May brings the celiac disease community together for awareness and advocacy
Every May, the celiac disease community comes together for Celiac Awareness Month—a time dedicated to education, advocacy, and raising public understanding of a condition that affects approximately 1 in 100 people worldwide, yet remains dramatically underdiagnosed.
The Problem: A Massive Diagnosis Gap
Despite being one of the most common genetic autoimmune conditions, celiac disease remains widely misunderstood and underdiagnosed.
The Numbers
According to research from the Celiac Disease Foundation and epidemiological studies:
| Statistic | Significance |
|---|---|
| 3 million Americans | Estimated total with celiac disease |
| ~500,000 diagnosed | Only 17% know they have it |
| 83% undiagnosed | Millions suffering without answers |
| 6-10 years | Average time from symptoms to diagnosis |
| 6.4 years | Average patient sees 4+ doctors before diagnosis |
These aren’t just statistics—they represent millions of people experiencing preventable symptoms, risking long-term complications, and lacking the information that could transform their health.
Why People Go Undiagnosed
Several factors contribute to the diagnosis gap:
Symptom variability: Celiac disease doesn’t always present with digestive symptoms. It can manifest as:
- Fatigue and anemia
- Bone loss and joint pain
- Skin conditions (dermatitis herpetiformis)
- Neurological symptoms (peripheral neuropathy, ataxia)
- Infertility and miscarriage
- Depression and anxiety
Many patients and physicians don’t connect these symptoms to celiac disease.
Outdated medical education: Many healthcare providers were taught that celiac disease is rare and primarily affects children with severe digestive symptoms. Current research shows it’s common, can develop at any age, and presents variably.
Symptom normalization: People who have been sick for years often don’t realize they’re sick. Chronic bloating, fatigue, and digestive issues become “just how I feel.”
Misdiagnosis: Symptoms frequently lead to diagnoses of IBS, chronic fatigue, or other conditions without celiac testing.
Long-Term Consequences of Delayed Diagnosis
Untreated celiac disease increases risk for:
- Osteoporosis and bone fractures
- Intestinal lymphoma
- Infertility and pregnancy complications
- Neurological damage
- Other autoimmune conditions
- Nutritional deficiencies
Early diagnosis allows intestinal healing and reduces these risks.
Beyond Diagnosis: Ongoing Challenges
Even after diagnosis, people with celiac disease face significant challenges:
Food Safety Challenges
- “Gluten-free” doesn’t mean celiac-safe — The FDA’s 20 ppm standard may not protect all patients
- Restaurant dining carries risk — Cross-contact in shared kitchens cannot be eliminated through communication alone
- Hidden gluten sources — Medications, supplements, personal care products, and processed foods
- Label reading burden — Constant vigilance required for every food purchase
Social and Psychological Challenges
- Dismissiveness: “It’s just a fad diet” / “A little won’t hurt”
- Social exclusion: Difficulty participating in meals, events, travel
- Anxiety around food: Hypervigilance, fear of accidental exposure
- Relationship strain: Impact on family dynamics, dating, social connections
Systemic Challenges
- Inadequate research funding — Celiac disease receives less funding relative to prevalence than many conditions
- Limited treatment options — Diet remains the only proven treatment
- Insurance coverage gaps — Gluten-free food premiums not covered
- Inconsistent medical care — Many GI specialists lack deep celiac expertise
Why Awareness Matters
For Undiagnosed Individuals
Every person who learns about celiac disease and recognizes symptoms is one step closer to diagnosis. Awareness campaigns have directly prompted people to request testing, finally explaining years of unexplained illness.
For Healthcare Providers
Medical education on celiac disease is often inadequate. Awareness efforts help physicians:
- Recognize varied presentations beyond classic digestive symptoms
- Test appropriately (IgA tTG while patient is eating gluten)
- Understand the seriousness of the condition
- Provide adequate follow-up care
For Research and Treatment
Increased awareness drives:
- Research funding for treatments beyond diet
- Clinical trial enrollment for emerging therapies
- Policy attention for labeling laws and accommodations
For Daily Life
Greater public understanding means:
- More restaurants taking cross-contact seriously
- Better school and workplace accommodations
- Reduced stigma and dismissiveness
- Improved product availability
Organizations Leading Awareness Efforts
Celiac Disease Foundation (CDF)
Celiac Disease Foundation provides:
- Patient and healthcare provider education
- Advocacy for research funding
- Annual awareness campaigns
- Support services and community building
Beyond Celiac
Beyond Celiac focuses on:
- Research initiatives and clinical trial matching
- Educational campaigns and resources
- Community programs
- Accelerated treatment development advocacy
Gluten Intolerance Group (GIG)
Gluten Intolerance Group contributes through:
- GFCO certification program for celiac-safe products
- Local support groups
- Restaurant training programs
- School accommodation resources
How You Can Help
Individual Actions
Share your story: Personal narratives resonate. If comfortable, share your diagnosis journey on social media, with friends, or in community settings.
Educate your circle: Help others understand:
- Celiac disease is a serious autoimmune condition, not a lifestyle choice
- Cross-contact matters—“a little” causes real damage
- The gluten-free diet is medical treatment, not a trend
Encourage testing: If someone describes chronic symptoms, suggest they ask their doctor about celiac testing—while still eating gluten.
Support organizations: Donate to or volunteer with celiac disease research and advocacy groups.
Healthcare Professional Engagement
Share educational resources: Provide materials to local clinics about recognizing celiac disease.
Express appreciation: Thank providers who diagnose and treat effectively—positive reinforcement matters.
Request better care: If your provider lacks celiac expertise, request referral to a celiac-knowledgeable gastroenterologist.
Policy Advocacy
Contact representatives: Support legislation for:
- Clearer food labeling (including restaurants and alcohol)
- Research funding for celiac disease
- School and workplace accommodation requirements
Participate in advocacy days: Organizations like CDF organize congressional advocacy efforts.
Social Media Toolkit
Ready-to-Share Messages
Twitter/X:
May is #CeliacAwarenessMonth. 83% of people with celiac disease are undiagnosed—millions suffering without answers.
If you have unexplained symptoms, ask your doctor about celiac testing (while still eating gluten).
#CeliacDiseaseCeliac disease isn't a food preference—it's an autoimmune condition where gluten causes intestinal damage.
1 in 100 people have it. Most don't know.
This May, spread awareness that could change someone's life.
#CeliacAwarenessMonthInstagram/Facebook:
May is Celiac Awareness Month.
The facts:
• 1 in 100 people have celiac disease
• 83% are undiagnosed
• Average time to diagnosis: 6-10 years
• Untreated, it can cause serious complications
Symptoms aren't always digestive. Fatigue, anemia, brain fog, joint pain, and skin issues can all be signs.
If this sounds familiar, ask your doctor about celiac testing. One blood test could change everything.
Share to spread awareness.
#CeliacAwarenessMonth #CeliacDisease #AutoimmuneDiseaseHashtags
Primary:
- #CeliacAwarenessMonth
- #CeliacDisease
Secondary:
- #CeliacAwareness
- #AutoimmuneDisease
- #InvisibleIllness
- #GetTested
- #KnowCeliac
Resources
For Patients
- Celiac Disease Foundation — Education, advocacy, support
- Beyond Celiac — Research, clinical trials, community
- Gluten Intolerance Group — Certification, support groups
For Healthcare Providers
- American College of Gastroenterology Clinical Guidelines
- Celiac Disease Foundation Healthcare Practitioner Resources
- North American Society for the Study of Celiac Disease
Key Dates
- May (full month): Celiac Awareness Month
- September 13: National Celiac Disease Awareness Day
Take Action This May
The awareness you spread could be the reason someone finally gets diagnosed.
This May:
- Share your story
- Educate one person
- Support one organization
- Encourage someone to get tested
The diagnosis gap is solvable. It requires awareness, advocacy, and action.
Together, we can create a world where everyone with celiac disease knows they have it—and can access the care and resources they need.
Sources
- Rubio-Tapia A, et al. “The prevalence of celiac disease in the United States.” American Journal of Gastroenterology. 2012.
- Green PHR, Cellier C. “Celiac Disease.” New England Journal of Medicine. 2007.
- Celiac Disease Foundation. “Facts and Figures.” Accessed January 2026.
- Beyond Celiac. “Celiac Disease Symptoms.” Accessed January 2026.
- Catassi C, et al. “A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease.” American Journal of Clinical Nutrition. 2007.
- Ludvigsson JF, et al. “Small-intestinal histopathology and mortality risk in celiac disease.” JAMA. 2009.