I sat in my car outside the doctor’s office with a binder full of food and symptom journals. The third specialist in six months had just told me my labs looked normal. I was in my thirties, exhausted, brain-fogged, and my joints ached. My thyroid was already acting up, and I knew something was wrong. Nobody mentioned celiac. The small-intestine biopsy that finally gave me an answer came almost by accident, after I pushed for a referral I barely knew to ask for.

That experience left me turning over the same question for years. How did we, as a culture and a medical system, settle on such a narrow picture of a disease that can show up in dozens of different ways? I started digging into the history, and what I found reshaped how I think about every symptom my family has ever brushed off.

The First Description: Aretaeus of Cappadocia

The word “celiac” comes from the Greek koiliakos, meaning “suffering in the bowels.” A physician named Aretaeus of Cappadocia, writing in the second century AD, described patients with chronic diarrhea, pale stools, and wasted bodies. He called it a “celiac diathesis” and believed the illness happened because the body stopped absorbing nourishment. That concept - what we now call malabsorption - was remarkably close to the truth.

For over seventeen centuries, that was the only picture anyone had. Celiac was a mysterious and often fatal pediatric ailment. Doctors could describe it, but they could not explain it, and they could not stop it. The pattern was set: celiac was a child’s disease that looked a specific way. If you did not fit that mold, you were not sick in that particular way.

Samuel Gee and the First Dietary Clue

A shift came in 1888 when English physician Samuel Gee delivered a lecture titled “On the Coeliac Affection.” He detailed case after case in children and then wrote a sentence that would echo through the next hundred years: “To regulate the food is the main part of treatment.” Some of his young patients improved when milk and farinaceous foods were reduced. He had no way to pinpoint why, but the link between diet and the disease was made.

The limitation was that Gee still viewed celiac as exclusively a childhood condition with one severe presentation. If you were an adult, or if your symptoms showed up outside the gut, celiac did not exist as a diagnosis. That assumption locked the medical picture in place for decades.

The Dutch Hunger Winter and the Wheat Connection

The real breakthrough came from catastrophe. During the Dutch famine of 1944-45, wheat, bread, and flour all but disappeared from the Netherlands. A pediatrician named Willem-Karel Dicke had been tracking his celiac patients for years and noticed they improved dramatically during the famine. When wheat flour returned after the war, they relapsed.

Dicke and his colleagues published their findings, linking a specific food - wheat - directly to celiac disease for the first time. A mechanism was on the table. Yet the textbook picture stayed stubbornly narrow. A celiac patient was still a small child with diarrhea, a distended belly, and failure to thrive. If you did not match that pattern, you were unlikely to be tested.

The Rash, the Anemia, and the Marsh Classification

Starting in the 1950s, small clusters of case reports began to crack that picture open. Dermatologists identified dermatitis herpetiformis, a blistering, intensely itchy skin rash, and connected it to the same gut damage seen in celiac children. Then hematologists noticed that some adults with unexplained iron-deficiency anemia - resistant to supplementation - had flattened intestinal villi on biopsy. Suddenly, celiac was not just a gut problem.

In 1992, pathologist Michael Marsh published a classification system describing progressive stages of small-intestine damage, from increased intraepithelial lymphocytes (Marsh 1) to total villous atrophy (Marsh 3). That framework standardized diagnosis, but it also revealed something unsettling. Patients could have measurable intestinal injury without the classic digestive complaints. The symptom net was widening, even if clinical practice lagged behind.

The Serologic Revolution and the Celiac Iceberg

The 1990s brought the tissue transglutaminase (tTG) antibody test, a blood screen that made large population studies possible. When researchers started testing broadly, the old prevalence estimates fell apart. A 2012 NHANES-based study published in the American Journal of Gastroenterology placed U.S. prevalence at about 0.7 percent - roughly 1 in every 141 people. Worldwide prevalence sits near 1 percent. The Celiac Disease Foundation estimates that only about 30 percent of those with the condition have received a diagnosis.

Those numbers gave rise to the celiac iceberg model. The visible tip is the fraction of people with classic gut symptoms. The submerged mass represents those with atypical, silent, or extraintestinal manifestations - the ones who do not look like the textbook case. Some of those submerged symptoms are the ones I hear about most from other moms: chronic fatigue, brain fog, migraine, joint pain, peripheral neuropathy, and persistently elevated liver enzymes. A 2014 meta-analysis in Clinical Gastroenterology and Hepatology found that iron-deficiency anemia alone occurs in up to 40 percent of celiac patients at diagnosis. Yet because they do not point obviously to the gut, these symptoms are often treated one by one without anyone connecting the dots.

What a Two-Thousand-Year History Means for Your Kitchen Table

The average adult with celiac disease spends six to ten years chasing a diagnosis, according to data from Beyond Celiac. For me, the gap was years of misdiagnoses - thyroid, PCOS, chronic stress - until the biopsy gave certainty. My daughter Kolbie’s path looked different. She was already living with Type 1 Diabetes, so routine screening caught her celiac antibodies early. That early catch was rare and happened only because awareness of the Type 1 Diabetes-celiac link has grown.

When I unpack this history, the timeline stops feeling abstract. It explains why so many adults still hear “that’s probably IBS” or “you’re run down from the kids.” A two-thousand-year footprint of celiac as a childhood-wasting disease still shapes what clinicians look for, even as the research has long since painted a broader picture. If you are in the messy middle - exhausted, holding a binder of notes, asking whether your symptoms make sense - you are part of a century-long reframing that is still unfolding.

Where the Story Goes from Here

Screening guidelines continue to evolve, and more primary care doctors are ordering tTG tests as part of a workup for fatigue, anemia, or neurological complaints. That shift represents a real consequence of the historical redefinition: from a single digestive ailment to a systemic, immune-mediated condition with dozens of entry points.

In our family, the kitchen became the place where we rebuilt our relationship with food after diagnosis. I wanted ramen my daughter could actually eat and seasonings that did not hide gluten or soy behind words I could not pronounce. That kitchen project turned into the free Clean Monday Meals Recipe App, where my recipe collaborator Chef Cayt and I have put hundreds of gluten-free, dairy-free, family-friendly recipes, together with meal plans and auto-generated shopping lists. It is there for anyone staring down a new diagnosis and wondering what to cook tonight.

If my own history taught me anything, it is that the symptoms you are told are just stress deserve a second look - and that food, made with real ingredients you recognize, can be the first place you start to feel like yourself again. I would love for you to come cook with us. You can sign up for the free app at cleanmondaymeals.com/pages/meal-planning-app. As we say, let’s make eating well feel doable - and delicious.