The disease we now know as celiac disease has affected humans for thousands of years. The journey from mysterious wasting illness to understood autoimmune condition reveals how medical science progresses—through observation, serendipity, and persistent research.
This history matters because understanding how we came to know what we know provides context for current treatment guidelines and ongoing research.
Timeline: Key Discoveries in Celiac Disease
| Year | Discovery | Significance |
|---|---|---|
| ~100 AD | Aretaeus of Cappadocia describes “koiliakos” | First recorded clinical description |
| 1888 | Samuel Gee publishes modern description | Established diet as key to treatment |
| 1908 | Christian Herter describes “intestinal infantilism” | Expanded clinical understanding |
| 1924 | Sidney Haas develops “banana diet” | First effective dietary treatment |
| 1940s | Willem Dicke proves wheat connection | Identified the cause |
| 1954 | John Paulley describes villous atrophy | Established pathology |
| 1960s | Gluten identified as triggering protein | Specified the molecular cause |
| 1989 | HLA-DQ2/DQ8 genes linked to celiac | Established genetic basis |
| 1997 | Tissue transglutaminase (tTG) identified as autoantigen | Enabled blood test screening |
| 2000s-Present | Research into therapies beyond diet | Ongoing investigation |
Ancient Descriptions (100 AD)
Aretaeus of Cappadocia
The earliest known description of celiac disease comes from Aretaeus of Cappadocia, a Greek physician practicing around 100 AD. He used the term “koiliakos” (κοιλιακός), from the Greek “koelia” meaning abdomen.
His description recorded patients who:
“If the stomach be irretentive of the food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs.”
Aretaeus documented:
- Chronic digestive disturbance
- Failure to absorb nutrition from food
- Wasting despite eating
- Pale, foul-smelling stools
He couldn’t identify the cause, but his clinical observations remained accurate for nearly 1,900 years.
The Long Silence
For nearly two millennia after Aretaeus, celiac disease remained a medical mystery. Patients suffered and died without diagnosis. The condition was likely often attributed to:
- “Consumption” (tuberculosis)
- General failure to thrive
- Mysterious wasting illness
- Weakness of constitution
Without understanding the cause, there could be no effective treatment.
The Victorian Era: Modern Medicine Engages
Samuel Gee’s Landmark Paper (1888)
The modern medical understanding of celiac disease begins with Dr. Samuel Gee at Great Ormond Street Hospital in London. In 1888, he published “On the Coeliac Affection”, which remains a landmark in celiac disease history.
Gee’s key observations:
- The disease primarily affected children ages one to five
- Symptoms included chronic diarrhea, wasting, and failure to thrive
- Diet was central to treatment: “If the patient can be cured at all, it must be by means of diet”
- Starchy foods seemed problematic: “the allowance of farinaceous food must be small”
Gee was remarkably close to the truth—decades before anyone understood what gluten was.
A curious observation: Gee noted that one child recovered when fed only Dutch mussels, inadvertently discovering that removing grain from the diet allowed healing.
Christian Herter’s Expansion (1908)
American physician Christian Herter published further observations in 1908, describing “intestinal infantilism”—children who failed to grow and develop due to chronic intestinal disease.
The condition was known briefly as “Gee-Herter disease” in recognition of both physicians.
Dietary Breakthroughs (1920s-1950s)
The Banana Diet (1924)
Dr. Sidney Haas, an American pediatrician, observed that children with celiac disease often improved dramatically on a diet consisting largely of bananas. His “banana diet” became standard treatment.
Why it worked (understood in retrospect):
- Eliminated wheat and other gluten-containing grains
- Provided easily digestible carbohydrates
- Excluded most processed foods containing hidden gluten
The banana diet saved lives, but physicians didn’t understand why it worked—they were treating the symptoms without knowing the cause.
Willem Dicke: The Wartime Breakthrough (1940s)
The crucial discovery came from an unexpected source: World War II.
Dr. Willem-Karel Dicke, a Dutch pediatrician, was treating children with celiac disease during the German occupation of the Netherlands. During the Dutch famine of 1944-1945—the “Hunger Winter” when bread was scarce—Dicke made a remarkable observation:
His celiac patients improved when they couldn’t get bread.
When the war ended and wheat became available again, their symptoms returned.
This natural experiment led Dicke to systematic research. Working with biochemist J.H. van de Kamer, he conducted controlled dietary studies, carefully removing and reintroducing different foods.
In 1950, Dicke published his doctoral thesis definitively proving that wheat caused celiac disease. He later expanded this to include rye and barley.
“The gruelling wartime conditions had provided the controlled experiment that peacetime could never have supplied.”
For the first time in history, the cause was known.
Understanding the Mechanism (1950s-1990s)
Villous Atrophy Discovered (1954)
With the cause identified, researchers investigated what wheat did to the body.
In 1954, British physician John Paulley performed intestinal biopsies on celiac patients, revealing the characteristic flattening of intestinal villi—the finger-like projections that absorb nutrients.
The development of practical biopsy:
- 1956: Margot Shiner developed the peroral biopsy capsule
- This made intestinal biopsy safer and more practical
- Biopsy became the diagnostic gold standard—a position it maintains today
Gluten Identified (1960s-1970s)
Wheat contains many proteins. Which one caused the damage?
Through careful research, scientists identified gluten—specifically the gliadin fraction—as the triggering protein. They also established that:
- Barley hordeins cause the same reaction
- Rye secalins cause the same reaction
- These grains share similar protein structures
Genetic Basis Established (1980s-1990s)
Why do only some people develop celiac disease while others eat gluten without problems?
Researchers identified two genetic markers—HLA-DQ2 and HLA-DQ8—strongly associated with celiac disease.
Key findings:
- Approximately 95% of celiac patients carry HLA-DQ2
- Most of the remainder carry HLA-DQ8
- Without these genes, celiac disease cannot develop
- However, approximately 30-40% of the general population carries these genes
- Other factors (environmental, additional genes, gut microbiome) determine who develops disease
Autoantigen Discovery (1997)
The discovery that tissue transglutaminase (tTG) is the autoantigen in celiac disease was transformative:
- Enabled development of blood tests (tTG-IgA) for screening
- Confirmed celiac disease as an autoimmune condition
- Explained the mechanism: gluten is modified by tTG, making it immunogenic
- Opened new research directions
Key Figures in Celiac Disease History
Samuel Gee (1839-1911)
British physician at Great Ormond Street Hospital who published the first modern clinical description of celiac disease. His observation that diet was key to treatment preceded the actual discovery of the cause by 62 years.
Willem-Karel Dicke (1905-1962)
Dutch pediatrician whose wartime observations and subsequent research proved the connection between wheat and celiac disease. His work transformed celiac disease from a mysterious wasting illness to a treatable condition with a known cause.
Margot Shiner (1923-2009)
British gastroenterologist who developed the peroral biopsy technique, making intestinal biopsy a practical diagnostic tool and enabling accurate diagnosis for millions.
Ludvig Sollid (1957-present)
Norwegian immunologist whose work on the immunology of celiac disease has been fundamental to understanding how gluten triggers the immune response.
Modern Developments (2000s-Present)
Improved Diagnostics
Modern celiac disease diagnosis involves:
- Blood tests (tTG-IgA, DGP-IgA/IgG) for screening
- Genetic testing (HLA-DQ2/DQ8) to help rule out celiac disease
- Intestinal biopsy remains the gold standard for confirmation
- Marsh classification for grading intestinal damage
Understanding Has Deepened
Current research focuses on:
- The role of the gut microbiome in celiac disease development
- Why some genetically susceptible people develop disease and others don’t
- Environmental triggers beyond gluten
- Non-classical presentations and extra-intestinal manifestations
Ongoing Research Directions
While the gluten-free diet remains the only proven treatment, research continues on:
- Enzyme therapies to degrade gluten
- Immunomodulatory approaches to prevent immune reaction
- Tight junction modulators to reduce intestinal permeability
- Potential vaccine approaches
What History Teaches Us
About Medical Progress
- Observation precedes understanding: Accurate clinical descriptions existed 1,800 years before the cause was known
- Unexpected circumstances advance knowledge: The Dutch famine provided the “natural experiment” that proved the wheat connection
- Science builds incrementally: Each discovery enabled the next
- Treatment can precede full understanding: The banana diet worked before anyone knew why
For People with Celiac Disease Today
- We benefit from accumulated knowledge: Accurate diagnosis, understanding of cross-contact, availability of safe products
- The diet works because science confirmed it: Not tradition or assumption—controlled research
- Monitoring matters: Blood tests and biopsy allow us to verify intestinal healing
- Research continues: Current treatment may not be final treatment
Perspective on Current Guidelines
Modern guidelines—strict gluten avoidance, attention to cross-contact, regular monitoring—derive from this research history. They’re not arbitrary restrictions but evidence-based medical recommendations built on decades of investigation.
The Ongoing Story
The history of celiac disease is not complete. Current research may add new chapters:
- Therapies that allow occasional gluten exposure
- Better understanding of who develops disease and why
- Treatments targeting the immune response rather than just the trigger
- Potential prevention strategies
Understanding this history provides context for both current treatment and future possibilities.
The story of celiac disease discovery demonstrates how medical science progresses—through observation, serendipity, and persistent inquiry. Today’s patients benefit from this accumulated knowledge.
Sources
- Losowsky MS. “A History of Coeliac Disease.” Digestive Diseases. 2008;26:112-120.
- van Berge-Henegouwen GP, Mulder CJJ. “Pioneer in the gluten free diet: Willem-Karel Dicke 1905-1962.” Gut. 1993;34:1473-1475.
- Green PHR, Cellier C. “Celiac Disease.” New England Journal of Medicine. 2007;357:1731-1743.
- Sollid LM, et al. “Evidence for a primary association of celiac disease to a particular HLA-DQ alpha/beta heterodimer.” Journal of Experimental Medicine. 1989;169:345-350.
- Dieterich W, et al. “Identification of tissue transglutaminase as the autoantigen of celiac disease.” Nature Medicine. 1997;3:797-801.
- Paulley JW. “Observations on the aetiology of idiopathic steatorrhoea.” British Medical Journal. 1954;2:1318-1321.
- Sollid LM. “Coeliac disease: dissecting a complex inflammatory disorder.” Nature Reviews Immunology. 2002;2:647-655.