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For other articles and previous issues click here. August 23, 2004 The
Challenges of Living Gluten-Free Coping with celiac disease is emotionally challenging, but an optimistic outlook can ultimately prevail. Celiac disease (CD) is characterized by an inability to tolerate gluten, a protein found in rye, barley, wheat, and perhaps oats. All that’s needed to tame the disease is a diet free of gluten. It sounds simple enough, but as anyone who’s tried it will testify, coping with gluten intolerance is no easy matter. To fully escape the symptoms and consequences, affected individuals must adhere strictly—and for life—to diets that do not permit bread, cookies, crackers, cake, pasta, pizza, and a host of other foods. Patients with CD face a range of practical challenges and emotional repercussions to the disease itself and the diet it necessitates. While many think of CD as a benign food intolerance, left untreated, it can lead to the development of symptoms related to the digestive tract and can affect nerves, bones, fertility, hormones, skin, night vision, and blood clotting, says Joseph A. Murray, MD, a Mayo Clinic gastroenterologist and specialist in the disease. In addition, it can cause vitamin deficiencies, anemia, osteoporosis or bone disease, and neurologic problems. Its most serious consequence, although uncommon, is a slightly increased risk of malignancies. The Long Road to Diagnosis CD, until recently, was considered to be a very rare condition among Americans. According to Murray, data from work that’s been done in the counties surrounding the Mayo Clinic suggest that the diagnosis is being made more often than it was 10 years ago. It’s uncertain, however, whether or not it’s truly more prevalent now. “It’s not clear whether we’re finding it because we’re looking harder or because more cases are occurring,” he says. Because it’s been considered uncommon in the United States, there hasn’t been a great deal of attention paid to the condition, says Murray, who adds that “there hasn’t been any kind of wellspring of expertise that’s passed on to the next generation of medical trainees. In medical school, it’s so hard for a disease like this to compete with cancer, heart disease—the big killers. So, while CD is not as rare as we might think, it’s crowded out of medical education by these other things.” If doctors believe it to be rare, he explains, they won’t be inclined to look for it. Some individuals may have the disease in their bodies affecting their intestines and have absolutely no symptoms for a long time. As evidence of this, says Murray, CD can be found in approximately 10% of individuals with family members diagnosed with CD, but one-half of them will have no symptoms. When symptoms do occur, they most commonly are diarrhea, abdominal discomfort (severe pain after eating, bloating, or cramping), excess flatulence, lactose intolerance, weight loss, or anemia. Murray says the discovery of anemia is the single most common factor leading to CD diagnosis. While diarrhea is typical, 20% of patients with CD will have constipation on a regular basis, he adds. These symptoms may cause CD to be difficult to distinguish from irritable bowel syndrome—a catchall phrase, he explains, for digestive conditions that involve abdominal pain and some disordered bowel habit (typically constipation, but occasionally diarrhea). While it’s genuinely difficult for doctors to sort through these complaints that may be vague or suggestive of a number of conditions, one particularly unpleasant telltale clue is steatorrhea, which Murray describes as “a very malodorous, bulky stool that often leaves an oil slick on the toilet water.” If someone complains of this condition, CD should be at the top of the list of potential diagnoses. Still, steatorrhea is present in patients with CD only approximately 20% of the time. “Many doctors were taught in medical school to consider CD when it occurred, but they weren’t taught to think about CD when it doesn’t occur,” he says. Symptoms, says Korn, can be all over the board, contributing to difficulty obtaining a diagnosis. “Some people are just fatigued, have headaches, or experience joint pain,” she says. “They’re misdiagnosed as having chronic fatigue syndrome, fibromyalgia, unexplained headaches, or irritable bowel syndrome.” Freelance writer and CD patient Joanna Cosgrove recalls that since her chief symptom was a rash known as dermatitis herpetiformis, her road to diagnosis was more than a little bumpy. “I endured more than a few odd treatments like light therapy, steroid shots, and medicinal baths to get rid of the rash,” she recalls. “It took over a year for someone to finally realize it was directly correlated to the food I ate.” According to Murray, for every case that is diagnosed, there are probably 20 that go undetected. The difficulty in pinpointing CD is compounded by a number of factors. According to Mary Schluckebier, executive director of Celiac Sprue Association, USA (CSA/USA), “Doctors have been taught in medical school that celiac sprue is extremely rare, so it’s not high on the list of culprits when presented with a patient with symptoms that mimic other diseases thought to be more common.” The symptoms, because they’re not specific to the disease, don’t always raise suspicion for CD. “Lots of people get diarrhea, and there are a lot of causes of diarrhea,” Murray says. “The same is true of other symptoms such as abdominal pain, chronic fatigue, and joint pain.” Additionally, he observes, “most doctors aren’t aware of the diagnosis or don’t entertain the possibility. It’s not on their radar screen.” Although few patients will independently make a
connection between their symptoms and the ingestion of gluten, many
will suspect that they have the condition after reading about it
or learning about a family member who has similar symptoms and has
been diagnosed. Roughly one-third of the time in newly diagnosed
cases, the patient suggests the diagnosis to the doctor. The index
of suspicion should be heightened for individuals who have any of
the following: a family history of CD, unexplained chronic diarrhea,
digestive symptoms that occur after eating, lactose intolerance,
infertility, thyroid disease, Sometimes, patients who suspect CD may eliminate gluten from their diets in an effort to self-diagnose, but it’s a strategy that can backfire. “A common scenario is that a patient hears about this possibility and avoids gluten, feels better, and then three or four months later, goes to a doctor and says, ‘Do you think I could have CD? I went on the diet, and I feel a lot better.’ The doctor orders a blood test or even a biopsy, which comes back negative or equivocal, and concludes that the patient doesn’t have the disease,” says Murray. “Wrong. The patient may still have CD, but the self-treatment has made the test results negative.” On the other hand, he explains, some who feel better after eliminating gluten may not have CD, but may feel better simply because individuals with any type of digestive problem may see an improvement in symptoms simply because they’re not eating as much. The Emotional Toll Another typical emotional consequence, says Murray, is a grief reaction. Sometimes, he suggests, this is cloaked in denial: “It couldn’t be bread, wheat, cookies, pizza, or cake. It just couldn’t be.” There’s also anger at having a chronic disease, at healthcare practitioners for failing to diagnose them, and at food manufacturers for making it difficult to know what’s in their products. Eventually, people get to the acceptance stage, at which time they can acknowledge the restrictions in their diet, but realize that they’re healthy. For some, another emotional consequence of CD is social isolation. “So much of what we do socially involves food—school, church, sports, and even work-related activities often revolve around meals and food,” Murray says. “It’s very much a part of our social lives, and when someone suddenly can’t eat bread, cookies, or cake, they lose that spontaneity, and some may feel a degree of social isolation.” There are specific emotional consequences for children who may feel left out at school—“the kid who always has to bring his own stuff,” explains Murray. “When I was first diagnosed,” says Cosgrove, “my mom would pack rice cake peanut butter and jelly sandwiches for lunch, which made me feel very self-conscious in the school cafeteria because kids constantly made fun of my ‘weird’ sandwiches.” Thankfully, she says, there are now better gluten-free options for children and adults. “It used to be that there was a drastic taste ‘learning curve’ because gluten-free foods were practically unpalatable in comparison to foods we had been accustomed to prior to diagnosis. Not anymore,” she says. Educated parents and support groups can empower children and teach them how to get around their limitations without giving up their social activities and how to find palatable foods. Adolescents also have a difficult time coping with CD. Murray explains: “You take whatever kids have and whatever adults have and you kind of add them together—add in the adolescent hormones, the need for acceptance, and the desire not to stand out—and there’s a much greater challenge for compliance with the celiac diet.” CD, acknowledges Murray, can also have a negative impact on the family and other relationships. “It’s not uncommon to see people who’ve divorced because they’ve been sick for so long,” he says. “Even intact families can have difficulty juggling the needs of the individual with CD and those with no dietary restrictions.” There are a number of questions, says Murray: “Where do you get your food and how do you cook it? If you’re the main provider for the family, what do you do for yourself? Do you cook pizza for everybody else and then think about yourself afterward?” He recommends that the individuals with CD who cook for their families cook what they can eat and let everyone else eat it as well. This is especially important for working mothers or fathers who can’t possibly cook two different meals. “Obviously, when people without limitations go out, they can eat whatever they wish, but core meals should not be separate.” Resources Support Groups Family and Friends Dietitians Additional Resources Keep Patients Focused on Hope
It’s an attitude championed by Murray. Attitude and hope do wonders, he says. “I tell patients routinely that experiencing the aftermath of CD is like a grief reaction. I tell them, ‘You have lost something in your life. You’ve lost the ability to go out and eat bread or sandwiches. People drive down the highway and pull in to a restaurant and get a sandwich, and you’re not going to do that. So, even though you may not realize it, there will be an emotional impact from a diagnosis on how you work, feel, and travel. So, recognize that, but also think of what else you’re losing: your diarrhea, how ill you feel, headaches, and chronic fatigue.’” He reminds patients that they will struggle, but they will feel dramatically different. “It’s important for us as professionals not to give negative vibes. If you tell the patient that ‘this is a terrible, impossible diet,’ you’re consigning them to failure, and they’re not even going to have a chance. They will fail right out of the box.” Murray tells patients to be positive. He reminds them that they might not like the diet, but they will get better. — Kate Jackson is a staff writer at For the Record.
Celiac Sprue Association, USA Gluten Freedom Gluten Intolerance Group Raising Our Celiac Kids |
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