The call came at the beginning of the week. Fortunately, I was between patients when my mother’s doctor called my clinic. My mom had scheduled an appointment for a pre-operative clearance prior to a carpal tunnel surgery. Her doctor was flustered and concerned: my mom had gained about 30 pounds and her abdomen was enlarged.
“I’m not sure if this is fluid or a mass, but I’m having her admitted to the hospital,” she said.
This news confirmed my own fears. About two weeks prior my husband, daughter, and I, had met my mother for dinner at a Mexican restaurant off I-94, about half way between her home in suburban Milwaukee and ours in a little town west of Madison, Wisconsin. After our meal, I watched her slowly lumber across the parking lot, in the dark, thinking, “Something is wrong.”
As my mother’s tests returned it was clear she did not have a mass, but that her liver was failing. I ticked through all the reasons I could think of why a liver would fall apart and I knew with a sickening clarity: this was celiac.
My mom was diagnosed with celiac disease in her 50s. The diagnosis evolved slowly as vague symptoms and rashes and appointments with specialists and biopsies finally coalesced into the recommendation that she avoid gluten. I did not know the language of this illness at the time—I attended medical school as an older adult—but I would later learn that the skin condition she developed, dermatitis herpetiformis, is a sign of uncontrolled celiac disease.
A gluten-free lifestyle was a curiosity. I had never heard of celiac disease prior to my mother’s diagnosis. When she came to visit, my husband, a fearless cook, carefully prepared meals, experimenting with polenta and gluten-free flours and scouring ingredients to make sure seasoning packets—such as for enchiladas, her favorite—contained no gluten. Advance planning, including trips to specialty stores—my mother was diagnosed before gluten-free sections were a feature in many grocery stores—became part of the rhythm of our family whenever my mother stayed with us.
Years later, I realized that our meals with her were merely a gluten-free oasis in a diet where she regularly ate wheat. Her attempts to abstain were only half-hearted. She would buy some gluten-free cookies and crackers, but when we sold her condo and moved her to a senior apartment 10 minutes from us, we found the back of her cupboard crammed with expired gluten-free foods that we had picked up for her throughout the years.
My mother had never been forthcoming when it came to discussing celiac disease. I doubt she knew anyone at the time who shared this condition and it became clear at her wake and funeral that she did not routinely discuss this with friends. I’m not sure if she ever picked up a magazine on the subject or bought a cookbook. She never once pointed out a GF icon at the bottom of a menu or asked a server if a meal was safe for her (though we did these things all the time on her behalf). I can only wonder if her doctors asked her about her diet. Even if they did ask and counsel her regularly, I doubt her outcome would have changed.
I accompanied her to appointments with a hepatologist at an academic center in Milwaukee. By this time, she had a liver biopsy and the specialist acknowledged that celiac was the most likely culprit for her liver’s demise. Even then, my mother still cheated on her diet.
In my own practice I have patients with failing lungs who still smoke, who have shattered family relationships, but still drink. When it came to wheat, my mother was an addict. I can’t wrap my head around it any other way to understand how she could continue with the gluten when the outcome was so catastrophic. Except, to be fair, I’m not really sure she ever understood how catastrophic it could be. I took her to many of her appointments with hepatologists, gastroenterologists and primary care doctors, and never once did any of them discuss her timeline. None of my primary care colleagues, many of whom have practiced decades longer than I have, know any patient who has died from gluten. I mean, “Who dies from wheat?”
When I share the story of my mother’s health, I am usually met with incredulous stares: how could she stand the symptoms? People don’t quite believe that she would order breaded chicken strips on her salad or attempt to eat “just the frosting” off a cake at a birthday party without incapacitating results. For her, symptoms were vague and seemingly manageable. Until they weren’t. If “you are what you eat from your head down to your feet,” as I recall the cartoon public service announcement from my childhood, then my mother’s diet was peppered with disdain, indifference and denial.
After her last hospitalization, we moved my mother to a nursing home on hospice. The facility staff carefully shopped and pre-planned her meals, but by this time—she died after nine days—I implored them to let her eat what she wanted. It was a small comfort, all the effort I saw by the culinary staff to keep her safe, but a comfort nonetheless.
I can only hope that the increased awareness of celiac disease—even my town of 2,500 people has a GF section in our tiny supermarket—and the rise in resources and research will help prevent more patients from a trajectory like my mother’s and that I, myself, will never see a patient of my own die from complications due to celiac disease.