The History of Celiac Disease EP041

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 ...