By Amy Burkhart, MD, RD | Dr. Burkhart is the only physician in the United States who is also a registered dietitian and board-certified in integrative medicine.
Celiac Symptoms Are Not Always Digestive
A celiac diagnosis isn’t always straightforward, and my story is proof.
Most people think you must have digestive issues to have celiac disease, including doctors. But digestive symptoms are the first sign only half of the time. That was my story, and the path I took to finally being diagnosed was long, convoluted, and at times, frightening. But a delayed celiac diagnosis, sometimes by years, sometimes by decades, is not unusual. Not even close.
Celiac disease affects 1 in every 100 people, yet only 18% of those who have it actually know it. The average delay from first symptom to diagnosis is several years, and for many patients, it stretches far longer. People see doctor after doctor, collect diagnosis after diagnosis, and never get the right answer. That is the norm, not the exception.
I know this firsthand. Even as a physician and registered dietitian trained at top medical institutions, I remained ill and undiagnosed for over 10 years. My colleagues and I had no explanation for my symptoms. Celiac disease simply wasn’t on anyone’s radar, including mine. At one point, my health deteriorated to a genuinely dangerous place.
If a medically trained professional can go a decade without a correct diagnosis, it’s no surprise that so many patients spend years being told their symptoms are something else entirely or that nothing is wrong at all.
I’m sharing my story because someone reading this may be in that same position right now. Struggling. Searching. Dismissed. A diagnosis changed my life. It can change yours, too.
Celiac disease is sneaky. But it is findable. And the first step is knowing how often it gets missed.
Early Celiac Disease Symptoms Are Easy to Miss
Slow growth and mood changes are common symptoms in children
Celiac disease doesn’t always announce itself dramatically. Many people with celiac disease don’t recall feeling obviously sick as children, yet looking back, the signs were often there. Slow growth, behavior changes, or a persistently bloated belly are two of the earliest and most commonly overlooked symptoms of celiac disease in kids. But celiac disease onset doesn’t always begin in childhood. It can start in adulthood, too, and when it does, its symptoms can be equally dismissed.
Symptoms in adulthood are also frequently dismissed by doctors and patients alike. Fatigue, vague digestive complaints, headaches, menstrual irregularities, joint pain, or general fatigue are routinely attributed to stress, a busy lifestyle, or anxiety. Patients are told they don’t “look” sick. Many are sent home with reassurances that nothing is wrong.
The symptoms are real, but they’re easy to explain away, and without celiac disease on the radar, even well-meaning healthcare providers can miss it entirely for years.
Click Here for a List of Celiac Symptoms
Fatigue, headaches, anxiety, and depression are among the most frequently overlooked early symptoms of celiac disease, and they’re also among the easiest to attribute to other causes.
Many people with undiagnosed celiac disease spend years struggling with one or all of the following common celiac symptoms: profound exhaustion, menstrual irregularities, iron deficiency anemia, migraines, hair loss, joint pain, or other pain of unknown reason. These symptoms are real and often debilitating, yet they rarely trigger a celiac workup. Instead, they get filed under stress, lifestyle, diet choices, or the demands of whatever season of life the patient is in.
Iron deficiency anemia is a telling example. It’s a common presentation of celiac disease in adults, particularly women, yet it’s routinely attributed to vegetarian diets, heavy periods, or simply not eating enough iron-rich foods. The possibility that the gut itself isn’t absorbing iron properly, because celiac disease is silently damaging the small intestine, often never comes up.
This pattern repeats itself across years, sometimes decades. Symptoms accumulate. Explanations get recycled. And because each individual complaint seems explainable on its own, no one steps back to look at the full picture.
That’s the particular cruelty of early, vague celiac symptoms, they’re just plausible enough to explain away. And for many patients, they continue to be explained away long past the point when they should have led to answers.
Celiac vs. Gluten Sensitivity; How Can You Tell the Difference?
Why Celiac Disease is Frequently Misdiagnosed
Most people with celiac disease see numerous doctors before ever receiving a correct diagnosis. The journey is rarely straightforward. It often involves years of worsening symptoms, a revolving door of specialists, and a collection of diagnoses that don’t quite fit.
Celiac disease is frequently misdiagnosed as other conditions, such as multiple sclerosis, Lyme disease, IBS, chronic migraines, POTS syndrome, and mental health disorders, among the most common. Each misdiagnosis can set a patient back months or years. Treatments for the wrong condition don’t help. Some make things worse. Meanwhile, the small intestine continues to sustain damage, and the patient continues to decline.
Neurological symptoms are particularly misleading. Dizziness, stroke-like episodes, and cognitive changes can send patients down a neurology path that leads nowhere because the root cause is happening in the gut, not the brain. POTS syndrome and cardiovascular symptoms like low blood pressure are well documented in celiac patients, adding yet another layer of diagnostic confusion.
Another of the most persistent misconceptions that delays diagnosis is the belief that celiac disease must begin in childhood. It doesn’t. Celiac disease can onset at any age, and in many cases, it doesn’t become symptomatic or diagnosable until adulthood, sometimes not until middle age or later.
When celiac disease is finally identified, it often comes as a surprise to everyone involved, including the treating physicians. Celiac blood tests showed markedly elevated antibodies, confirmed by intestinal biopsy. A patient’s new diagnosis can often represent the first celiac diagnosis some clinicians have ever made. That’s not a reflection of poor medicine; it’s a reflection of how dramatically underrecognized this disease remains, even within the medical community.
That gap in awareness among both patients and providers is exactly what makes education so critical. Every missed diagnosis represents years of unnecessary suffering that a better-informed system could have prevented.
How One Celiac Diagnosis Can Transform Your Family's Health
Recovery from celiac disease is real, and for most people, it’s remarkable. A strict gluten-free diet allows the intestine to heal, nutrients to absorb properly again, and energy to return. It’s rarely an overnight transformation, but with time and commitment, most people go on to feel genuinely well, often better than they ever have.
One of the most powerful and meaningful consequences of a celiac diagnosis is what it means for the people around you. Because celiac disease is genetic, one diagnosis frequently unlocks answers for an entire family. A single confirmed case can lead to multiple family members being tested and diagnosed across parents, siblings, children, and beyond. In some families, one diagnosis has changed the health trajectory of three generations of people who had no idea celiac disease was the source of their struggles.
That ripple effect is profound. Family members who spent years feeling unwell finally have an explanation and a solution. Children can be screened early, before years of damage accumulate. Future generations can be monitored from the start, sparing them the prolonged diagnostic odyssey that so many before them endured.
This is why, despite everything that comes with it, a celiac diagnosis is ultimately something to be embraced. It is an answer. It is a path forward. And in many cases, it is the gift that keeps giving, one diagnosis protecting and improving the lives of an entire family, for generations to come.
How To Get Tested For Celiac Disease
One important note before pursuing testing: don’t stop eating gluten before getting tested for celiac disease. Blood tests measure the immune response to gluten, and if gluten has been removed from the diet, the results can be falsely negative, delaying or preventing an accurate diagnosis. Testing must be done while on a gluten-containing diet to be reliable.
If any of these symptoms sound familiar or if there’s been a long, frustrating search for answers that hasn’t led anywhere, celiac disease is worth considering. It affects 1 in every 100 people, making it far more common than most realize. Yet 80% of those who have it remain undiagnosed, many of them cycling through the same pattern of vague symptoms, missed diagnoses, and unanswered questions described throughout this article.
That doesn’t have to be the story. Testing is simple. Answers are possible. And a diagnosis doesn’t just change one life, it can set off a chain reaction that protects an entire family and the generations that follow.
Don’t wait years for an answer that could come today.
