Signs You May Have 'Silent' Celiac Disease and Not Know It

Shock was my initial reaction to the celiac diagnosis I opened my Kaiser inbox to back in October of 2020. Before then, I’d thought the only way a person could have the condition was if they became sick immediately after consuming gluten-containing foods.

After I read my positive test results, the countless pastries, candies, and processed foods I devoured as a kid came to mind. So did heaping plates of late-night burgers paired with curly fries (devoured by friends and me during our college years at U.C. Davis).

When living In Uruguay, my daily gluten consumption was colossal: alfajores cookies for breakfast or mid-day snacks, pizza dinners with my Spanish-speaking housemates, and tall bottles of Patricia beer guzzled during the weekly tambores parades.

How none of that had made me ill, I couldn’t wrap my head around.

As I’d learn though, of the 1 in 100 people who have celiac, some are born with it, but others develop it later in life. Additionally, about 66 percent have “silent celiac disease” — meaning they don’t have digestive symptoms, or they experience symptoms in seemingly unrelated systems of the body like the skin or nervous system.

As a kid, I didn’t consistently show all the classic, stereotypical signs of celiac, but I did show others — as well as some of the nontraditional ones. For a few years, I had eczema and GERD. Throughout childhood, I always had a little belly (which my doctor never said anything about). I remember throwing up after eating Red Boy pizza one night, and again another night following consumption of a slice of chocolate pie at the Nutcracker Ballet with my babysitter. Plenty of other times though, I ate gluten without getting sick.

The gut-brain connection means that some mental health issues can be attributed to poor gut health, and 80 percent of serotonin is produced in the gut. As a teenager and young adult, my mental health suffered, with depression hitting me as early as seventh grade. My thinking was slow and sludgy many days, which I attributed to tiredness or simply having not slept well the night before.

I especially felt this way after lunch, in high school science class — slow, brain foggy, and unable to take in instructions. I assumed it was just an intelligence issue, or me not being great at science.

Due to the common conception that celiac must present with gastrointestinal symptoms, detection of the illness eludes many people for years. It’s estimated that up to 80 percent of those with celiac are currently unaware. This is concerning and needs to be addressed.

As Jefferson Adams put it on celiac.com, “Celiac disease is one of the most common chronic health disorders in western countries, and also one of the most under-diagnosed. Up until the late 90s, medical schools taught that celiac disease was rare, and only affected about 1 in 2,500 people.”

Undiagnosed celiac can lead to many other issues — cancer, heart disease, arthritis, diabetes, and Parkinson’s among them.

“If people with the disease continue to eat gluten, studies show that their risk of gastrointestinal cancer is 40 to 100 times that of the normal population,” Adams wrote.

The road to recovery after years of undiagnosed celiac can be long. That’s why it’s important to catch it before it has a chance to wreak havoc and result in complications.

Parents: pay attention to signs like brain fog, attentional difficulties, behavioral problems, and skin rashes. All can be celiac symptoms, even if their appearance doesn’t seem to immediately follow the consumption of gluten.

You can ask your doctor for the Tga / Iga blood test, which measures the presence of antibodies that a celiac person’s body produces in response to gluten.

For much of my life, I never really felt like I thrived. There was always this feeling that I was living below my full potential, or walking around as a dimmed down, shadow version of my true self.

Sometimes I wonder how much farther along in life I might be if someone — anyone — had thought to test me for celiac at a much earlier age. If doctors had taken a closer look (which is their job). When you’re a kid and teenager, you haven’t yet learned to self-advocate; others must advocate for you. I don’t blame my parents, as they didn’t know the signs (most people don’t; part of why I write this is to inform more parents). But doctors are specifically trained to recognize them.

Given the significantly high rate of undiagnosed celiac, I wish the simple blood test was universally offered as part of mandatory screening — but until then, we can take steps to bring that number down. Know the signs to look for to ensure the highest quality of life possible for your kid.