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.
The reason it took so long to make sense of my symptoms was threefold: One was the time I grew up in (I was a child of the '70s); another was my own determination to be seen as strong; and last, my condition fell through the medical cracks.
Living with symptoms of a mystery illness.
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.
One morning, I woke up and realized that my issues spanned my entire body:
How I finally received a diagnosis.
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.
The first thing he said during my follow-up visit was: "You're not going to like the results." At that point, I didn't care what he told me, as long as I could feel better. That's when I found out I had celiac disease, and my antibodies were off the charts.
So, why did it take so long?
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.
Would I have been compliant if I were diagnosed as a teen? Probably not. Would I have been as sick later on if I had made different choices earlier in life? Definitely not.
How I've learned to manage my symptoms.
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.
One way I do that is by eliminating gluten (which allowed me to start eating oranges again!). After getting rid of gluten, I eliminated candida, dairy, and other food sensitivities, as well as mold, heavy metals, pesticides, and environmental toxins. Each layer of treatment has improved my gut and overall health even more.
The ongoing impacts of my invisible illness.
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.
There's also a tremendous amount of anxiety associated with giving up control—all rooted in the fear that my celiac will flare up again. If I get "glutened" (the term for accidentally consuming gluten), it can take me a long time to recover. During that time, my gut is irritable, my brain doesn't seem to function optimally, and my emotions are a mess. The worst exposure took me three months to heal from. It's much better now, and I'm down to 24 hours, but I still carry some post-traumatic stress disorder (PTSD) as a result.
What I want other people to know.
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.
In my case that cause is celiac, but for others it might be non-celiac gluten sensitivity, lactose intolerance, IBS, the list goes on. If you're suffering from underlying mystery symptoms, work with a primary care physician, gastroenterologist, or a functional medicine doctor to do genetic testing, food sensitivity testing, as well as celiac, infection, or gut imbalance testing. Just don't give up until you figure out the source!
Wendie Trubow, M.D., MBA is a functional medicine gynecologist. She received her M.D. from Tufts University in 2000 and has been practicing functional medicine since 2009. After all these years, she is still passionate about helping women optimize their health and their lives. There are so many different challenges in a woman’s life: work, home, relationships, spirituality, health, and they all matter! While her credentials allow Trubow a solid medical backdrop to help women achieve vitality, her own health journey has also inspired and supported her methods of care.
Through her struggles with mold and metal toxicity, Celiac disease, and a variety of other health issues, Trubow has developed a deep sense of compassion for what her patients are facing. When she's not helping patients in her practice (5 Journeys) you can find Trubow alongside her husband and their four kids, creating a beautiful ecosystem in our yard that provides nourishment to both our body and soul. She also co-authored the book Dirty Girl: Ditch the Toxins, Look Great, and Feel Freaking Amazing!