Not everyone loves hearing a good medical story, no matter how captivating. That’s why I put it here, so you can ignore it if you’re not interested. But let me tell you something: the symptoms of my gluten intolerance were a little unusual. Had I not discovered the source of the problem when I did, I fear what would have happened next.
I went 34 years without reacting to gluten, but my second pregnancy stirred up trouble. The pregnancy itself, fraught with illness, included multiple hospitalizations and an inability to eat any food at all for about six months. A few days before my daughter’s birth I started having pelvic pain, presumably in preparation for the upcoming delivery. But several months later, the pain persisted. The pain felt dull, sometimes tingling, and with a downward pressure reminiscent of the feeling you get as the baby’s head is crowning. (That reference is for you, ladies.) It felt like this every day, all the time, for about three years.
My search for answers led me to countless physicians, each of whom genuinely tried to figure out what was wrong with me. When they came up empty handed, the go-to resolution always involved throwing drugs at the problem, despite its unknown cause. (This doesn’t work. Depending on the drug you may also get bonus symptoms of weight gain, weight loss, insomnia, restlessness, headaches, dizziness, nausea…) Eventually the pelvic pain grew to include bladder issues, such as pain and numbness. There were times when I literally could not feel myself urinating. I was tested for everything on the planet, and yet somehow the only diagnosis anyone could muster was “stress”.
Finally one savvy doc pieced together the numbness and tingling as peripheral neuropathy and started me on a medication for nerve pain that actually helped a minimal (30%) amount. But no sooner had the first of these nerve-related symptoms been labeled than I started experiencing numbness on the left side of my face and head. It would come and go, sometimes within the same day, but often in spurts of several days or a week. At one point my husband looked at me and said, “You know one side of your face is paralyzed, right?” No, I really didn’t. During this period I would have massive incidences of brain fog, literally having to pull my car over to figure out where I was trying to go. On more than one occasion I got into an accident (involving stationary objects), driving along normally when all of a sudden the confusion and numbness started. Sometimes it traveled down the entire left side of my body, head to toe. (Luckily my kids weren’t in the car with me!) I still had no idea what was happening to my body, but clearly it was moving to the next level.
Spinal taps and MRIs followed, neurologists convinced of something serious like MS or even a stroke, but test results failed to confirm these suspicions. The doctors eventually gave up, but I had no room to do the same. With two young children to care for, I was determined to figure out a way to keep it together no matter what it took.
I decided to see a naturopathic physician simply for acupuncture and vitamin supplements, hoping to stay as healthy as my body would allow. After hearing much of my history (about 20 minutes into our first visit), my doctor declared, “It sounds like a food sensitivity to me.”
What?? Why would anyone think that?! I had no digestive symptoms or even significant allergy issues. Although I was highly skeptical of this theory, I was also willing to entertain any ideas at this point. I started a month-long elimination diet, removing the most allergenic and inflammatory foods—including gluten, dairy, soy, corn, fish, shellfish, peanuts, eggs, sugar, caffeine, alcohol, and more—from my life. (Don’t worry; I’ve become reacquainted with most of these.) A few weeks later, I felt better than I had in years, and was completely symptom free. At the end of the month, I planned to reintroduce the foods one at a time to gauge any adverse reactions. My very first bite of a much-missed bagel produced facial numbness within seconds. I had discovered my body’s aversion to gluten.
It took four years to figure out what caused my ailments, but by eliminating gluten from my world, all of my symptoms disappeared. It was that simple—and that difficult. I admire the compassion of the many doctors who tried to diagnose my problem. They truly viewed it as a puzzle, which, when left unsolved, caused inordinate frustration for everyone (mostly for me). They tried their best. But I do question how not a single Western-trained doctor—and I probably saw members of at least ten different sub-specialties—considered food as a potential source of my illness. Not one.
I am not crazy, a hypochondriac, chronically stressed, or suffering from post-partum depression, nor was I ever; yet these were the prevailing guesses. My body considers gluten toxic and when it’s present in my system it wreaks havoc. Only by trusting my own judgment and what my body was telling me was I able to persevere. Going gluten free not only saved the quality of my life, but possibly my life itself.
The changes to my diet took place in 2007; today, I rarely miss gluten. If I do accidentally ingest some, a leading indicator—the telltale Novocaine-like numbness—cues me in pretty quickly and I can stop. But in the unusual instance that it accumulates in my system (accidents happen; so does Pizzeria Bianco every few years), my body gets it OUT by any means possible. Literally through sweat, tears, brain fog, aggressive behavior, and reverting to the old neurological, pelvic, and bladder symptoms, my body lets me know when I mess up. Luckily I respond well to such threats and choose instead a gluten- and pain-free existence.