Since high school, 38-year-old Oakland resident Laura Linden experienced chronic, mysterious stomach pain. It became gradually worse over the years. A couple of times, while the doe-eyed blond was an undergrad at UC Davis, the pain got so bad that she took herself to the emergency room. Once, she overheard a health worker remark that she probably had an eating disorder.
Nothing was further from the truth. Although Linden ate a lot, she could never accumulate much more than 110 pounds on her five-foot-four-inch frame. She figured the cause of her malaise was in her blood. As a kid, she’d watched her mom pop Rolaids like candy. “I used to think to myself, ‘Yeah, if you cut up my mom’s veins there’s probably chalk inside,” she joked recently over a bowl of taco salad at a Berkeley raw-foods restaurant.
Things got worse for the former journalist about ten years ago. She was exhausted all the time, and had frequent allergy attacks, colds, and sinus infections. Doctors viewed her symptoms in isolation. Sour stomach? Cut out orange juice and coffee. Sinus infection? Here are more antibiotics. But her constant sickness took its toll.
“I kind of knew something was wrong with me,” Linden recalled thinking. “But at the same time, I also kind of bought this idea that maybe it was just me, maybe this was how it was supposed to be, or maybe I’m a stress case or something like that.”
Her health deteriorated further a few years ago, as she attended grad school at the University of Arizona. Finally, Linden went to a campus doctor complaining of fatigue and a bad cold. After a series of tests, the results were clear: Linden had celiac disease, an autoimmune disorder that prevents the body from processing gluten, a protein found in wheat, barley, and rye. She had never heard of it before.
The doctor’s prescription: a gluten-free diet for life.
That might have seemed daunting, but Linden was overjoyed. “I just cried!” she said. “I couldn’t believe it ’cause I didn’t really think that there was a thing that I was going to stumble across that was going to make me better.”
As her gastroenterologist probed into her past, he found more than a few indications of the disease, such as the wart-like growths she would get in the corners of her mouth in junior high — a sign of malnutrition. But up until that point, doctors never thought to screen her for celiac. “It’s not like I had cancer or I was bleeding to death, so there’s nothing very obvious,” Linden rationalized.
These days, she hardly resembles the sickly girl she describes. She still has some digestive problems, but her weight is back up — “probably more than I want it to be,” she said — along with her energy. She even works out at the gym these days.
Linden never suspected something as seemingly innocuous as bread could make her sick. Yet foods containing wheat, rye, or barley prompted her body to attack itself. Her own antibodies would inflame and damage the tiny, finger-like villi in her small intestine. The absence of these nutrient-absorbing structures explained why Linden was malnourished and often doubled over in pain.
She was one of the lucky few to be diagnosed. Researchers believe millions like her still suffer needlessly.
Chances are you know someone who has celiac, but even better that they don’t know it. Although the numbers vary, researchers estimate that celiac affects about 1 in 133 Americans, and that a staggering 97 percent are undiagnosed. A large-scale study in 2003 estimated there were about fifteen thousand diagnosed celiac patients. This year, that number is expected to exceed one hundred thousand, said Michelle Pietzak, a pediatric gastroenterologist, assistant professor of clinical pediatrics at USC’s Keck School of Medicine, and one of the authors of the 2003 study.
For each person diagnosed with celiac, another 140 will seek medical attention for twelve years before receiving a diagnosis, Pietzak said.
The disease has only recently gained attention in the United States. Last November, CNN anchor Heidi Collins became a spokeswoman for the National Foundation for Celiac Awareness. Articles in The New York Times, Newsweek, and Time have helped raise its profile. And in 2004, the National Institutes of Health convened its first meeting on celiac. Yet there still hasn’t been much of an increase in diagnoses, said Elaine Monarch, founder and executive director of the nonprofit Celiac Disease Foundation.
The condition goes undiagnosed for a number of reasons. For one, most medical texts touch on it only briefly, and even then it’s described as a rare childhood disorder. This perception became a self-fulfilling prophecy, the Wall Street Journal revealed in 2005, because doctors tended not to test for celiac. And because the condition is related to malnutrition, doctors erroneously ruled out patients who were overweight or obese.
It also can be a tricky diagnosis, since symptoms vary, and some people don’t have any. Among the most common, according to the Celiac Disease Foundation, are a distended stomach, cramps, excessive gas, bloating, chronic diarrhea, constipation, anemia, fatty stools, and weight loss. Celiacs can also be depressed, irritable, lacking in energy, infertile, have dental enamel defects, and develop osteoporosis, joint pain, ulcers, or a blistering, itchy skin rash called dermatitis herpetiformis.
Actually getting a diagnosis is fairly straightforward. A blood test taken when the patient is on a gluten-containing diet checks for the presence of antibodies. The disease is confirmed by an intestinal biopsy that demonstrates damage to the villi.
As far as researchers know, celiac has been around since humans switched from a foraging diet of meat and nuts to a cultivated diet that included grains. Back in the second century, a Greek physician named Aretaeus first dubbed it koiliakos, which meant “suffering in the bowels.” Eventually, it became coeliac or “celiac.”
While the cause is not well understood, researchers know it is linked to gene variations known as HLA-DQ2 and/or HLA-DQ8. Immediate family members of celiac patients have a 10 percent chance of having it, too, said Douglas Corley, a gastroenterologist and researcher at Kaiser Permanente in San Francisco.
The disease is believed more common among people with disorders such as Addison’s disease, Down syndrome, fibromyalgia, lupus, and autism. Even so, only a small percentage of these patients are co-diagnosed as celiac.
It also appears to be more common among people of European descent, Corley said, but that’s where it has been looked for most aggressively. Celiac is often activated by traumatic events such as surgery, pregnancy, childbirth, viral infection, or severe emotional stress.
It’s not clear whether ingesting gluten causes a person to develop celiac or simply triggers symptoms of the disease. But even the gluten connection wasn’t known until 1950, when Dutch pediatrician Willem Dicke noted that British children suffering from chronic diarrhea had thrived during the grain shortages of World War II.
Not much has changed. Eliminating gluten from the diet was then, and still is, the only way to alleviate symptoms and reverse the intestinal damage.
If only it were that easy.
Gluten is everywhere. It’s the mother of all fillers, lurking where you’d least expect: soups, salad dressings, soy sauce, marinades, candy, soy milk, beer, energy bars, processed lunch meats, imitation seafood, frozen dinners, prescription drugs, vitamins — not to mention nearly every starchy carbohydrate filling the aisles of your local Safeway. If they’re not made with gluten, there’s a good chance they were processed in the same facility, and thus are tainted with the offending protein. Avoiding it completely is next to impossible — especially when eating out.
Not that people aren’t trying. On a Friday evening in July, Naren Wadhwani, 31, steps up to the counter at Cactus Taqueria. The popular Rockridge restaurant brims with the chatter and clatter of its usual customers — parents towing screaming kids, commuters fresh off BART. But this is Wadhwani’s first time there, and he’s a bit cautious.
He asks the counter person if the corn chips are fried in the same oil as any breaded products such as empanadas. He needs to know because even ingesting crumbs — which celiacs call being “glutenized” — can make him tired and give him stomach pain for days.
He deems them safe, then orders two carnitas tacos. From prior experience, he knows they’re made exclusively with corn tortillas, which the server tells him are grilled, and not placed in the same steamer as the gluten-y flour tortillas used for burritos.
The bespectacled Wadhwani sits down at a table with four gluten-free women he’s never met, including this reporter. All are noticeably thin. “Usually, I don’t eat chips,” he announces, his black T-shirt hanging on his lean, five-foot-eight-inch body.
“Whenever they come mass in a bag, I eat them,” offers Laura Linden, who is seated next to him. If they’re fried in a large batch, she figures, there’s probably a dedicated fryer.
Although these chips aren’t fried in anything else, Wadhwani says, “there’s always that possibility of miscommunication.”
“They’ll tell you what you want to hear,” Linden laments.
“Typically, I’ll ask about spices — is it a mix or pre-made?” he says. “Some places in the Mission have MSG that can have gluten in it. Also, I’m allergic to food coloring. I have to be at the highest level of awareness.”
“That sucks. That’s a lot,” says Patti Furey-Crane, owner of the gluten-free Mariposa Bakery, who is sitting across the table (See “Opportunity Gurgles,” page 11).
“It could be worse,” Wadhwani shrugs.
“It doesn’t always feel that way, though,” chimes redheaded Mary Fiala, a 47-year-old Oakland resident with a slight Arkansas drawl.
Discussing your disease with a group of strangers is standard fare for members of the SF Bay Area Celiac Disease Dinner Group, a Yahoo group Linden launched last fall after hearing about something similar in New York. “It’s not like we have cancer or something like that,” she later surmised. “But there are just all these peculiar things that a lot of us deal with.” When they get together, the diners typically exchange information about what grocery stores or restaurants carry what gluten-free items. They also find camaraderie in shared symptoms. “You just kind of go, ‘Did that happen to you? Because it seemed so mysterious at the time,'” she said.
Although awareness of celiac is increasing, patients still deal with the difficult reality of maintaining a gluten-free lifestyle. “It’s two separate reactions,” said Ellen Switkes, who was diagnosed more than twenty years ago and runs a celiac support group in Oakland. “They don’t know how they’re going to live; ‘this is terrible,'” or “‘I’m not dying.'”
The biggest concern, Switkes said, is how to eat outside of the controlled home environment: dinner parties, restaurants, and abroad. Even if you can avoid foods containing gluten, shared kitchen equipment is often contaminated. What’s more, otherwise safe foods processed in the same facilities as wheat, rye, and barley can create problems for the gluten-free. Culling such information from waiters who tend to know little about actual ingredients can be daunting.
Even the celiac community is split over which foods are safe. “As a result we have several national support groups instead of one,” Switkes said. “The attempts at providing a unified voice in the US have taken place, but it’s still not good enough. It’s a real problem.”
Part of the problem lies in the fact that gluten isn’t regulated. The federal Food and Drug Administration requires food companies to disclose eight allergens, including wheat, but not gluten. Officials, however, are working to determine how much gluten celiacs can safely ingest. With luck, labeling could start at the end of next year.
Some celiacs play it safe by never eating outside the home. Switkes thinks that’s too restrictive. “You need to lead a normal life and figure out some ways to make this work for you,” she said.
Linden hopes her dinner group will help make life easier for local celiacs. So far, the group — which has 44 members — has tried out four Bay Area restaurants. Although none caters specifically to celiacs, she hopes the group’s presence will encourage restaurateurs to be more accommodating.
Until then, celiacs will have to fend for themselves and stomach society’s misunderstandings. “People say you’re too skinny. That’s just as bad as saying you’re too fat,” Fiala laments back at the taqueria. She says she’s been eating a lot of butter and ice cream, and has gained a few pounds. “It probably won’t stay on, but it’s still kinda fun. Look! I’ve got some body fat,” she says, pinching a tiny roll on her tummy.
Linden says she took a fecal fat test at the Stanford Celiac Clinic last summer to gauge how much fat she was absorbing. She’d read a study saying celiacs don’t absorb nutrients properly even after years of avoiding gluten. “My brother has been extremely, extremely sick, even though he’s on a gluten-free diet,” Fiala says. His wife, she explains, doesn’t always tell him in time whether something she has cooked is safe. Fiala also thinks his stepsons might be deliberately tormenting him by using the same pans and toaster on gluten-containing products.
“Ohhh, that’s just cruel!” Furey-Crane says. “That’s why his body isn’t healing.”
“Well, that’s what I think,” says Fiala.
“I was sick for a whole year after I was diagnosed,” Linden says.
“I think it takes a long time to heal,” Fiala agrees.
The table discusses why many people with digestive problems are resistant to going gluten-free. “It was a huge emotional hurdle,” Fiala admits. At first, she says, she’d have reoccurring nightmares about slipping up. “I dreamed about [eating] a scone,” she said. “Then I’d get all upset. … Oh my God! I’m going to die!”
Contributing to the lack of understanding about celiac’s prevalence is that many people with symptoms never get tested, while others are self-diagnosed by debatable methods. Their decisions could have serious consequences.
Mary Fiala was in her thirties when she began having digestive problems — swelling, gas, diarrhea, and extreme pain in her gut. Her doctor gave her a pregnancy test, and upper and lower gastrointestinal tests, but all came back negative or inconclusive. “They shrugged their shoulders and said … you just have spastic colon,” she said. In other words, Irritable Bowel Syndrome.
Doctors suggested she learn to manage her stress better. But by early this decade, Fiala found herself in extreme misery. “There was a whole year where I would spend entire days in the bathroom,” she recalled.
Then her brother, who had similar symptoms, told her about Kenneth Fine, a doctor in Texas whose mail-order testing convinced him he had celiac. He recommended she take the same test. “I kind of hemmed and hawed for a few months and then I said, okay, I’ll do it,” she said. “And then it suddenly hit me like a ton of bricks, that wow, this could be the answer. Once I got the test results, it seemed so obvious that there was no question. And I immediately stopped eating anything with gluten at that point.”
Fine’s tests, which does not actually diagnose celiac, require mailing a stool sample to his Enterolab. According to his web site, they check for the presence of antibodies and malabsorption due to “damage, even slightly so, by gluten (or perhaps other factors).” The site also claims his tests are “more sensitive than blood and saliva tests, or biopsies” and that gluten does not need to be introduced into the diet for test purposes if the person is already gluten-free. Dozens of testimonials praise the physician for finally solving their digestive problems.
Stanford celiac researcher Chaitan Khosla declined to speak on the legitimacy of Fine’s stool test, but said, “Online or by-mail diagnoses are generally not a good idea for most diseases.”
Others were less bashful. “This is an unproven method,” said Ellen Switkes. “As far as I’m concerned, if this is really a legitimate method of diagnosis then it should be peer-reviewed and it should be published. The fact that it is not published speaks volumes as far as I’m concerned. And it’s very expensive.”
The price tag for Fine’s Gluten Sensitivity Stool and Gene Panel Complete: $369. In response to e-mailed questions, Fine said his method is in the process of being peer reviewed, and that it is not, in fact, diagnostic, as some patients appear to have concluded.
The Celiac Disease Foundation recommends Denver-based Kimball Genetics, which began offering a DNA test in 2002. The test requires sending cheek cells, costs $395, and has a one-day turnaround. While it’s not diagnostic, it can rule out celiac as a possibility. The company also has an antibody blood test, which is only available through a doctor.
But many people who’ve spent years suffering while their doctors fumble feel they don’t need a clinical diagnosis to validate their suspicions. “We’ve been through enough with the medical profession with all of this for so many years that we don’t want to have an invasive procedure just for somebody to tell us what we already know,” said Fiala, referring to the endoscopy needed to sample a patient’s villi.
Khosla, however, believes a definitive diagnosis is crucial, since gluten sensitivity can indicate other, even more serious problems. It’s also possible for a person to just be gluten-intolerant or have a wheat allergy without having the genetically linked celiac disease.
Switkes fears undiagnosed celiacs could run into problems in environments where they can’t control their eating, such as a medical facility. “You’d think the hospital would be the safest place to eat,” she says. “Wrong! Don’t eat anything.”
The availability of better research could improve life for celiac patients. But celiac research barely exists. Quite simply, there’s no funding, according to Elaine Monarch of the Celiac Disease Foundation.
Dr. Alessio Fasano, director of the Center for Celiac Research at the University of Maryland, says that while there are only seven grants for celiac disease research funded by the National Institutes of Health, other diseases with a much lower incidence (such as Crohn’s disease, Type 1 diabetes, and cystic fibrosis) receive hundreds of grants. The average grant is about $250,000 per year, he said.
Celiac is a problem in biomedicine that has fallen through the cracks, Khosla said, “more serious than most think, more pervasive than most recognize.” That’s one reason he began researching it back in 1999. It’s also the only human autoimmune disease where the trigger is a defined chemical. Plus, his wife and son have celiac.
A few years ago, Khosla discovered that mammals have difficulty digesting gluten, and that the most difficult-to-digest portions are also those most toxic to celiac patients. Currently, he and Gary Gray, who heads the Palo Alto-based Celiac Sprue Research Foundation and is a director of the Stanford Celiac Sprue Clinic, are working on enzymes they hope will be able to neutralize gluten in moderate amounts.
Their work is entirely funded by the National Institutes of Health, but competition is fierce for the crumbs spent on celiac, and the money available is insufficient to attract new researchers that the field “desperately needs,” according to Khosla. Often, the NIH looks to the pharmaceutical industry to pick up where academic researchers leave off, but the absence of an existing celiac drug and the small number of official diagnoses on the books make it hard for Big Pharma to justify the investment to shareholders.
Two companies are looking into a pill, a supplement to help celiacs metabolize gluten, but that’ll take at least another six to eight years to develop, Monarch says. “For a disease that affects one out of 133 people in this country, that’s latent in many people, you’d think our federal government would be pouring money into this,” Switkes said. “But, it’s not.”