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Blog Post #3: Refractory & Non-Responsive Celiac

What happens when someone with celiac disease sticks to a strict gluten-free diet - and still doesn't get better?

Insights from the Columbia University International Symposium on Celiac Disease – June 2025. Written by Caleigh McAulay, RD, Health Promotions Manager for Celiac Canada.


In May 2025, researchers, clinicians, and advocates from around the world gathered both in-person and virtually at Columbia University’s International Symposium on Celiac Disease. The event explored the latest advancements in diagnosis, treatment, global trends, and the future of care for people living with celiac disease and related conditions.
Celiac Canada attended to bring back insights for our community.

 

In this post, we share how experts addressed the challenges of non-responsive celiac disease (NRCD) and the rate but serious condition known as refractory celiac disease (RCD).

Here's what we learned:

  • Non-responsive celiac is more common than you think: Up to 30% of people with celiac disease may continue having symptoms even after removing gluten. In many cases, the cause is ongoing accidental gluten exposure — but not always.

 

  • Refractory celiac is rare, but real: In RCD, the immune system continues damaging the gut even without gluten. It’s estimated to affect less than 1% of people with celiac disease.

 

  • New diagnostic tools and treatments are emerging: Specialists are working on better ways to detect RCD and distinguish it from other gut disorders. Targeted therapies — including medications that modulate the immune response — are in early trials.

"It's important to validate the experiences of those who don't feel better on a gluten-free diet. There's more support available, and more understanding now than even a few years ago," says Caleigh McAulay, RD.

The Takeaway

If you or someone you know is struggling with symptoms despite being gluten-free, don’t assume it’s all in your head. Help is out there – and science is catching up. 

 

We’ll be watching the research closely and continuing to advocate for people with complex celiac cases.

Stay Tuned for Blog Post #4: Kids, Families & The Future: Early Screening and Prevention of Celiac Disease, coming in our September Connects!

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