Hello there! Robyn here, and today I want to dive into something I’m deeply passionate about—a topic that has shaped much of my clinical practice and research over the past two decades.
If you’ve been following along with me for a while, you know I love to challenge conventional framework and think outside the box, especially when it comes to autoimmunity. Today, I’m tackling an autoimmune disease that is one of the most commonly misunderstood: Coeliac Disease.
The Historical Misconception We Need to Overcome
Let’s start with something that completely changed my perspective years ago, and that I hope will change yours too:
“That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.”
— Journal of Neurology, Neurosurgery & Psychiatry, 2002
This statement is revolutionary, isn’t it? For decades, we’ve been taught that Coeliac Disease is primarily a digestive-system disorder. But the research tells us something far more complex and fascinating is happening.
Coeliac Disease: The Clinical Chameleon
Coeliac Disease isn’t rare—it affects approximately 1-2% of the population (in fact the Lancet in 2023 has stated that number at 3% of the population in the UK).
But here’s the kicker: for every diagnosed case, there are potentially 3-7 undiagnosed cases lurking beneath the surface.
Why? Because CD is a true clinical chameleon. It can present as:
- Symptomatic (classic digestive symptoms)
- Asymptomatic (“silent” disease)
- Potential (developing form)
- Refractory (resistant to treatment)
And perhaps most importantly—for every symptomatic patient with CD, there are EIGHT patients with CD who have NO gastrointestinal symptoms whatsoever. Let that sink in.
Beyond the Gut: A Systemic Disease
When I teach practitioners about Coeliac Disease, I always emphasize that this is a systemic autoimmune disease that can affect virtually any and every tissue in the body. It’s not just about damaged villi in the small intestine!
Coeliac Disease and gluten sensitivity can manifest as:
- Dermatitis herpetiformis (skin)
- Osteoporosis (bone)
- Neurological disorders (brain and nervous system)
- Liver dysfunction
- Reproductive issues
- Psychiatric conditions
- And so much more
In fact, one of the most fascinating studies I’ve come across showed that most patients who present with neurological manifestations of gluten sensitivity have absolutely no gastrointestinal symptoms. The brain seems particularly vulnerable to gluten-related damage.
The Diagnostic Challenge
Here’s where things get tricky for practitioners. The conventional diagnostic approach to CD focuses on:
- Anti-Tissue Transglutaminase (tTG) antibodies
- Anti-Endomysial Antibodies (EMA)
- Duodenal biopsy showing villous atrophy
But there’s a critical problem with this approach: these markers are most accurate in end-stage disease with total villous atrophy.
One study evaluating Endomysial antibodies showed 100% sensitivity in patients with total villous atrophy, but only 31% sensitivity in patients with partial villous atrophy. This means cases can be missed or dismissed in the developing stages!
And remember—the developing stage may last for years or even decades. As one researcher put it: “every time the disease is clinically diagnosed in an adult, that person has for decades had disease in a latent or silent stage.”
The Microbiome Connection
The gut microbiome plays a crucial role in Coeliac Disease as well. Research shows:
- Intestinal dysbiosis is present in CD patients (both treated and untreated)
- Small Intestinal Bacterial Overgrowth (SIBO) is present in about 20% of CD patients
- This number jumps to 28% in those who remain symptomatic despite a gluten-free diet
This might explain why some patients continue to struggle even when strictly following a gluten-free diet—their gut ecosystem needs attention too!
What This Means For You
Whether you’re a practitioner or someone dealing with Coeliac Disease or gluten sensitivity, here’s what I want you to take away:
- Think beyond the gut. If you have unexplained symptoms—whether neurological, dermatological, psychiatric, or autoimmune—consider gluten sensitivity as a potential factor, even if you have no digestive symptoms.
- Testing limitations. Understand that conventional testing has limitations, particularly in early or developing cases. Multiple peptide testing may provide a more complete picture.
- Holistic approach. After diagnosis, the entire body needs attention—not just the gut. This includes digestive function, microbiome health, food reactions, liver and endocrine function, and stress management.
- Ongoing monitoring. Regular follow-up is essential, typically every 3-6 months initially, then annually. This helps catch complications early and ensures optimal healing.
The Future of Conventional Coeliac Care
Research in this field is advancing rapidly. Recent studies from 2024 show developments in new treatments beyond the gluten-free diet. Researchers are exploring:
- Transglutaminase 2 inhibitors
- mRNA vaccines for Coeliac Disease
- Enzymes that can help break down gluten
- Drugs to prevent intestinal damage after gluten exposure
While these treatments are still in development, they are an interesting development in the medical management of Coeliac Disease.
I do have a lot of questions about the bigger picture of using these meds in someone with Coelaic disease, but I’m keeping my eye on this with interest.
Final Thoughts
As I always say to my practitioner community: Coeliac Disease is a much greater problem than has previously been appreciated. It’s one of the most common lifelong disorders in both Europe and the US, and its impact extends far beyond the small intestine.
By recognizing its systemic nature and comprehensive impact, we can better serve those affected by this condition and potentially prevent years of unnecessary suffering.
If you’re a practitioner looking to deepen your understanding of autoimmunity and complex cases like these, I’d love to have you join me in The Autoimmune Academy. And if you’re someone navigating this condition yourself, know that a comprehensive approach that addresses your whole body—not just your gut—offers the best path forward.
Lastly, you can download my free e-book on Coeliac disease here.
Until next time,
Robyn
