What Years With Undiagnosed Celiac Taught Me About The Need For A More Integrated Medical System
A person cannot be adequately supported until their ailment is accurately identified and uncovered.
baranq / Shutterstock It’s 7:47 pm, and there are wires attached to me.
Though I crave my typical end-of-the-day shower, I must find another way to self-soothe. I do some yoga, avoiding Superman and cobra poses (as these could tear the wires off). The neighbor’s cat burrows into my chest only to encounter the coiling cables, which he tries to bite at. I gently escort him off.
The Holter monitor is one of several tests my doctor has ordered after a slew of symptoms had alerted me to disruption in my health.
At the start of the year, I’d begun to experience tinnitus. The brain fog that had cottoned my headspace for many years was persisting. So was the fatigue. Though I’d consulted with my doctor about these symptoms, routine lab work came back showing no abnormalities. I accepted this and didn’t push for further testing.
My symptoms now though were too numerous not to.
A month after the tinnitus came on, my hairdresser expressed shock at the amount of hair I was losing. Her alarmed reaction sent me back to my doctor.
Could hair loss and tinnitus be related? I asked him. I’m also tired and foggy-headed a lot of the time, even after a full night of sleep. What could be causing that?
More tests were run. Nothing was found.
New symptoms arose in the months that followed: numbness and tingling in my left leg when lying down; carpal tunnel in my left hand when holding my phone; itchy skin; episodes of vertigo. I felt like I was dropping my keys more often than I used to. My sleep was disrupted; one night I woke up drenched in a cold sweat even though I had no fever.
I emailed my doctor again. And now here we were.
The following day, Holter monitor on, I head to the hospital.
While waiting in the lobby for my neck ultrasound, I look down at the monitor again and am brought back to the early 2000s, when I’d ascend the coiling hill to high school with a wire connecting my bulky headphones to the disc-man bouncing around inside my black Adidas gym bag.
While waiting I overhear a red-headed male nurse ordering a decaf coffee from the kiosk.
“Black, like my heart,” he specifies to the cashier, before quickly adding (in a tone of earnestness): “Just kidding, it’s bursting with love.”
When I hear him joke that regular coffee would have him bouncing off the walls, later on, I picture a fiery ball of energy in a white lab coat doing just that. Then I, too, compare myself to a hamster, scurrying from one testing station to another— wondering, as I sip from each beaker, which one will yield the proper medicinal cheese.
Later that week my test results come back. This time all isn’t normal. This time, one shows highly elevated TGA/IGA markers.
Celiac disease: the autoimmune disorder wherein the small intestine attacks itself after consuming gluten, making it difficult to absorb nutrients. Undetected and untreated, it can lead to complications like Parkinson’s. Multiple sclerosis. Even several types of cancers. The only cure is to adhere to a strict lifelong gluten-free diet.
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As I later would find, I’d likely had undetected Celiac for at least several years. My symptoms through the years included brain fog, acne, sleep disruption, depression, anxiety, extreme fatigue, and (to this day) chronic tinnitus in my right ear (that I’ve learned to tune out with a white noise machine at night).
As I myself had done when searching for the proverbial cheese, many patients (women especially) navigate a maze of doctors, tests, dismissals, and incorrect diagnoses before arriving at genuine answers. Some spend thousands of dollars and hundreds of hours trying to piece it together on their own.
They shell out hard-earned money (or money they don’t have) on screenings, x-rays, MRIs, and emergency room visits not covered by insurance, in desperate attempts to figure out what is wrong. It depletes finances, time, and emotional bandwidth.
“Between the two of us, we saw thirty-seven doctors before we got real answers. And in my case, sadly, the only real answers came from my own detective work and experience,” wrote Stephen Phillips, author of Chronic: The Hidden Cause of the Autoimmune Pandemic and How To Get Healthy Again.
Women of color are hit especially hard. According to PBS Wisconsin:
“Dark-skinned patients face particular difficulties in getting a Lyme diagnosis. Identifying the red target symbol over light skin tone is easy for light-skinned people, but not so with dark skin tones. A recent UCLA study found 34 percent of Black patients with Lyme disease had neurological complications compared to just 9% of whites, suggesting the disease may not have been recognized for many Black patients in earlier stages when it’s easier to treat.”
I’m not alone in having gone undiagnosed for a significant time. Studies have shown there is an average 6 to 10-year delay for patients to be accurately diagnosed with Celiac.
There are friendlier interpretations as to why this is.
Many autoimmune conditions present overlapping symptoms, for one. Except for Celiac, their detection requires more than just a single lab (and yet remarkably, even with a straightforward blood test widely available to screen for Celiac, 80 percent of people remain undiagnosed). Testing for diseases like Lyme requires a more rigorous and complicated process than a simple one-and-done test.
For another, with Celiac specifically, some who have it (myself included) don’t even present with GI symptoms. Or they feel mainly fatigued after eating a gluten-containing product, as opposed to outwardly or obviously sick (additionally in my particular case, the foggy head, headaches, and lethargy were more an ever-present and chronic state than a direct and immediate after-effect of gluten consumption).
Sometimes, though, the lag in diagnosis is partially attributable to time-pressed, hurried doctors either not giving enough weight to patients’ symptoms or not taking it upon themselves to zoom out and connect the dots.
I’d include myself among the luckier patients. My most recent doctor never told me my symptoms were all in my head. Nor did he ever deny the reality of what I was experiencing. I would have liked for a bit more proactiveness on his end—for instance, maybe he, rather than I, could have been the one to suggest certain tests, after hearing a description of my various symptoms.
Still, for the most part, he ran every test I asked for. He even once said to me: “What you’re experiencing is real, whether or not a test shows it.” It was kind of him, and I know that sadly, not every patient shares this experience.
Many I’ve talked to in the Celiac community have had doctors who brushed off their complaints for years.
Some dismissed them as hypochondriacs or attributed their symptoms to a psychosomatic condition best treated with antidepressants.
My job as a medical interpreter also puts me face to face with the invisible affliction of chronic pain on a daily basis— and while I’ve seen doctors respond with compassion and a willingness to dig deeper into potential causes, I’ve witnessed others too easily dismiss the sufferer, particularly when she is a woman.
I acknowledge that many doctors are simply practicing according to what they were taught.
I think it’s less that they don’t care about their patients than the fact that there are certain structural limitations to the U.S. model, which these doctors are working within. Chronic illness is poorly understood, under-researched, and underfunded—and unfortunately as Ramey phrased it, “you can’t get funding to research a disease that isn’t considered serious or real— but a disease is not likely to be considered serious or real if there is no good research or clinical trials associated with it.”
Because of this, doctors can only do so much. Their prescribing of pills often comes from a desire to help relieve suffering.
Still, other times they seem to prescribe before even looking. For many patients, a trip to the doctor feels like a visit to the vending machine. In then out. Mark Hyman writes about how acid-blocking drugs are now “given like candy to anyone who ate too many hot dogs at a ball game.”
The same applies to other medications. When I was experiencing painful periods, for instance, my gynecologist talked up birth control like it was a panacea. Though I was all too relieved to accept a seemingly quick fix, I was also surprised. No tests had been done, nor had my hormone levels been checked. The doctor just prescribed it without any questions asked.
Even though treating the symptom provides momentary relief, it can also occlude the bigger picture understanding.
What’s also tricky about both diagnosing and providing support for chronic illnesses is that their symptoms ebb and flow — worse on some days than on others.
At times it’s like you’re not sick at all; you feel healthy and energetic. In other moments, you’re waking up twelve times throughout the night, then feeling like you need a crane to lift you from bed the following morning. A functional medicine doctor once asked me to describe my fatigue during my own months-long battle with SIBO (following my Celiac diagnosis) and I responded: it feels like I was kicked off the eight-story building by a pissed-off elephant.
Sometimes we can identify triggers. Sugar is one of mine; I’ve noticed that fatigue hits me incredibly hard about an hour or two after consuming large amounts of it (I also become more depressed and irritable). Sleep, exercise, stress levels, and social interaction can all play a role in symptom severity.
Other times though, there’s no trigger to be found at all. The suffering also isn’t visible. As Ramey wrote, “A typical disease presents something a doctor can observe, either under the microscope or in an examination. But not these diseases. There are no tumors, no elevated blood count, no pallor.”
When interviewing people for her book, she would pause and catch herself countless times when subjects presented as “normal”:
“I couldn’t help but think I’d finally found the lazybones who was just exaggerating to escape from the pressures of real life. I had to remind myself that this was exactly what people thought (and still think) about me,” she wrote.
As Meghan O’Rourke, author of The Invisible Kingdom put it, we are “bad at recognizing the suffering of others unless we are given clearcut clues and evidence. And so invisible illnesses often go unacknowledged, while less serious conditions get attention.”
The author describes how, when she once had a minor (but visible) injury, countless people rushed to her assistance. Yet during her worst moments, the fact that no one could see any physical evidence of struggle meant that she received little support.
It’s for these reasons that chronic illness sufferers often find themselves feeling unseen, and isolated—within the medical system specifically, but also in the culture at large. Ours is one that prefers quick fixes, more comfortable with clear-cut “before and after” recovery narratives. The concept of loose ends is undesirable and unsettling, especially here in America. I might even go so far as to call it Un-American.
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A way forward?
At elementary, middle, and high schools, the teachers of students who are struggling convene with the school psychologist, principal, coaches, and others. They meet to come up with a plan for how to best help the student. Similarly, at the job I worked on several years ago, social workers, case managers, and psychologists all came together to map a way forward for their clients.
I’ve wondered why western medicine can’t implement this as a practice— patients’ doctors meet and discuss their findings. Each brings their puzzle piece to the center of the table. They connect the pieces to gain a more comprehensive understanding of what the patient needs, and thereby develop a treatment plan.
“My patient has hives,” the dermatologist would report.
“She also has brain fog,” the neurologist might add.
“GERD and stomach upset over here,” the gastroenterologist announces, moving her piece toward the center of the table.
In the end, they step back and take in the picture that all their pieces have formed. That picture might not shout lupus, Lyme, or scleroderma straight out—but it will at least point them onto a path of inquiry that might yield further clarity down the road.
When doctors prescribe a medication for a symptom, on the other hand — and the symptom resolves temporarily — it’s as if they’re not even looking at the path.
Why is it so out of the question to suggest a model similar to this? Holistic and alternative healthcare is somehow seen as the more “woo-woo” and “out there” approaches. Yet in my mind, the lack of inter-communication between patients’ various doctors, as well as the fact that we are still sequestering organs and treating them as independent, seems more rudimentary and short-sighted.
Maybe not altogether wrong, but at the very least less wise.
None of my symptoms have completely debilitated me. The brain fog and fatigue have slowed me down, and to a certain extent detracted from my quality of life. As far as extreme pain though, the closest I got to that was the year following my celiac diagnosis— when I would wake with cold sweats some nights, and exhaustion unlike any I’d ever experienced before.
I’ve never had muscle pain, severe vomiting, or chronic migraines. Through my ups and downs, bodily pain never overtook me to the extent that I absolutely could not work. Nor was I ever relegated to laying in bed all day.
Some people are. For them, this is their reality for years with no end in sight.
Patients in their boats deserve better. Too many have lost years of their lives to mysterious illnesses that weren’t identified or managed soon enough until they eventually became bigger problems.
It’s my hope that one day the mainstream will understand and acknowledge the harm caused by this incomplete approach (though not intentional or malicious). The harm comes from a failure to thoroughly investigate, therefore neglecting to properly see. And as a result, these patients don’t receive the care they need. A person cannot be adequately supported until their ailment is accurately identified and uncovered.
The change will require a willingness to zoom out. It will require acceptance that some solutions require a bigger-picture focus. We need western medicine to become that view-master. More than anything, our collective health as well as that of future generations is worth that investment of time.
Eleni Stephanides is a freelance writer and Spanish interpreter whose work has been published in Them, Tiny Buddha, LGBTQ Nation, The Mighty, The Gay and Lesbian Review, and Introvert Dear among others.\