How I discovered I had celiac disease and learned to live gluten-free

First, the coughing begins—just a scratchy throat. Then, burning cheeks and redness. Skin, 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 my 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, he 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 local celiac center, 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’m 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 pudding: I’ve been gluten-free for two years—the first two years in a long time I haven’t had frequent unpleasant symptoms. More important, my girlfriend doesn’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.

And when I conveyed this angle over the phone to local gluten-free advocate Danna Korn, I could almost hear her shaking her head: “I hear that every day, and it drives me nuts.”

Fifteen 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 a book. Since then, the 44-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 impending graduation with a degree in poetry—class of 1998.

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 was the reason for my three or four sit-down bathroom visits a day.

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 tested me for parasites, and when the tests came back negative, she said that maybe I had irritable bowel syndrome.

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 over the next seven years.) I didn’t drive two hours in the snow over mountain passes to hear that nothing is wrong with me, I said. I had pain in my lower abdomen like a lead ball in my colon, and runny stools, three or more times a day.

He scheduled a colonoscopy, 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.

He was not fine, she said. A second doctor and then a third—they all told her she was neurotic. Finally, a fourth doctor sent them to Children’s Hospital 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.

Physicians in Europe got hip to the disease years ago, Korn said, and when researchers came to the states for data, they didn’t find any. At first, they thought it might be a rare disease for Americans.

“If you’re not testing for it, you’re not going to find it,” Korn said.

Ask the average gastroenterologist the number of celiac patients they treat, and they’ll say one or two, she 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 R.O.C.K., a celiac kids support group that originally consisted only of her family but later grew into the nation’s largest, with 100 chapters. (More on R.O.C.K. can be found at www.glutenfreedom.net.) Since then, a 2004 consensus report by the National Institutes of Health centralized much of the information about celiac disease.

Dr. Martin Kagnoff is a member of the NIH consensus committee. At the William K. Warren Medical Research Center for Celiac Disease at UCSD, he and a small team of investigators and clinicians study the disease, its symptoms and treatments. 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’s syndrome.

Some of his patients in the clinics—UCSD’s Perlman Ambulatory Care Center and Children’s Hospital—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. In his office, I began to understand that 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. Fifteen 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 the 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 and a lot of life had passed with it. I accepted that maybe some of the pain in my gut trickled down my spinal cord from my 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 problem is that 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. So if celiac is more common than the common cold—which it is—then how many people live with gluten sensitivity?”

To answer this question, Korn pointed me to Dr. Kenneth Fine, who runs a clinical lab called EnteroLab (www.enterolab.com) and heads the nonprofit Intestinal Health Institute in Texas.

Ten years of research at EnteroLab has shown 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 when the immune system breaks gluten down and attacks it. To detect non-celiac gluten sensitivity, Fine developed a $100 fecal test, which he sent me, free of charge, in late February. 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.

I self-consciously relieved myself into a vat that looked like a margarine tub, sealed it in a bio-bag and mailed it back to Dallas.

Two years ago, after my GI told me that 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.

Locally, Prometheus Labs performs five serology tests that look for antibodies resulting from ingested gluten. The lab also performs a genetic test, which does not require gluten in the system but, rather, searches for irreversible genetic conditions. About one-third of Americans have the genetic marker for celiac disease, Tim Schofield of Prometheus said, but the presence of the gene does not confirm the disease. Korn and her husband, for example, both have the genetic marker, but only their son has the disease.

Though Prometheus declined to provide data on the number of celiac tests it performs or the ratio of positive outcomes, Schofield did say that more tests come in every year.

“There is a sea change in the awareness of celiac in the past three to four years,” Schofield said. “More in the past couple years, even.”

Unknown to my doctor, but well before I ever spoke to Schofield, I ordered the Prometheus celiac test kit before

my endoscopy.

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. In other words, while doctors had a tube down my throat to look for problems, I was coherent and responsive but also lobotomized. Therefore, my memory of what happened afterward 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.

“Don’t you remember?” my girlfriend asked.

“What are they?” I might have said.

“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.

“Don’t worry,” the nurse added. “Everything you said is between us.”

I still don’t know what I said in that operating room, or if I’ve given an accurate account from the recovery room, and 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 and then a reduction of the dose 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 report on the representation of truth in The Adventures of Tom Sawyer. 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.

I never sent in the kit from Prometheus because of the cost, then $600, plus the cost of the lab to draw the blood. For my health insurance to cover testing, I would have to demonstrate that the tests, or similar ones, could not be performed by a laboratory in its network.

Though I had sworn not to return to my gastroenterologist, I needed him to move ahead with the kit. 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, I was prepared for his refusal. He opened a big book in front of me and said he would do some research over the weekend and call me. Then, with my final request, he wrote a prescription for a tTG test—one of the five serology tests Prometheus uses to locate gluten antibodies—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,” he said.

Wrong. Schofield, Korn and Kagnoff all said gluten must be in the digestive system for a serology test to be accurate.

Instead of using my gastroenterologist’s lab, I took the ball and ran. He had mentioned allergies, so I went to an allergist, who diagnosed 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. 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. And it doesn’t end there. A list on www.glutenfreeinsd.com says to avoid malt, spelt, durum, semolina, bulgur, cake flour, matzo, matzah, couscous, wheat starch, modified wheat starch, hydrolyzed wheat protein and more.

The nonprofit group also warns 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 all 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 awhile, 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 on the translucence of my skin. 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. When people stop eating gluten, he said, they tend to load up on carbohydrates and may not set a nutritionally adequate diet. Kagnoff suggested that many people benefit from a nutritionist consult—so he 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.

If I ate right—in other words, filled up on the nutrients—the corn and dairy allergies might fizzle or go away altogether.

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, 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. If I have it, he said, I should go back on gluten and get a biopsy, but the amount of time it may take for the effects to show again is indeterminate.
It may be next week; it may be in six months.

In San Diego, awareness about Celiac disease is growing.

The website www.glutenfreeinsd.com is the first stop. Gluten Free in San Diego publishes a member-provided list of local gluten-free restaurants, as well as information on gluten-free drugs and support groups like Korn’s R.O.C.K., which holds regular meetings.

Whole Foods has many gluten-free products, often hosts gluten-free days and its nutrition kiosk prints a list of foods and ingredients to avoid.

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 is the treatment for celiac is a gluten-free diet, which is best for you anyway,” 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.”

© 2007 Southland Publishing, All Rights Reserved