Celiac disease is messy. It can develop at any age, in any ethnicity, in both men and women, with any symptom or no symptom at all. Every patient is different, and each one presents differently. There is nothing cut and dried about celiac disease, except that a 100% gluten-free diet is necessary for healing.
Nurses are in a unique position to make sense of this chaos and advocate for patients, recognizing possible celiac disease and non-celiac gluten sensitivity and recommending appropriate testing when necessary. Today, the Gluten Free RN covers the basics of celiac disease for nurses, explaining the frequency with which the disorder is misdiagnosed or goes undiagnosed for years. She walks us through the testing required for a diagnosis of celiac disease proper, who should undergo testing, and why one negative test doesn’t rule out the disease.
Nadine speaks to the 300-plus signs of celiac disease, reviewing the most common symptoms and the overlap between celiac disease and autoimmune disorders like type 1 diabetes. She also shares the discouraging statistics around the impact of undiagnosed celiac disease on fetal development and maternal health. Listen in to understand why Nadine encourages fellow nurses include celiac disease as part of their differential diagnosis, providing gluten-sensitive patients with a safe, gluten-free environment and a higher quality of life!
What’s Discussed:
The frequency with which celiac disease is misdiagnosed or goes undiagnosed
- 94% of people with celiac disease are undiagnosed
- Current estimate is 3% of US population
- Takes average of 9-15 years for diagnosis
The challenges around getting a diagnosis of celiac disease proper
- Requires genetic test, celiac antibody test and documented villous atrophy
- Celiac antibody test = 70% false negative in US
The chronic nature of celiac disease
- Patients must go 100% gluten-free for life
The 300-plus signs and symptoms of celiac disease
- Primarily a neurological disorder
Why celiac patients must be tested for potential nutritional deficiencies
- May need B12, Mg RBC, D3, Zn or I supplements
The detrimental impact of undiagnosed celiac disease on fetal development, maternal health
- 800-900% increase in miscarriage
- Increased risk of stillbirth, premature birth and neural defects
Where gluten is hiding
- Medications, personal care products and food items
Who should be tested for celiac disease
- Patients with mental health issues, developmental delays
- Anyone with an autoimmune disorder (e.g.: type 1 diabetes)
- Family members of celiac patients
Why one negative test doesn’t rule out celiac disease
- Can seroconvert at any time
How a gluten-free diet can benefit children with stunted growth
- Growth resumes if diagnosed before epiphyseal plates seal
Resources:
Celiac Disease and Non-Celiac Gluten Sensitivity for Nurses
Recognizing Celiac Disease: Signs, Symptoms, Associated Disorders & Complications by Cleo J. Libonati
Connect with Nadine:
‘Your Skin on Gluten’ on YouTube
Books by Nadine:
Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism
