Perhaps the most intriguing thing about the history of celiac disease in the US is its absence—from medical textbooks, the vast majority of research studies, and the news—from 1952 through the 1990’s. Why did celiac disease disappear from the healthcare consciousness as well as the public eye?
Today the Gluten Free RN takes a closer look at the story of celiac disease, starting with the first doctor to understand it as a dietary issue back in 1888. She highlights the important progress made by pediatricians Willem Dicke who is credited with identifying gluten as the issue and Sidney Haas who honed the gluten-free diet to exclude specific carbohydrates. Nadine explores the period of time when celiac disease seemingly ‘went dark’ in the United States, discussing the handful of renegade authors and researchers who continued to study the disease despite its absence from health education.
Nadine also explains the resurgence of gluten sensitivity to the public consciousness in the 1990’s, when medical professionals from abroad questioned the claim that there was no celiac disease in the US. She covers our evolving understanding of the symptoms of celiac disease and the woefully inadequate training around gluten in medical and nursing schools. Listen in to find out why the mass screening proposed by the National Institute of Health never materialized and how the for-profit healthcare system impacts celiac patients. Let’s honor the practitioners who dedicated their careers to understanding celiac disease and write our own history through celiac advocacy!
The first doctor to identify celiac disease
The role of Dr. Sidney V. Haas in advancing celiac treatment
The conclusions of a New York Times article from May of 1950
The grains that contain gluten
How Dr. Willem Dicke developed the gluten-free diet
The myth that celiac is a childhood disease
Elaine Gottschall’s work in developing the Specific Carbohydrate Diet
The elimination of celiac disease from medical training
The Paleo diet Nadine suggests for celiac and gluten-sensitive patients
Hilda Cherry Hill’s 1976 book Good Food, Gluten Free
The classical symptoms of celiac disease
The expanded picture of how celiac disease may present
The genes that indicate a predisposition to celiac disease
How recognition of celiac disease resurfaced in the 1990’s
The 2004 NIH Consensus Statement on Celiac Disease
How the US for-profit healthcare system impacts celiac patients
Nadine’s advice for celiac patients around choosing healthcare providers
What has changed since the NIH Consensus Statement in 2004
Dr. Rodney Ford’s role in celiac advocacy
Nadine’s guidance for vegetarians and vegans
The vulnerable populations particularly at risk for celiac disease and non-celiac gluten sensitivity
“Celiac Disease: Most Children are Now Cured but Cause is Still Unknown” in The New York Times
Management of Celiac Disease by Sidney Valentine Haas and Merrill Patterson Haas
“Whatever Happened to the Cure for Coeliac Disease? in Nutritional Therapy Today
“The Erie Country Survey of Long-Term Childhood Illness” in the American Journal of Public Health
Good Food, Gluten Free by Hilda Cherry Hills
Dr. Alessio Fasano’s 2003 Celiac Study
2004 NIH Consensus Statement on Celiac Disease
Gluten: ZERO Global by Dr. Rodney Ford
International Celiac Disease Symposium
“Small Intestinal Mucosal Abnormalities in Relatives of Patients with Dermatitis Herpetiformis” in Gut
“Adult Coeliac Disease and Other Disorders Associated with Steatorrhoea” in the British Medical Journal
The University of Chicago: Celiac Disease Facts and Figures
“A History of Coeliac Disease” in Digestive Diseases
“Dermatitis Herpetiformis in Two Patients with Idiopathic Steatorrhoea” in the British Medical Journal
‘Your Skin on Gluten’ on YouTube
Melodies of the Danube Gluten-Free Cruise with Nadine
Dough Nation: A Nurse's Memoir of Celiac Disease from Missed Diagnosis to Food and Health Activism