A
Wining Attitude Toward Living Gluten-Free
By Kate Jackson
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.
CD patients face a range of practical challenges
and emotional repercussions to the disease itself and to the diet
it necessitates. Fortunately, registered dietitians can help those
with gluten intolerance meet the challenges of living gluten-free
by empowering them with dietary strategies and coping resources.
While many think of celiac disease as a benign food
intolerance, left untreated, it can lead to the development of symptoms
related to the digestive tract and can affect the nerves, bones,
fertility, hormones, skin, night vision, and blood clotting, says
Joseph 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
According to author and celiac expert Danna Korn, the average length
of time between onset of symptoms and diagnosis is 11 years. “Sadly,”
she says, “this type of delay dramatically increases an individual’s
risk of developing autoimmune disorders, neurological problems,
osteoporosis, and even cancer.”
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, if 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.” 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.
The discovery of anemia, says Murray, is the single
most common factor leading to a diagnosis of CD. 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 that, he advises, 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.”
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. 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. It took
over a year for someone to finally realize it was directly correlated
to the food I ate,” she says.
According to Murray, for every case that is diagnosed,
there are probably 20 that go undetected. The average length of
time from the moment a person complains until he or she is diagnosed,
he says, is between eight and 11 years. 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, says Murray, 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. The same is true of other symptoms such as
abdominal pain, chronic fatigue, and joint pain,” says Murray.
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—eg, a brother, sister, or
cousin—who has similar symptoms and has been diagnosed. Roughly
one-third of the time in newly diagnosed cases of CD, says Murray,
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, osteoporosis—particularly in a young person—or
immune disorders such as type 1 diabetes, Lupus, or certain forms
of arthritis.
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
CD has the potential to significantly affect an individual’s
emotional life, but, observes Schluckebier, “Much of how CD
affects a person emotionally has to do with how that person deals
with any change in life.” The emotional toll will vary from
patient to patient depending on their nature, temperament, and lifestyle.
“If you have patients who have been very sick for maybe 11
years, and you tell them the answer, there is relief,” says
Murray. “There can be joy at the fact that they can finally
feel better and at the realization that they themselves can make
it better with the help of a dietitian. It’s the patients
making themselves better, not me giving them some dangerous or powerful
medication.” That, he says, is the overwhelming initial emotion
among people who’ve been sick. The next emotion, he suggests,
is shock because the problem—bread, the staff of life—is
causing pain.
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,
he says, 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,
he explains, people get to the acceptance stage, at which time they
can acknowledge the restrictions in their diet, but realize that
they’re healthy.
Another emotional consequence of celiac disease
for some is social isolation, observes Murray. “So much of
what we do socially involves food—school, church, sports,
and even work-related activities often revolve around meals and
food. 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.”
This, he says, “is one of the areas in which an expert dietitian
and a support group help people to adapt and be empowered rather
than feeling put down.”
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.” 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.
CD taps into emotional reactions linked to religion
as well. “For example,” says Murray, “some churches
have communion that’s made of wheat wafers or wheat bread,
and that raises significant emotional issues among people for whom
sharing communion is a very important part of their religious observance.
Often, I recommend that patients work with their pastors or other
religious leaders, who are often very accommodating in making allowances
for them.”
Adolescents, furthermore, have a very difficult
time coping with celiac disease. 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.”
Celiac disease, acknowledges Murray, can also have
a negative impact upon the family and other relationships. “It’s
not uncommon to see people who’ve divorced because they’ve
been sick for so long.” And, 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
Schluckebier says, “Now more than ever, information and resources
are easily accessible. Through the Internet, one can contact the
National Institutes of Health, medical libraries, and support groups
such as the Celiac Sprue Association.”
Support Groups
“Local and national support groups such as CSA are a wonderful
place to find support,” says Schluckebier. “Meeting
others who have ‘been there, done that’ is an important
part of coping.” Agrees Murray: “Meeting somebody who’s
been through it and sharing with somebody who’s already suffered
from the disease and worked through it at the support group is essential
for coping and adaptation.”
Family and Friends
“The patient’s own circle of family and friends are
important as well,” says Schluckebier. “When those around
you understand and are supportive of your situation, it becomes
‘normal’ more easily,” she explains. “The
most helpful thing for a person with CD is an advocate—someone
who will listen, support, and be a friend. Knowing that they’re
not in it alone goes a long way to helping celiacs cope with their
disease.”
Dietitians
To educate individuals with CD about the disease and its dietary
restrictions, a well-educated, well-experienced dietitian is crucial,
says Murray. Patients need a professional who understands the dietary
restrictions, he says, but who can also evaluate their needs in
the context of their lifestyles. “The way our dietitians approach,
for example, a traveling salesman who eats out 200 days of the year
may be very different from the way they would approach and counsel
the patients who stay at home, do all the shopping, and cook for
themselves,” explains Murray. These are very different challenges,
and dietitians are adept at providing the right strategies for the
individual’s circumstances and needs. “There are people
who are very much into cooking and baking, and they tend to adapt
very quickly once you tell them the resources they need,”
says Murray. On the other hand, he explains, a person who has never
cooked in his life, eats out a lot, or eats food that’s preprocessed
or prepared is an entirely different challenge.
Another crucial way in which dietitians can help
CD patients, observes Murray, is by providing them with up-to-date
resources. “It’s vitally important that the information
the dietitian has is up-to-date,” he advises. “It should
not be five years old or 10 years old. It still happens sometimes
that patients get out-of-date information, and that should be tossed
out.”
In addition to providing resources, education, and
customized dietary instructions, dietitians also play an important
role, says Murray, by addressing ancillary issues. “Despite
the fact that CD can cause malabsorption, a lot of people experience
weight loss, and a lot of people are overweight,” observes
Murray. “It’s not just about telling them what’s
gluten-free. You have to customize that to the other dietary needs.”
Diabetes and CD frequently overlap, he notes. “Sometimes people
are concerned about cholesterol issues, and sometimes they need
information on what vitamins to take or safe sources of calcium
or vitamin D, which is frequently recommended for celiacs.”
An equally important responsibility for dietitians
is not only to refer celiac patients to support groups, says Murray,
but also to actively suggest or advocate that they join a group.
“In our area and in many centers, there are one or two dietitians
among a practice who deal with the CD patients,” he explains.
“They are often liaisons or advisors to the local support
group.” The groups can provide patients with exceptional resources.
The last challenge is to ensure that the celiac
patient is followed. It’s not enough, says Murray, to provide
information. It’s important, he says, to follow up either
by telephone or by scheduling an appointment for a follow-up consultation
because the gluten-free diet is surely the most difficult diet to
teach or learn, and it’s important to be sure that it’s
done correctly.
Additional Resources
Murray notes that there are lots of resources for CD patients. Some,
he observes, are excellent, and some are downright dangerous. Whether
it’s a book, group, or Web site, he advises scrutinizing resources
for reliability. If something sounds too good to be true, he suggests,
it probably is. Make sure that resources are reputable and up-to-date.
If it’s a Web site, he advises, investigate who supports the
site. Is it a professional or lay organization? Is it done by an
individual? If so, what’s that person’s background and
credentials? How often is it updated? What sorts of references does
it supply for statements it makes? Beware, he says, of recommendations
for dietary modifications that are not based on science.
Keep Patients Focused On Hope
One of the great myths about CD, suggests Korn, is that the diet
is impossible and horrible. “I’ve even heard of doctors
telling patients, ‘I think you may have CD, but I’m
not going to diagnose you with it because the diet stinks.’”
Wrong, says Korn. “It’s easy to learn to love the lifestyle.
It’s delicious, nutritious, and no more expensive than a regular
diet if you know how to shop.”
It’s an attitude championed by Murray. Attitude
and hope do wonders, he suggests. “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 that 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.
An informed patient with access to resources can
better face the challenges of CD, and dietitians are in a prime
position to empower patients with strategies, facts, and referrals.
“Knowledge,” says Schluckebier, “is power, and
power means confidence and freedom.” It’s not only the
dietitian’s skills, but his or her attitude, says Murray,
that will empower the patient. “Your attitude will make a
difference right from the beginning. You’ve got to be enthusiastic,
you’ve got to motivate them, and you have to show them the
interest.” He recalls the words of a support group leader
who, at the end of her lectures, used to advise, “Send your
patient off with champagne, not tears.”
— Kate Jackson is a staff writer for Today’s
Dietitian.
Resources
Expert Danna Korn recommends the following national resources:
Raising Our Celiac Kids
www.celiackids.com
Celiac Disease Foundation
818-990-2354
www.celiac.org
Gluten Intolerance Group
206-246-6652
www.gluten.net
Celiac Sprue Association, USA
402-558-0600
www.csaceliacs.org
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