constipation and diarrhoea, these are ailments that are often identified prior to an official diagnosis.
However, there are cases where neurological disorders also arise. Anxiety, depression, mood swings and irritability can occur when the gut microbiome is unsettled.
Gluten, acting as an inflammatory protein in those of us with coeliac disease, has the capacity to impact our physical and mental health in ways that experts are only just beginning to uncover.
For more insights on gut symptoms and how coeliac disease can manifest itself, listen to Episode 67 of A Gluten Free Podcast with Dr. Alessio Fasano MD. As a world-leading expert in the coeliac disease field for decades, he’s discovered that the gluten protein has a habit of crossing the blood-brain barrier and impacting our mental health in the process.
Myth 5: “Coeliac Disease is just about Going Gluten Free”
Let’s address the bottom line first: a strict 100% gluten free diet is currently the only known management for coeliac disease. There are no other drugs, remedies or interventions that are known and available today.
With this being said, managing coeliac disease is about way more than "just going gluten free.” We know this switch in lifestyle in and of itself is incredibly disruptive and overwhelming.
If you don’t live with a dietary restriction, or know someone in your life who does, it’s incredibly difficult to empathise and relate. On an emotional, physical and human level, the aftermath of a diagnosis is far-reaching.
Aside from a handful of helpful resources like Coeliac Australia, many people are left to feel alone and isolated. But what happens next? What is gluten? How do you identify it? How do you buy groceries and prepare meals for the week?
Do you speak to a nutritionist or dietitian? How do you explain this to friends, family and acquaintances when you’re out and about?
What we’ve discovered through personal experience is a major disconnect takes place between industries and institutions. From your GP to dietitian and other health professionals, the advice and support may be contradictory and downright confusing.
A chronic autoimmune disease will be messy and complex. So don’t allow people to convince you that it’s just about “going gluten free.” This isn’t helpful advice - either by friends and family or health professionals.
Addressing the Frustration of Coeliac and Gluten Free Myths
It’s time to talk about harmful myths and misconceptions about coeliac disease
So when we hear these common myths and misconceptions how do we react and respond? Ultimately, educating yourself and others takes the top priority. If you live with a dietary restriction that requires the complete elimination of gluten, know what is involved and what is required.
Is there light on the horizon? From what we can gather, yes. Modern medical science continues to push for advancements in coeliac disease (make sure you’re keeping up to date with us to hear the latest) but we require more advocates on the ground to improve testing and gauge accurate diagnosis so the community has tangible support.
Common myths and misconceptions, much like the five we have discussed today, need to be confronted directly. Approach these conversations in a calm way to the best of your ability. We know it’s hard to bite your tongue when you hear these myths.
Having respectful conversations where both perspectives are heard is the best way to move forward in awareness. We’ll get there together gluten free fam: one chat at a time!
