I was looking back at some of the articles I’ve written to spark a little creativity. Over the years, I’ve written more than a thousand pieces about celiac disease — from scientific research, to my experience in the Nexvaxx2 clinical trial, to the daily ups and downs of life as a celiac patient.

What’s mind-blowing is that, after all this time, virtually nothing has changed. Sure, some details have evolved, but the fundamentals of diagnosis and treatment have not. So what do we actually need to help the celiac community live better?

Better Testing Methods for Celiac Disease

Gluten challenges are tough for people to endure because they’re afraid of the painful symptoms that follow. Endoscopies are expensive and invasive. The “triple positive” diagnosis approach is helpful, but too many doctors still don’t know how to apply it correctly. That needs to change.

What I’d love to see is a simple, in-office blood test — something that, when paired with a gluten challenge, could give an immediate and accurate diagnosis. Research has been underway for years, and it’s time to make this reality accessible to patients.

Better Monitoring Tools for Celiac Disease

Just because your celiac blood tests are negative doesn’t mean your intestines have healed. The only reliable way to confirm healing is through endoscopy — again, expensive and invasive. Research has shown that these blood tests also fail to accurately reflect gluten-free adherence. You can have gluten creeping into your diet without those results changing.

We need a non-invasive, affordable way to measure intestinal damage — something that can be done easily and often.

Better Recognition and Treatment for Refractory Celiac Disease

Refractory celiac disease (RCD) is diagnosed when someone’s intestines haven’t healed after a year on a strict gluten-free diet. Officially, less than 1% of patients are diagnosed, but studies suggest that up to one-third of patients don’t heal even after five years.

With a proper RCD diagnosis, doctors can prescribe medications to promote intestinal healing. Whether to take those drugs or not is a personal decision, but patients should have that option.

Better Tools for Understanding Gluten Exposure

I’ve always recommended Gluten Detect tests as a way to determine whether your symptoms are due to gluten exposure or something else. Unfortunately, these tests are currently unavailable in the U.S. due to customs delays — a huge loss for the celiac community.

I truly believe tests like these should be part of every celiac patient’s “glutened kit”, so you can confirm whether you’ve been exposed to gluten or are dealing with another issue entirely.

I know I’ve rambled, and I have so much more to say. But I’ll leave it here for now. Besides a cure, what do you think needs to happen in the celiac world to make life better?

Keywords: celiac disease, refractory celiac, gluten detect, gluten exposure, celiac testing, celiac monitoring, gluten challenge, Nexvaxx2, gluten-free diet, intestinal healing

Tags: Celiac Disease, Gluten Free Living, Clinical Trials, Research, Refractory Celiac, Gluten Exposure, Celiac Testing, Health Advocacy