Celiac Disease Isn’t Just Gluten: Why Diagnosis Is Delayed—and Symptoms Linger

When “Just Go Gluten-Free” Isn’t Enough

New data show that even people with clear risk factors for celiac disease are waiting years to be diagnosed. And for many women, people of color, and those in the South, the delay is even longer. Meanwhile, a groundbreaking study reveals that symptoms often persist because of a lasting “immune scar” in the gut—even after going gluten-free.

👇 What’s going on—and what this means for your health:

Delayed Celiac Disease Diagnosis Still Common—Even for High-Risk Groups

A study presented at Digestive Disease Week 2025 by Weill Cornell Medicine and Beyond Celiac reviewed health insurance claims from over 9,000 people with celiac disease. It found the average time to diagnosis is three years, even in patients with symptoms or conditions that should have prompted early testing.

That delay is worse for:

• Women vs. men

• Black and Hispanic patients vs. white patients

• Older adults vs. children

• Patients in the South vs. other U.S. regions

💡 Why this matters: Celiac disease can lead to malnutrition, anemia, infertility, neurological issues, and more—so early detection is critical.

High-Risk Symptoms and Conditions That Should Prompt Celiac Testing

Most people think celiac = digestive issues, but it’s much broader than that. Clinical guidelines say testing should happen if someone has:

• GI symptoms (pain, diarrhea, constipation)

• Iron deficiency anemia

• Neurological signs (ataxia, neuropathy)

• Mouth ulcers, unexplained weight loss

• Type 1 diabetes, autoimmune thyroid disease

• A family history of celiac disease

Even so, delays persist. “Failure to thrive” in children leads to quicker testing, but conditions like ataxia—a neurological sign—have the longest delays.

Why Celiac Disease Symptoms Persist on a Gluten-Free Diet

Published in Nature Immunology and funded by Beyond Celiac, a new study from Oxford University found that people with celiac disease often retain an immune “scar” in their gut lining—even while avoiding gluten.

This “scar” includes:

• Persistent inflammation

• Ongoing activation of CD8+ killer T-cells

• Disrupted gut lining and impaired nutrient absorption

• Increased sensitivity to trace gluten exposure

Understanding the Immune Response in Celiac Disease

The research used single-cell and spatial transcriptomics to map immune and epithelial cell behavior in the small intestine. In simple terms, that means scientists looked at individual cells in the gut to see exactly how they behave, communicate, and change in people with celiac disease—even after removing gluten from the diet.

Notable findings include:

• Expanded CD8+ T-cell populations targeting the gut lining

• Immune “control centers” that persist after gluten removal

• Disrupted epithelial function and chronic inflammation

• Potential new targets for future celiac disease treatments

🔬 This may explain why current therapies (like the gluten-free diet) work for some—but not all—patients.

Celiac Disease Disparities Reflect a Broader Health Equity Problem

These findings underscore persistent health inequities in autoimmune care:

• Women’s symptoms are still dismissed or misattributed

• Communities of color face systemic delays in diagnosis

• Children and families struggle to get early intervention

Celiac disease is not just a digestive disorder—it’s a complex autoimmune condition that needs more than “just go gluten-free” as a solution.

Follow Beyond Celiac for Research and Advocacy

If you want to stay informed, Beyond Celiac is one of the most impactful organizations pushing forward:

• High-quality, peer-reviewed research

• Advocacy for earlier testing and diagnosis

• Insights into treatment innovation and unmet needs

📥 Share your story: Have you experienced celiac disease, gluten sensitivity, or persistent symptoms despite going gluten-free? Reply to this email or join the conversation in our Fempower Health Slack. If you haven’t yet joined, be sure to sign up!