Celiac disease is sneaky; symptoms are not always in the digestive system.
A celiac diagnosis is not always easy to make. My story is no different. It is crazy, almost unbelievable. But, the convoluted path I took to a diagnosis of celiac disease is, unfortunately, common. This is part of the reason that only 18% of people with celiac disease actually know they have it. Celiac disease is not rare. It affects1 in every 100 people. That is one child in every 3 classes of school children, one person every busy day at the supermarket, or a daily commuter on a packed train car. One of every 100 people has celiac disease. Most of them don’t even know it.
I am sharing my story in the hope it helps someone struggling with symptoms that sound familiar. Maybe it will lead them to a diagnosis and a healthy recovery like mine.
My road to diagnosis and recovery is a testament to the sneakiness of celiac disease. It highlights a diagnosis that can evade even those entrusted with its discovery. It is also a perfect example of how one person’s diagnosis can impact multiple generations.
Even though I am a physician and a registered dietitian, my journey was dramatic, prolonged, and, at one point, left me approaching death.
I remained ill and undiagnosed for over 10 years, all while training at top medical institutions. My colleagues and I had no explanation for my symptoms. Arriving at a celiac diagnosis should have been simple. But, no one, including myself, had celiac disease on their radar.
Celiac disease awareness is vital to ensuring others don’t follow the same prolonged path to diagnosis. Research and education of the public and health care providers are the first steps.
Early Symptoms Are Vague
Slow growth and mood changes are common symptoms in children
I don’t recall being ill as a child. I was short and had a constantly bloated belly. But, I don’t remember feeling “sick”. But slow growth and bloating are two of the many symptoms of celiac disease.
By the time I started college at U.C. Berkeley to study clinical nutrition, my health was declining. Every health care provider at the time attributed my fatigue and vague symptoms to the rigors of college. I kept telling them I didn’t feel stressed.
They kept saying I didn’t “look” sick.
For a list of celiac disease symptoms, click here.
Fatigue, headaches, anxiety, & depression are common celiac symptoms.
Unfortunately, their presence is often blamed on “stress” and no further investigation is done.
I was so tired in medical school that I frequently had to lie down while working in the hospital. Thank goodness for hospital sleep rooms! I had terrible fatigue, menstrual cramps, iron deficiency anemia, migraines, hair loss, and weight loss. At one point, I was even called urgently to the student health center for a low blood count. They attributed it to being a vegetarian. No one ever looked further.
All symptoms were again blamed on the stress of being a medical student. I didn’t feel stressed about anything except my unusual symptoms!
Unfortunately, I remained undiagnosed for years longer. Symptoms continued through my residency training at Highland Hospital/U.C. San Francisco. In retrospect, I have no idea how I made it through.
Learn more here: Celiac disease symptoms vs gluten sensitivity symptoms; what is the difference?
Emergency Room Visits And Misdiagnoses
Most people see numerous doctors before they are properly diagnosed.
I got married and moved to Hawaii to work as an emergency room doctor. However, within a year of my arrival, I was in the ER as the patient instead of the doctor. I had been getting progressively sicker, but my symptoms were once again attributed to stress. I worked part-time and lived on the beach in Hawaii. I hardly felt stressed! But one day, I landed in the ER with sudden onset dizziness and stroke-like symptoms.
Celiac disease is frequently misdiagnosed as other conditions such as Lyme disease, IBS, chronic migraines, or a mental health disorder.
One specialist erroneously diagnosed me with multiple sclerosis and wanted to present my case at a conference because it was so unusual. Another misdiagnosed me with Lyme disease, which led to months of unnecessary antibiotics. During the treatment for Lyme disease, I went on disability because I was too ill to stand, let alone work. I was also put on heart medications for low blood pressure and diagnosed with POTS syndrome. I continued to get worse.
My colleagues were baffled, and while supportive, they had no answers. I began to see alternative practitioners and order tests on myself. One of the panels I ordered on myself happened to include celiac testing. When the celiac tests came back positive, I was confused. I thought it had to be diagnosed in childhood. I had a lot to learn.
The onset of celiac can happen at any age.
I carried the results to my doctor and asked her to run a celiac blood test. The results were so high they exceeded the lab’s scale. A gastroenterologist confirmed the diagnosis with a biopsy. Mine was the first case of celiac disease my primary care doctor had ever seen or at least the first she had diagnosed.
I was the subject of grand rounds (physician education) the following month because I was “the interesting case.” That was nothing I ever aspired to be. But, I was thankful my diagnostic odyssey would help educate other doctors. Since that time, it has become my focus to educate the public and physicians on celiac disease and gluten/wheat-related disorders.
The Effect On Future Generations
After many months on a gluten-free diet, I became healthy for the first time in my life. It wasn’t a quick fix, as many assume, but over time and focusing on my health, I got well.
As a result of my diagnosis, eight of my family members were diagnosed. This is a staggering number. My family members are no longer ill, and the radar is up for diagnosis in subsequent generations. My diagnosis helped three generations of my family live healthy, happy lives. It also means we will be prepared to screen future generations. Earlier diagnosis means less suffering and fewer long-term complications.
My diagnosis has positively affected my life, my family’s life, and that of multiple generations to come.
Sound familiar? Get tested
Don’t stop eating gluten before testing for celiac disease. If you do, the test isn’t accurate.
If any of these symptoms sound familiar or searching for answers to your health problems, consider celiac disease. It is present in 1/100 people. That is common. Eighty percent of people with celiac disease are not diagnosed. Don’t be one of them. Get tested.
Your diagnosis may help generations to come.