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!
What’s Discussed:
The first doctor to identify celiac disease
- Samuel Gee, 1888
- Established dietary approach to treatment
The role of Dr. Sidney V. Haas in advancing celiac treatment
- All carbs and fats had been eliminated from celiac diet
- Haas discovered that kind of carbs made difference
- Experimented with fats, learned that could be absorbed
- 370 celiac cases studied at Bellevue, only 2.2% not cured
The conclusions of a New York Times article from May of 1950
- Late 1800’s, celiac disease ‘incurable and often fatal’
- By 1950, 90% cured and deaths rare
- Cause still unknown
The grains that contain gluten
- Wheat
- Barley
- Rye
- Oats (cross-contamination)
How Dr. Willem Dicke developed the gluten-free diet
- Dutch pediatrician during WWII
- No access to grains during famine, previously sick children improved
- Mothers realized that when grains returned to diet, sickness returned
- Dicke credited with determining that gluten causes damage
The myth that celiac is a childhood disease
- Patients do not ‘grow out of it’
- When gluten is reintroduced, disease returns (along with other disorders)
Elaine Gottschall’s work in developing the Specific Carbohydrate Diet
- Grains containing proteins other than gluten have negative effect on digestive tract
- Gottschall’s model removes all grains
- Paleo/whole food diet considered ideal
The elimination of celiac disease from medical training
- Stopped teaching in 1952
- Debate over carbs vs. proteins
- Same paragraph appears in medical textbooks from 1952-2008
- Still taught incorrectly (if at all) in medical, nursing schools
- Should be part of every differential diagnosis
The Paleo diet Nadine suggests for celiac and gluten-sensitive patients
- Gluten-, dairy-free
- Whole food
- Low carb, super-good high fat
- Appropriate supplements to remedy deficiencies
Hilda Cherry Hill’s 1976 book Good Food, Gluten Free
- Hill cured invalid husband with gluten-free diet
- Whole food, no grain derivatives
The classical symptoms of celiac disease
- Fatty stool
- Malabsorption
- Short stature
- Low energy
- Infirm
The expanded picture of how celiac disease may present
- Osteoporosis
- Short stature
- Delayed puberty
- Iron deficiency anemia
- Hepatitis
- Recurrent canker sores
- Elevated liver enzymes
- Dental enamel defects
- Peripheral neuropathy
- Celiac cerebellar ataxia
- Seizure disorders
- Migraine headaches
The genes that indicate a predisposition to celiac disease
- HLA-DQ2
- HLA-DQ8
- Occur in 30-50% of the population
How recognition of celiac disease resurfaced in the 1990’s
- Gastroenterologists from abroad asking questions
The 2004 NIH Consensus Statement on Celiac Disease
- Determined that celiac disease grossly underdiagnosed in US
- Proposed mass screening, healthcare education program
- Mass screening never materialized (‘too cost-prohibitive’)
How the US for-profit healthcare system impacts celiac patients
- System profits from incorrect diagnoses
- Celiac tends to be last thing we test for
- Patients often spend hundreds of thousands of dollars out-of-pocket
Nadine’s advice for celiac patients around choosing healthcare providers
- Many still don’t know how to manage celiac disease
- Look for practitioner of functional/integrated medicine
What has changed since the NIH Consensus Statement in 2004
- Little real change
- More media attention, some doctors testing
- Medical professionals still not educated in testing, follow-up
- Little support, assistance for patients in adopting gluten-free diet
Dr. Rodney Ford’s role in celiac advocacy
- Pediatrician, gastroenterologist and allergist
- Promotes ‘gluten zero world’
- Gut-brain-skin connection
Nadine’s guidance for vegetarians and vegans
- Work with nutritionist to be sure not malnourished
- Consider changing diet for optimal health
The vulnerable populations particularly at risk for celiac disease and non-celiac gluten sensitivity
- Children
- Williams, Turner or Down syndrome
- Developmentally delayed, cystic fibrosis communities
- Autoimmune patients
Resources:
“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
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
