Living With Celiac Disease Is More Than Just Eliminating Gluten: Here's What I Want People To Understand

Celiac disease snuck up on me. It wasn't until I could barely function that I finally received a diagnosis.

I vividly remember lying on my bed as a teenager doubled over with sharp, shooting stomach pains. I linked it to oranges since the pain usually came shortly after eating them. While eliminating oranges from my diet helped a bit, the pain didn't go away entirely.

I also had a pretty significant case of anemia, which didn't respond to iron supplements. Behaviorally, I had poor impulse control—but hey, I was a teen. That's normal, right? Well, as a mother of teenagers now, I can certainly see that my behavior was not within normal ranges. (All I can say is that my parents were saints!)

Those teenage years were bad, but unfortunately, they weren't the worst of it. In fact, I can pinpoint when I really went off the cliff healthwise: I was a second-year resident, sitting at the nurse's station on the labor and delivery floor reviewing a fetal heart tracing. That's when I realized that my heart was racing—like, 130-beats-per-minute racing—while sitting still.

Thankfully, I was in a medical facility, and one of the doctors was kind enough to run tests on my thyroid and do an electrocardiogram (EKG) to check my heart. All of the results came back normal, so I started going to acupuncture but otherwise kept on as usual.

The next five years flew by: I moved back to Boston, graduated my medical residency, started my first job as an OB/GYN, bought and renovated a home, and had two kids. While everything in my personal and professional life seemed to be hitting a stride, my health was not. Those mystery symptoms, which began in my teenage years started to flare up—and things quickly went from bad to worse.

Aside from the fertility issues, I really hadn't been evaluated for these myriad symptoms because, well, I hadn't complained about them. It wasn't until the birth of my second child that I could no longer "power through." By this point, I knew I needed help.

My husband encouraged me to see his functional medicine mentor for a consult. Prior to that, functional medicine was just something my husband (also a doctor) was training in. Sure, I thought it was cool, but it didn't take long for this form of health care to become life-changing for me.

I could barely wait for the lab results to come in. The doctor did a full panel of labs, including minerals, nutrients, and food sensitivities. He also tested me for diabetes and celiac.

This is where falling through the medical system came into play. See, my father has celiac disease too, and it is a hereditary condition. Despite my family history, my stomach pain as a teenager, my racing heart as a young adult, my fertility issues later on, and all the other symptoms I silently suffered from—no one throughout the years ever thought to test me for it.

It's hard to believe I was diagnosed 15 years ago. Since the diagnosis, I have been extremely fortunate to have a supportive family—especially when I put a ban on gluten products coming into the home. My acne has cleared up, as has my joint pain, brain fog, asthma, thyroid disorder, anxiety, hair loss, fertility struggles, heart palpitations, and unwanted weight loss.

I still have a sensitive stomach, but it's so much better than it ever was—and most importantly, now I understand why and can take action to help mitigate the pain.

It hasn't been all sunshine and rainbows, though: Eliminating certain foods from your diet can be isolating. While I don't have a lot of attachments to foods, I've definitely experienced some grief because I'm different and can't participate in gatherings the way most people take for granted. 

Going out to eat? Um, only if they have a strict gluten-free control area. Going over to other people's homes for meals? Nope, that hardly happens, either. Being socially isolated has definitely been the hardest part of my diagnosis. 

I am thankful that I finally received a diagnosis but disappointed in how long it took to make sense of my symptoms. And I know I'm not the only one who has (or currently is) suffering from a misunderstood or undiagnosed case of celiac.

Approximately 1% of the population has celiac disease1, but only 16% of those who have it are actually diagnosed. Most people think of it as causing irritable bowel syndrome (IBS), but it can also cause osteoporosis, rapid weight loss, obesity, nutrient and mineral deficiencies, heart issues, other autoimmune diseases, and a whole host of life-altering issues. Yet, because it's invisible, it often goes undetected.

After receiving the diagnosis, I got my genes tested and learned I have two genes for celiac (one from each parent—thanks, guys!), which means each of my four kids also inherited a gene from me. Thankfully their father doesn't have the mutation.

On average, most individuals with celiac spend 10 years suffering from the time their symptoms start until the time they get diagnosed. Ten years! While they might be common, gut issues are not normal and there is always a cause.