For a Celiac Sufferer, a New Mystery Illness - Well Blog
Jonathan Papernick
Patient Journal
Patients Tell Their Stories
Firsthand accounts of living with illness or disability.
The problems began not long after I moved in with my future wife. I was losing weight at an alarming rate, drifting for hours after meals in a confused fog. My acid reflux was so bad I felt like I had a golf ball lodged in my throat. I suffered from otherworldly constipation and had no sex drive. My tongue swelled like a wet sponge. It seemed everything I ate contributed to my misery.
These symptoms weren’t the ones familiar to me from my mid-20s, when I’d learned I had celiac disease. People with celiac can’t tolerate gluten, a protein in wheat found in many foods and everyday products. When I ate gluten, my sides ached and my small intestines felt as if they had been rubbed raw by sandpaper; I felt tremors throughout my body and deep, deep exhaustion. My mother lived with celiac disease for most of her life, and after overcoming years of willful ignorance of my mother’s condition, my health finally improved when I began avoiding wheat and other gluten-containing grains.
Now even gluten-free foods caused my throat to tickle and my head to throb, and I had no idea why. I had painful canker sores all the time. I couldn’t understand how I could have solved one mystery by removing gluten from my diet, only to be baffled by another, more frightening, condition.
My future wife was afraid I was dying and wondered seriously whether I was somehow allergic to her. By the time we were married a year later, several allergists had told me that I had no allergies at all. Gastrointestinal doctors blamed my mysterious affliction on stress. An acupuncturist said my chi was out of whack. I was tested for parasites and came up clean. More than a few friends and family members suggested indelicately that my problems were all in my head, or worse still, that I was simply seeking attention. I couldn’t even look at the skeleton resembling myself in the mirror anymore.
Illness can do strange things to an ordinarily rational mind, and I was desperate to find a solution. A friend told me about a new-age treatment that claimed to resolve undiagnosed health problems. After shelling out several hundred dollars for a consultation, I was informed that my problems were caused by “energy blockages,” disruptions in the normal flow of energy through my body’s electrical circuits. The practitioner said she could permanently cure me simply by treating my pressure points while I held in my hand a vial of charged water containing the same properties as the allergen. Apparently, a minimum of 30 to 40 treatments would be necessary to help me gain back chicken, potatoes, rice, beans and other staples that I had relied on my entire life. For more than six months I paid good money for treatments that did nothing to help me, the practitioner always promising that next time I was due for a breakthrough that would allow me to once again eat my favorite foods. I should have been more skeptical of this miracle cure. But with more and more foods finding their way onto my blacklist, I could not afford cynicism. I needed a miracle and nothing less.
My wife had had enough of my indulgence in expensive, unproven “voodoo” medicine, and she put out a frantic call to her friends and colleagues asking for help. A friend passed along the name of a doctor known to have success with people thought of as incurable — the last resort for many seemingly hopeless cases.
Within minutes of meeting the doctor and explaining my symptoms, he was certain that he had pinpointed the source of all my problems. Yeast.
He took a blood test just to be sure, and as predicted, my yeast levels were off the charts. He explained how Candida albicans, an aggressive sugar-eating yeast that had been colonizing my intestines, is a common concern for celiacs, whose tiny, hair-like villi in their intestines have been flattened and damaged by gluten.
Under normal circumstances, the majority of the human population lives with Candida albicans in their digestive systems without any problems. But I listened with horror as he explained how the roots of the Candida were starting to break through the walls of my intestinal tract, causing a leaky gut through which microscopic bits of food were entering my bloodstream.
I was ordered to cut out all sugar, alcohol, fruit, starch, peanuts and mushrooms and told to eat protein and vegetables with low sugar content. I was allowed kale and collard greens, but carrots and red peppers were off the list. I was taking no less than 12 different supplements, including probiotics and digestive enzymes, to heal my system. My compromised digestive system couldn’t even handle ordinary calcium supplements, and my wife and I sat at our coffee table filling gelatin capsules with white calcium powder. (You can imagine what it looked like to an unknowing visitor.)
The doctor prescribed an antifungal that would work slowly to kill off the unwelcome aggressor. Every time I took the medication, even at the lowest possible dose, I felt like I’d been struck down by the flu as the invading yeasts died off — evidence of how serious my problem was. It would take a long time to reverse the damage that the Candida had done, but I was finally on the right track.
When I didn’t improve as quickly as my doctor expected, he sent a mold remediation specialist out to our apartment to check out our living situation. There was black mold in our closets and on our walls, and the air shaft that was supposed to provide fresh air to three of our rooms was full of pigeon feces and filth. I was shocked to learn that our New York City apartment was slowly killing me.
My doctor explained that others could live perfectly normal lives with this mold, but in my case, with a compromised immune system, the toxic mold was simply piling on a heavily taxed system and adding fuel to the Candida — the literal last straw. We were ordered to clean our walls with hydrogen peroxide and to purchase an industrial-strength air filter with an infrared beam to get rid of the mold. The hydrogen peroxide had little effect, as the tenacious mold seemed to reappear within days.
I slowly reintroduced foods back into my diet, starting with a simple forkful at a time. However, with every slice of potato, mouthful of rice, nibble of chicken, I felt my head throb, my throat tickle. My doctor suggested that we move, and before long, a job opened up in Boston. I packed up and left town — four months ahead of my wife, who still needed to wrap up things with her job.
Within weeks of living in New England, I started to improve, slowly, ever so slowly, and I found the courage to reintroduce foods back into my diet. It took years, not months, as I followed the doctor’s strict diet, which included egg whites and spinach and tuna for breakfast. Eventually, gradually, thankfully I got better.
I have since gained the weight back (and then some) and have started a family. With the increased availability of allergen-free medicines and supplements, and my own hard-learned lessons, I am now able to enjoy life all over again. But I can’t help but wonder how many people with celiac disease have suffered unnecessarily because so many doctors are not prepared to deal effectively with the condition.
Jonathan Papernick is the author of three books, including the new short story collection, “There Is No Other.”
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