The fire down below: How I discovered celiac disease and came to live gluten freeWritten by Administrator | | firstname.lastname@example.org
By Matthew Irwin
Special to Toledo Free Press
First, the coughing begins — just a scratchy throat, so I try to ignore it. Then, my cheeks burn and redden. Skin gets tight and dry. Chest, blotchy. Breathing gets difficult. And, finally, panic.
For anyone suffering from severe allergies, the symptoms of anaphylaxis should be familiar. But having experienced it for the first time at 29 years old, I had a few urgent questions, such as: How did I have an allergic reaction while on medication that should have prevented it?
The prescription for Prednisone was my gastroenterologist’s latest attempt to treat regular diarrhea and stomach cramps that felt like golf balls moving through my intestines. Instead, I spent two weeks cracked out and suddenly empathetic to menopausal women, not to mention angry that, again, my doctor had ignored my request for a blood test to rule out celiac disease, a poorly understood, yet common, intestinal autoimmune disorder.
Celiac disease, also called celiac sprue, is a genetic condition that causes damage to the small intestines after its sufferer consumes gluten, a protein in common grains. According to a celiac center in Southern California, the disease often reveals itself through irritability (one of my lifelong traits), weight loss (check), “diarrhea with greasy stools” (check), and “abdominal cramping and discomfort” (check and check).
Though opinions vary, most experts agree that up to 1 percent of Americans have celiac, less than 4 percent of those people know about it, and the average delay in diagnosis is 11 years. And these numbers don’t include Americans affected by other forms of gluten sensitivity, which some experts believe is much higher.
Having suffered for only seven years, I fall below the national average, but I’m still unofficial because I diagnosed myself, which at least one expert discourages. But the proof is in the result: I’ve been gluten-free for four years — the first four years in a long time I haven’t had frequent unpleasant symptoms. More important, my friends don’t think I’m as much a cranky grouch as I used to be.
This is my story — one person’s struggle to understand why eating hurt, why his moods were unpredictable and why diagnosis was so difficult. I’ve had colonoscopy, small-intestine X-rays, an MRI and an endoscopy, the latter requiring a drug that encouraged me to reveal all my nasty transgressions and infidelities. (I apologize in advance for all the poop talk.)
Lack of information
When I conveyed my angle over the phone to gluten-free advocate Danna Korn in San Diego, I could almost hear her shaking her head: “I hear that every day, and it drives me nuts.”
Nineteen years ago, after being told repeatedly by doctors that nothing was wrong, Korn’s young son Tyler was diagnosed with celiac disease. Upset by a lack of information, she educated herself and wrote two books, “Wheat-Free, Worry-Free: The Art of Happy, Healthy, Gluten-Free Living,” and “Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy Gluten-Free Children.” Since then, the 47-year-old professional recruiter has written several books, including “Living Gluten-Free For Dummies.” She started a nonprofit for kids with celiac and has become an advocate for gluten-free lifestyles.
My symptoms probably began in college, most noticeably senior year, when I’d hurry out of parties and classrooms for the bathroom. But I shrugged it off: I’d been dealing with a failing relationship and anxiety over my impending graduation from Miami University with a degree in poetry, class of 1998.
I didn’t know what I was going to do with myself next, so I returned to my parents’ house in Toledo to decide. A family doctor diagnosed me with separation anxiety and offered a prescription for Prozac, but I refused, deciding instead to deal with it on my own, which, of course, meant that I drank a lot — so I figured excess caused my frequent bathroom visits.
I moved to Wyoming and spent the next two years snowboarding, hiking and climbing in Jackson Hole. Life was good, but my digestion sucked. An internist there tested me for parasites, and when the tests came back negative, she said that maybe I had irritable bowel syndrome (IBS).
For another year, I coped, occasionally eliminating foods from my diet: Milk went first, then eggs. Still, the symptoms continued. I returned to the internist, who again tested me for parasites, and again suggested IBS, so I requested a specialist referral.
A gastroenterologist in Idaho Falls said I was too young to have anything real — it was all in my head. (This diagnosis would become familiar during the next seven years.) He scheduled a colonoscopy, nonetheless, which found nothing. I walked away with the unpleasant memory of him inserting the scope before the anesthesia kicked in.
For Korn’s son, the diagnosis was much faster, but much more frightening. One-year-old Tyler got sick, and the family doctor told her he was fine. A second doctor and then a third — they all told her she was neurotic. Finally, a fourth doctor sent him for “a bunch of tests.” They thought he had cystic fibrosis. They thought he had cancer. They didn’t know what he had, but they knew it was something. Finally, they tested him for celiac.
Ask the average gastroenterologist (GI) the number of celiac patients they treat, and they’ll say one or two, Korn said. Then ask the same GI how many patients they’ve tested for celiac and the response will be the same: one or two.
When Korn began her research, information was scarce. She scoured medical libraries and talked to experts with one goal in mind: “I wanted Tyler to have a birthday party when he didn’t have to ask, ‘Can I eat this’?”
She founded Raising Our Celiac Kids, or ROCK, a celiac kids support group that originally consisted only of her family but later grew into the nation’s largest, with 100 chapters. Since then, a 2004 consensus report by the National Institutes of Health (NIH) centralized much of the information about celiac disease.
A clear diagnosis
Dr. Martin Kagnoff is a member of the NIH consensus committee. At the William K. Warren Medical Research Center for Celiac Disease at University of California, San Diego, he and a small team of investigators and clinicians study the disease. He said educating physicians and other clinicians about celiac disease and its various “atypical and silent presentations” should be a priority. This means doctors should not only be looking for chronic intestinal pain, but also for patients with relatives who suffer from celiac, as well as patients with iron-deficiency anemia, premature osteoporosis, vitamin deficiencies, delayed growth in children, abnormal liver function or Down syndrome.
Some of his patients in the clinics have complications with neurological disorders, IBS and other autoimmune diseases, such as diabetes, thyroid disease and autoimmune hepatitis.
Many of the people Kagnoff sees are like me — undiagnosed, but have stopped eating gluten and feel better. Kagnoff does not recommend going gluten-free without a clear diagnosis, as self-diagnosis may not be accurate and can make later evaluation much more difficult.
When I moved to San Diego in 2003, I’d been looking for an answer for only about five years and I still hadn’t heard the words “celiac” or “gluten,” but my symptoms worsened, and I couldn’t eat without becoming distended and angry. Uninsured at that time, however, I put off the search.
Not until I started a new job with a good health plan did I resume the diagnostic process a year later. A new primary physician ran me through the parasite tests, again, and when the laboratory reported negative, again, he sent me to a gastroenterologist, who prescribed an MRI.
When I complained at work about the process, a coworker asked if I had been tested for celiac. Nineteen years ago, when she gave birth to her daughter, she suddenly and inexplicably lost weight and couldn’t move her bowels without diarrhea. My symptoms sounded familiar, she said, especially lack of diagnosis.
Turns out, celiac remains dormant in many people until triggered by a traumatic event, like pregnancy, Korn said. Other triggers include surgery, a car accident and emotional distress, such as a divorce or, probably in my case, anxiety.
This information came in August 2005, and I was 29 years old. Seven years had passed since I began looking for answers. I accepted that maybe some of the pain in my gut trickled down my spinal cord from obsessive worrying about money, family, career — and though I found a sustainable job, started grad school, met a girl and believed that life was all-around pretty sweet, eating got worse. Every time I ate, illness and mood swings followed.
For someone with celiac, gluten causes nutrient-absorbing intestinal villi to flatten. Kagnoff compared it to shaving the shag off a shag carpet. The small intestines can’t absorb nutrients.
Those of us fortunate to have the digestive symptoms may discover the disease sooner, but many sufferers live with other conditions. For this reason, Korn wants everyone to test for celiac disease and gluten sensitivity.
“The common misconception is that the symptoms are always [intestinal],” Korn said. “But most symptoms are headaches, fatigue, joint pain, depression, even infertility.”
But here’s where her work differs from Kagnoff’s: “No one can fully digest wheat,” she said. “And gluten sensitivity is much more common than celiac.”
Korn pointed me to Dr. Kenneth Fine, who runs a clinical lab, called EnteroLab, and heads the nonprofit Intestinal Health Institute in Texas.
Ten years of research at EnteroLab showed Fine that about 30 percent of healthy people and 50 to 70 percent of sick people have some form of gluten sensitivity, but not necessarily celiac disease.
Fine said that non-celiac gluten sensitivities can affect any part of the body. To detect non-celiac gluten sensitivity, Fine developed a $100 fecal test, which he sent to me, free of charge, in late February 2007. A nurse in his office told me that the test — which Korn says is controversial — works by searching for gluten antibodies in the small intestines that absorb into the fecal matter.
So, I self-consciously relieved myself into a margarine-like tub, sealed it in a bio-bag and mailed it back to Dallas.
Six years ago, after my GI told me the MRI showed nothing, I asked him for two blood tests to rule out celiac. But he suggested an endoscopy first. During the procedure, he said, he would take a biopsy for the lab and I agreed.
The NIH and Kagnoff still consider biopsy of the intestines the “gold standard” for a definitive diagnosis of celiac disease, but the NIH report also said that the first step to a diagnosis is a serologic (or antibody) test.
The nurse said the endoscopy went well. For the procedure, the doctor needed to move me around easily, according to the patient release form. As such, I was given an anesthesia that basically deadened my short-term memory but kept me awake. While doctors had a tube down my throat, I was coherent and responsive but also lobotomized. My memory isn’t clear, but I think it went like this: I woke up in the recovery room holding photographs and had asked for my girlfriend. I may have been alone, and it could have been seconds, or it could have been an hour, when she finally walked in.
“What am I doing with these photos?” I wanted to know.
“They’re of your esophagus,” the nurse said. “You asked for them during the procedure. The doctor showed you the screen and you asked for copies. Don’t worry, the drugs will wear off.”
“And don’t worry,” the nurse added. “Everything you said is between us.”
I still don’t know what I said in that operating room. In his office, my gastroenterologist said he didn’t remember or wasn’t paying attention. “I have to admit, though” he said, “that I didn’t test you for celiac, but I do think I found the trouble. You have eosinophilic esophagitis.”
He wrote it down on a prescription pad, and explained that some kind of allergy or autoimmune disease that caused swelling in my esophagus probably also affected my intestines.
Whereas allergies cause a hypersensitive immune system to attack allergens like it would attack a cold virus, Korn said, autoimmune diseases antagonize the immune system to attack tissue when a “foreign invader,” such as gluten, comes around. An autoimmune disease, such as celiac, causes the body to attack itself.
“Could esopho-whatever come from celiac?” I asked my GI.
His annoyance showed. I had done my own research, and he didn’t appreciate it. His expensive education won out against my Internet research.
“It’s possible,” he said, “but I’d like to try steroids first and see what happens.”
I accepted — two 10-milligram pills of Prednisone by mouth for a week, then a reduction by half a pill each week until finished. Having begun the graduate creative writing program at San Diego State University that year, I had due a 20-page research report. Though I took an extra day off work and closed my social calendar for the weekend to write, I spent the time impatient, jittery and unfocused — basically, cracked-out from the pills.
A week later, while eating Mexican food and drinking margaritas with a friend, I started coughing, and my throat got scratchy. My cheeks burned and turned red. My skin got tight and dry, my chest blotchy, my breathing constricted, and my heartbeat increased. I panicked and called my girlfriend to pick me up. She dosed me with Benadryl and covered my body in cold wet towels. I counted the ticks of my heart against the ticks from the ceiling fan until I finally fell asleep.
With my gastroenterologist out of town, I spoke to his baffled colleague, who said steroids should have prevented that reaction, but since they didn’t, I should quit taking them.
Though I had sworn not to return to my gastroenterologist, I needed him to move ahead with testing. Attempts to switch doctors failed when my HMO referred me over and again to specialists in the same office. So, as I stood in my GI’s office, again requesting a celiac test. He finally wrote a prescription for a tTG test — one of several serology tests — in his office’s lab.
“I haven’t eaten gluten in a couple weeks,” I said. “Do I need it in my system for the test to work?”
“No,” the GI said.
Wrong. Korn and Kagnoff, and all available information shows that gluten must be in the digestive system for a serology test to be accurate.
Instead of using my gastroenterologist’s lab, I went another way. I went to an allergist, who diagnosed me with allergies to dairy, eggs and corn. Corn, in corn starch, corn syrup, high fructose corn syrup — as in margarita mix, as in what I had been drinking with corn tortilla chips when I first experienced anaphylaxis.
Margaritas and tortilla chips have been two regular parts of my diet since before I could drink legally, and I’ve never reacted to either prior to the steroids. But I’m not a doctor, so what do I know? It was probably a coincidence.
The allergist gave me two choices: avoid allergens or begin immunotherapy, which involves one $15 shot every week until the symptoms go away, which could be years or never. I chose avoidance.
And what about celiac and gluten sensitivity? Not his specialty, he said, but if avoiding gluten makes me feel better, stay away from it, too.
Most people I know don’t understand what gluten-free means. It means no gluten. None. No wheat, barely or rye. No bread. No pasta. No pizza, subs or beer. The list of foods to avoid also includes malt, spelt, durum, semolina, bulgur, cake flour, matzo, matzah, couscous, wheat starch, modified wheat starch, hydrolyzed wheat protein and more.
Celiac support groups also warn against “natural flavorings,” dextrin, seasonings, processed cheese, flavored yogurts, alcoholic beverages (fortunately this doesn’t include wine) and soy sauce.
I haven’t even touched on cross-contamination during food processing or preparation (an issue at restaurants) or the many pharmaceutical drugs that use gluten as a binder. I also have the additional displeasure of avoiding corn and its derivatives that exist in many gluten-free foods.
Which brings me to the favorite question of friends and coworkers who do not understand or experience problems with food: What the hell do you eat?
For a while, I ate nothing — maybe one meal a day because I didn’t want to get sick. I lost weight, so much that a concerned professor remarked that my skin had turned translucent. But a clinical nutritionist taught me how to eat all over again.
Allergies and autoimmune diseases can be aggravated by poor nutrition, which is why Kagnoff frowns on self-diagnosis and keeps a nutritionist on staff.
My nutritionist suggested yams and sweet potatoes for breakfast, rice for dinner with fresh meats and vegetables, especially spinach for the iron, and maybe a daily supplement. Throughout the day, she said, I should eat handfuls of nuts and I should think about taking pro-biotics (digestive bacteria) to replace what I’d lost from diarrhea. At restaurants, she said — better yet, avoid restaurants.
Yes, finding food to eat is frustrating. The pain and tests and unanswered questions have been frustrating since 1998. But having some idea, as unofficial as it is, feels good.
Then, on March 13, 2007 came the results of the controversial fecal test I did with Fine at EnteroLab: “Antibody was elevated, indicating that you have active dietary gluten sensitivity,” the e-mail said. It recommended a “strict and permanent” gluten-free diet.
Kagnoff refused to comment on the fecal test or the results and suggested, nonetheless, that I get a genetic test to look for the celiac marker.
It’s been 10 years since I began trying to understand my digestive trouble, and four years since I’ve been (mostly) gluten free. I occasionally slip up when eating out, and I always pay for it. Sometimes with an immediate visit to the restroom, other times with a fever and some kind of cold.
Overall though, my life has improved dramatically. I returned to Jackson Hole in late 2008 to discover a number of restaurants had gone gluten-free, from Thai food to American bistro, and a new grocery had opened dedicated to organic and allergen-free foods, basically a locally owned Whole Foods. I experimented with my ancillary food allergies and discovered that not only has cheese ceased to be a problem, but that I’m also able to enjoy larger quantities of eggs, which before bothered me even in small doses, in cakes for example. I haven’t tried corn, yet, though, because the borderline anaphylaxis is just plain frightening.
Help in Toledo
Awareness about celiac disease is growing. The website www.celiac.com is the first stop. In Toledo, begin with Gluten Free Support of Toledo (www.glutenfreesupportoftoledo.com) or Organic Bliss Deli and Bakery on 3723 King Road in Sylvania, which ships its gluten-free bread products all across the country.
I spoke with the head baker at Organic Bliss, Christy Krabach, on the phone, who told me that she too found her way into gluten-free foods by way of personal experience. Just before her son turned 5 years old, doctors diagnosed him with autism. After visiting doctors all across Ohio and Michigan and trying traditional treatments, Krabach began doing her own research and discovered the food sensitivities tend to exasperate autism.
In addition to gluten products, she keeps him off yeast, corn and rice, among other things. The whole process took about eight years, Krabach said, and she spent much of that time educating herself on how to cook for her son. After she started at the bakery as an assistant two years ago, she was a natural fit when the former head baker left.
“With a list [of food sensitivities] like [my son’s], there has not been anybody I haven’t been able to help,” Krabach said. “When people come in with a list of allergies, I say, ‘Is that all?’”
In the past four years, Krabach has noticed a vast improvement in the availability of gluten-free foods at traditional grocers, such as Kroger, though products differ from location to location. She also shops at and Claudia’s Natural Food Market (3343 Secor Ave). And once in a while, she’ll travel to Whole Foods in Ann Arbor.
In addition to the food at Organic Bliss, Krabach suggests the gluten-free options at Red Robin, Biaggi’s, Carrabba’s, PF Chang’s, Outback Steakhouse and Gino’s Pizza. Charlie’s Pizza and Edibles on Sylvania Avenue uses Krabach’s pizza crusts, at least a dozen every week.
Hypersensitive eaters, she said, should stay wary: “There are the risks anybody takes going out to eat,” Krabach said. “I know two people who will seizure if they have even a hint of gluten. They can’t risk going out. Most people, however, if they take the proper precautions, can comfortably go out.”
Korn’s “Living Gluten-Free For Dummies” is an encyclopedia of celiac disease and gluten sensitivity, written clearly enough for anyone to arm himself against his doctor, however educated his doctor may be.
“The coolest thing in the treatment for celiac is a gluten-free diet,” Korn said.
Before you stop eating gluten, get tested and be persistent with your doctor. Don’t wing it, as I have. Living without a diagnosis is an excuse to slip, an excuse that always ends with me going home early and spending the night on the toilet. But the opposite — waiting — could be worse.
“For celiacs, feeding them gluten is like feeding them rat poison,” Korn said. “You could be setting yourself up for other, worse, conditions.”
Matthew Irwin is editor of the alt-weekly JH Weekly in Jackson Hole, Wyo., and editor-in-chief of the biannual literary journal Jackson Hole Review. He grew up in Toledo and attended St. John’s Jesuit (Class of 1994).