Legal Issues Surrounding Celiac Disease EP019

Gluten Free RN

In Italy, it takes only two to three weeks to get diagnosed with celiac disease. In the United States, however, it typically takes nine to 15 years. Why is there such a huge discrepancy? And what are the legal ramifications for practitioners who overlook celiac disease and non-celiac gluten sensitivity, causing patients unnecessary pain and suffering?

On this episode, Nadine explores the legal issues surrounding celiac disease as well as the potential reasons for delayed diagnosis in the US. She also explains the differences between universal healthcare and the for-profit system and how each appears to influence celiac diagnosis.

Listen and learn what medical practitioners need to know about celiac disease and gluten sensitivity in order to avoid being sued for malpractice, the value of standardization in celiac testing and follow-up care, and how you can get involved in advocating for universal coverage.

What’s Discussed:

How the US health insurance system works

• Usually purchased through employer
• Loss of job often means loss of coverage
• ACA provides coverage for many who were uninsured
• For-profit system

Why Nadine is an advocate for a single-payer system

• People treated in ER with or without insurance (we pay regardless)
• US healthcare is very expensive, yet outcomes poor

Celiac disease diagnoses around the world

• Italy: 2-3 weeks; standardized follow-up care
• US: 9-15 years; patients endure numerous other tests, misdiagnoses, unnecessary medications
• Canada: effective early diagnosis, but follow-up care lacking

The excuses practitioners use to avoid diagnosing celiac disease

• Don’t believe in it, despite research and documentation
• Don’t want to learn about another illness
• Gluten-free diet is too difficult for patients

Symptoms Nadine encountered as an ER nurse that may have signaled celiac disease

• Migraine headaches
• Abdominal pain
• Neurological disorders (headaches, difficulty with balance)
• Fever

Why practitioners should be concerned about malpractice suits if celiac disease goes undiagnosed

• Ignorance is not a defense
• Michael Marsh contends that failure to do appropriate screening signals liability
• Avoid by learning the basics of celiac disease, how to diagnose and follow-up

Why celiac disease needs to be part of differential diagnosis for every patient

Indicators of celiac disease and non-celiac gluten sensitivity

• HLA-DQ2 or HLA-DQ8 gene denotes predisposition for celiac proper
• AGA antibody suggests gluten sensitivity

Maladies suffered by patients whose celiac disease went undiagnosed

• Mental health issues
• Neurological disorders
• Seizures
• Balance issues
• Abdominal pain
• Incorrect diagnosis of Crohn’s or colitis
• Hemorrhoids
• GERD
• High blood pressure
• Heart attack
• Stroke
• Cancer

Why standardization of testing and follow-up care is a necessity

• Screenings are often misinterpreted
• Celiac patients who follow a gluten-free diet are often told that they have been cured or that the initial test was a false positive when follow-up shows antibodies in normal range

The story of Nadine’s 70-year-old celiac patient

• Diagnosed with celiac disease by biopsy, but received no follow-up care
• Suffered from significant neurological issues (e.g.: gluten ataxia, falling)
• Nadine recommended standard lab tests
• Primary care doctor refused
• Patient returned to Nadine in distress
• Doctor culpable for patient’s neurological damage

Why celiac patients should consider advocating for universal coverage

The differences between celiac diagnoses under universal vs. for-profit insurance systems

• Financial benefit to early diagnosis under universal system (i.e.: UK, Canada, Italy)
• No benefit to early diagnosis for insurers under for-profit structure

Resources Mentioned:

Physicians for a National Health Program

Health Care for All Oregon

Mid-Valley Health Care Advocates

Additional Resources:

“Economic Benefits of Increased Diagnosis of Celiac Disease in a National Managed Care Population in the United States” from the Journal of Insurance Medicine

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Books by Nadine:

Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism