Fighting Celiac Disease in Ireland and the United States

Hall-Celiac Disease-Graduate Paper 1

Fighting Celiac Disease in Ireland and the United States

Kara Leigh Saunders Hall

Study Abroad Program: Public Health in Ireland

East Carolina University

June 16, 2012


Fighting Celiac Disease in Ireland and the United States

Some individuals refer it as “tummy troubles,” or “upset stomach,” while others may
comment on their “sour stomach” or “stomach bug.” Often, individuals may seek advice from a
physician or gastroenterologist and go years with misdiagnosis. The real culprit lurking behind
the shadows of these stomach concerns may be a disease that some physicians are just becoming
aware of, known as celiac sprue disease, meaning disease of the small intestine (Celiac Sprue
Association, 2012). Moreover, the disease is also known as coeliac disease in Ireland. Reports
from the University of Chicago’s Celiac Disease Center show 97% of Americans with celiac
disease are misdiagnosed a year, and the average individual may go 11 years with the disease
undiagnosed (Dunbar, 2012). Most commonly diagnosed in Caucasian individuals in the Irish
population due to genetic predisposition, the disease is growing more apparent in countries like
the United States (U.S.) too (The New York Times, 2010). The following includes information
on the background and general overview of celiac disease, including individuals diagnosed with
gluten sensitivity or gluten intolerance. Furthermore, comparisons between Irish and American
epidemiological data, morbidity and mortality, and health systems will explore how celiac
disease affects these countries. Finally, education and outreach examples for celiac disease will
feature what organizations and physicians are doing to spread awareness.

Background of Celiac Disease

The Celiac Sprue Association (2012) verifies first documentation of celiac disease
occurred in the second century, and it was not until the 20th century did researchers find
causative factors of celiac disease. The first documentation began around 250 A.D. from
Arataeus of Cappadocia detailing individuals with bowel concerns, but the first correlation
between an individual’s nutritional diet and the treatment of celiac disease came from Dr.
Samuel Gee in 1888, as well as the correlation between wheat and celiac disease from Dr.
William Karel Dicke in 1952 (Celiac Sprue Association, 2012). These individuals were
instrumental in discovering the evolution of celiac disease, including its detrimental affects on
those suffering silently from the disease.


The Coeliac Society of Ireland (2012) define the disease as an autoimmune disease that is
not contagious and affects children and adults when they intake gluten, which is found in wheat,
barley, and rye (with some individuals sensitive to oats). Thus, when an individual consumes
gluten, their bodies have an allergic reaction. This reaction prevents individuals from absorbing
key nutrients via the villi within their small intestines, because the villi suffered atrophy. The
symptoms an individual may experience when enduring celiac disease can include a host of
concerns. For instance, the symptoms may include: “diarrhea, constipation, weight loss, chronic
tiredness, anemia, failure for a child to thrive, chronic mouth ulcers, stomach pain and bloating,
indigestion, bone pain, moodiness or depression, infertility, recurrent miscarriages, flatulence,
and nausea” (Coeliac Society of Ireland, 2012).

Diagnosis and Treatment

The development of celiac disease could result from a combination of factors. Presently,
researchers believe these factors include the predisposition genetically to the disease, an
autoimmune response to certain antibodies; an environmental, emotional or physical event in an
individual’s life; and a person’s diet (Celiac Sprue Association, 2012). Before testing for celiac
disease, individuals need to continue to consume gluten-containing products for weeks prior to
testing. By participating in a gluten-free diet before testing, the results may come back
inconclusive. Diagnosis involves different types of tests. Some of the tests involved in celiac
disease diagnosis may consist of blood tests for antibodies, and a tissue biopsy from the wall of
the intestine to examine if an individual’s villi suffer from atrophy (Coeliac Society of Ireland,
2012). This is normally conducted via a physician inserting an endoscope in the individual’s
mouth, through their esophagus, and then into the stomach.

Treatment for celiac disease involves the incorporation of a gluten-free diet into a
diagnosed individual’s normal dietary routine. James, Mead, and Smith (2011) suggest
treatment that is “a life-long, gluten free diet” along with annual management by physicians so
that the physicians can help to “increase dietary adherence and monitor for complications of
nutrient deficiency, development of autoimmune disease, and lymphoma” (p. 30). By
incorporating a gluten-free diet into an individual’s life, he or she must eliminate all foods that
contain gluten in order to achieve healing of the atrophied villi. Therefore, the Mayo Foundation


for Medical Education and Research (2012) suggests the elimination of foods containing the
following: barley, bulgar, durum, farina, graham flour, rye, semolina, spelt, triticale, and wheat.
In order to accomplish a gluten-free diet, it may be beneficial for the diagnosed individual to
collaborate with a nutritionist or dietician so he or she has an outline of foods to eat each week.
Moreover, the Mayo Foundation for Medical Education and Research (2012) also recommends
an individual diagnosed with celiac disease to take vitamin supplements like calcium, folate,
iron, vitamin B-12, vitamin D, and vitamin K as to reduce the possibility of malnutrition. In
some severe instances, a diagnosed individual may need medication to help control the
symptoms of celiac disease. A physician may prescribe steroids for a certain period of time so
that an individual may have relief until the positive effects of a diet without gluten begin taking
place (Mayo Foundation for Medical Education and Research, 2012).

Health Complications

Symptoms of celiac disease may trigger other health complications, such as osteoporosis
due to the inability to absorb enough calcium, and cancer that could result from an increased risk
of lymphoma in the small intestine (Coeliac Society of Ireland, 2012). Other complications
associated with celiac disease include diabetes, lactose intolerance, and thyroid disease (Coeliac
Society of Ireland, 2012). Therefore, it is essential for individuals diagnosed with celiac disease
to talk to their physicians not only about symptoms from their disease, but also complications
that may result or have already occurred due to the disease.

While each individual diagnosed with celiac disease responds differently to gluten in
their diet, it is important to note that regardless of differing experiences, the symptoms are very
real to the individual. Mentally and emotionally, the disease may cause individuals a range of
feelings. Some of these feelings may include depression, anxiety, and irritability. The Coeliac
Society of Ireland (2012) indicates that these feelings are the product of repressed emotions from
diagnosis as well as denial of diagnosis, difficulty in accepting physical side effects, feeling
burdensome on others, and having to worry if others will remember dietary needs in social
situations. By continued education and awareness, planning and preparation, as well as building
a strong support system of family members, friends, and health care professionals, many


individuals diagnosed with celiac disease are able to manage their symptoms, maintain overall
well-being and good quality of life.

Gluten Sensitivity and Gluten Intolerance

While some individuals may experience some of the exact same symptoms of celiac
disease, these same individuals may receive testing from their physician that indicates they do
not have celiac disease. Even though sometimes the testing may reveal a negative for celiac
disease, it may not truly indicate whether the individual has celiac disease. This becomes the
case when an individual consumes part, if not all of a gluten-free diet before testing. Therefore,
it is of extreme importance that, before testing, an individual continues to eat and drink all
products that contain gluten. In the event however, that physicians rule out celiac disease, this
may still mean that the individual has gluten sensitivity or gluten intolerance. The Wall Street
Journal (2011) confirms that not only is gluten sensitivity different from celiac disease, but it
may affect as many as 1 in 20 Americans, or around 6% of Americans. Triggers of gluten
sensitivity involve drinks and food that contain gluten, although small amounts in moderation are
tolerable for some people. Some symptoms that a person with gluten sensitivity may experience
include stomach concerns, headaches, balance problems, and other issues (The Wall Street
Journal, 2011). Recommendations for people the gluten sensitivity still advises that the
individual—at the advice and disease management of a physician—begin and remain on a
gluten-free diet

Epidemiological Data Comparisons

Statistics in the past may have not accurately illustrated the ratio of Americans and Irish
individuals that have celiac disease. The reasoning behind this could consist of a number of
components. First, some individuals are not comfortable talking with others (family members,
friends, physicians, etc.) about stomach-related issues. In addition, some physicians have not
participated in adequate training on identifying and diagnosing celiac disease, which leads to
some patients not receiving a definite diagnosis for ten years or more. In the U.S., around 97%
of individuals with celiac disease have not received an accurate diagnosis—or a diagnosis at all
(The University of Chicago Celiac Disease Center, 2012). Interestingly, in the U.S, celiac disease


was not as well-known around ten years ago, and ratios were far greater (for example, 1 in
1,000). Currently, ratios by the University of Chicago Celiac Disease Center (2012) verify that 1
in 133 Americans have celiac disease. This portrays a disease ratio that is far more common than
previously believed. Even more alarming, The Wall Street Journal (2011) shows that the rate of
celiac disease in the last 50 years within the U.S. has increased almost four-fold, and some
physicians believe that individuals are not born with the disease, but instead, they believe the
environment plays a crucial role in the development of celiac disease. Thus begs the question,
“what in the environment could trigger this development?” Research indicates that with
agricultural changes to wheat, the protein content of some food ingredients has increased, which
could lead to an increase of gluten in an individual’s diet (The Wall Street Journal, 2011).
Overall, the U.S. has just really begun to increase awareness surrounding celiac disease. The
reason behind the increase in awareness may come from the dramatic increases in celiac disease
rates over the past few years. Some theorize the reasoning behind the U.S. have a late start to
celiac disease awareness could involve the U.S. government’s resistance to providing research
grants to this autoimmune disease, as most autoimmune diseases receive grants
(GlutenFreeHelp.info, 2012). However, within the U.S., some visible changes have already taken
place at some common restaurants offering gluten-free menus. For example, on the east coast, in
North Carolina, restaurants like Bonefish Grill, Buffalo Wild Wings, Lone Star Steakhouse,
Maggiano’s Little Italy, Mama Fu’s Asian House, Mellow Mushroom, Moe’s Southwest Grill,
Olive Garden, Outback, and T.G.I Friday’s (and many more) offer gluten-free options. On the
west coast, in California, restaurants like Asgew Grill, Claim Jumper, Dawgs!, Easy Creole, Le
St. Tropez, LIBA Falafel Truck, Melting Pot, P.F. Chang’s China Bistro, Pei Wei Asian Diner,
and Romano’s Macaroni Grill.

Within Ireland, statistics show 1 in 100 people may have celiac disease (Coeliac Society
of Ireland, 2012). This ratio (more than likely) still does not represent the total population of
Irish individuals that are undiagnosed. Even worse, there remains the possibility of under-
diagnosis, as some people will not receive the medical attention needed for the disease, leading
to the naming of, “the silent disease.” The Coeliac Society of Ireland (2012) verifies that for
every one person diagnosed in Ireland with celiac disease, there remains 5-10 undiagnosed.
Many individuals do not receive a diagnosis of celiac disease until after the age of 40 in Ireland,


much like within the United States, but an individual can now obtain a celiac disease diagnosis at
any age. This illustrates the need for communities to begin offering alternative options that are
readily accessible and contain only gluten-free products that have not endured cross-
contamination with other products containing gluten. Within Ireland, the awareness of the
condition throughout the community, including funding has made it a disease recognized as a
real concern. The food industry, including restaurants within Ireland have made
accommodations for several years for people diagnosed with celiac disease, gluten sensitivity
and gluten intolerance (Coeliac Society of Ireland, 2012). This awareness and ability to adapt to
Irish individual’s dietary concerns provides a great model for other countries (like the U.S.) that
are just beginning to make needed changes.

Morbidity and Mortality Comparisons

The quality of life of a person diagnosed with celiac disease is a very significant topic,
along with the threat of death due to health complications associated with the disease. In regards
to morbidity, health complications such as osteoporosis and cancer could arise due to celiac
disease (as mentioned before). Studies show increased rates of hypothyroidism, and reduced
body mass index, cholesterol, and ferritin (Godfrey et al., 2010). With the aforementioned
symptoms of celiac disease, people diagnosed are also more at risk for short stature, lymphomas,
adenocarcinoma, miscarriages, along with bearing infants that have congenital malformations,
(Coeliac Society of Ireland, 2012). In addition, in both the U.S. and Ireland, celiac disease is
rarely lethal, but health complications from the disease could result in mortality. Some research
shows that regardless of the country an individual lives in, he or she may have a two-fold
increase in overall mortality, and the rate of mortality increases if an individual has just received
a diagnosis of celiac disease (Corrao et al., 2001). Other research depicts conflicting data, as 21
papers within 25 years show either a 0.52% decrease in mortality rates among individuals
diagnosed with celiac disease, or a 3.9% increase, as compared to the general population
(Celiac.com, 2012). However, if an individual receives a diagnosis of celiac disease, and is
symptomatic, he or she is more likely to have an increased mortality rate (Celiac.com, 2012).
Overall, the consensus (regardless which country) remains—if an individual is diagnosed with


celiac disease, it is imperative that he or she partner with their physician so that he or she can
successfully manage symptoms.

U.S. and Irish Health Systems Comparisons

The health systems of the U.S. and the Republic of Ireland provide very different
landscapes of health care to its citizens. However, they are quite alike in that both countries are
undergoing reforms to their health systems. Beginning with Ireland, the government exercises
rights over the health system, via the Department of Health and Children, with guidance by the
Minister of Health and Children (McDaid, Wiley, Maresso, & Mossialos, 2009). With the
sweeping health reforms in Ireland, changes occurred to create a new health structure. This
includes the Health Service Executive (HSE). The HSE is the largest employer in Ireland, and
takes responsibility for the provision of health care and personal social services (McDaid et al.,
2009). Other organizations within the HSE include the Irish Cancer Screening Board, the Irish
Blood Transfusion Service, the Department of Social and Family Affairs, and the Department of
Justice, Equality, and Law Reform. Furthermore, the Health Information and Quality Authority
(established in 2007 due to reforms) is “responsible for developing health information, setting
and monitoring standards, promoting and implementing quality assurance programs nationally,
and overseeing health technology assessments” (McDaid et al., 2009, p. xx).

The types of insurance citizens have in Ireland can range from public to private health
insurance. Around half of the population in Ireland have voluntary private health insurance
through the Voluntary Health Insurance Board, a non-profit with board members elected by the
Minister of Health and Children (McDaid et al., 2009). Ireland also has a system of insurance
regulation. To regulate private insurance, the Health Insurance Authority ensures that
competition exists through community rating, open enrollment and lifetime coverage (McDaid et
al., 2009). In addition, the health care system has a unique financing structure that does not
involve social security contributions. The system is mostly funded through taxes, with the
remaining amount funded through “private sources, in particular out-of pocket-household
expenditures on general practitioner visits, pharmaceuticals and public/private hospital stays, as
well as payments to voluntary health insurance providers” (McDaid et al., 2009, xxi). For
individuals with additional needs (such as those living in poverty), they are entitled to most


services free of charge. These individuals make up around 30% of the population (McDaid et
al., 2009, xxi). Within the U.S., Medicare is available to those with disabilities, along with
individuals 65 years and older, as well as Medicaid, which is available to individuals with
financial need. Ireland also focuses on the importance of primary care to prevent disease and
illness rather than the reactive focus of the U.S.

As for improvements and ongoing tasks, Ireland has made a consistent effort and placed
emphasis on increasing inpatient beds, along with improvements in overall medical practice,
increasing staff members, and increasing the skill set of these members via a multidisciplinary
approach. Since Ireland ranks the lowest out of all Organization for Economic Co-operation and
Development countries (OECD) with the number of general practitioners per 1000 population,
an enhanced prominence envelops this essential matter (McDaid et al., 2009). Moreover, Ireland
tackles mental health practices throughout the country. The country hopes to strengthen their
multidisciplinary teams to improve the state of mental health care delivery. Reforms also
include medical training and education, which began in 2006, highlighting the need for
modernization. In addition, Ireland has plans to extend their information and communication
technologies and create an electronic health record system (McDaid et al., 2009). Lastly,
Ireland’s health care system is focusing on primary care strategies that center on 400-600
multidisciplinary teams (McDaid et al., 2009). Another provision of service targets access to
primary and secondary care in Ireland. Some individuals who do not have a medical card, nor
private health insurance “reduce inappropriately their use of primary health care services to
avoid high out-of-pocket payments” (McDaid et al., 2009, p. xxiii). To address these concerns
over access to care, Ireland introduced several new reforms. The general practitioner visit card
provides coverage to 230,000 more individuals, along with implementation of “out of hours”
general practitioner cooperatives, increased number of acute beds, reduced waiting times, and
increased public sector-only contracts (McDaid et al., 2009). The final improvement to help
combat inequities involves the National Treatment Purchase Fund. This fund allows individuals
waiting for three months or more to receive treatment in either Ireland or the United Kingdom
via the private sector (McDaid et al., 2009).


To highlight the U.S. health care system, it is crucial to point out the differences in
overall strategy. Whereas in Ireland, the spotlight is on primary care-driven initiatives, the U.S.
revolves around a primarily chronic disease and reactive initiative. About 80% of health costs
spent target 20% of the population, which significantly intertwine with the aging population and
chronic diseases (Kovner & Knickman, 2011). Much like in Ireland, cardiovascular disease
takes the precedent as the leading cause of death. Defining features within the U.S. health
system involves how institutions deliver care, the role of health professionals, medical
technology, electronic communication, emergence of new drugs, tensions between the free
market and governmental control, and the dysfunctional financing and payment system (Kovner
& Knickman, 2011). Unfortunately, the health status in America really comes down to whether
or not an individual or a family receives a definition by poverty standards as poor.

Issues within the U.S. ( in some ways) mirror Ireland. While Ireland has its own reforms
in place, a significant reform within the U.S. involves the Patient Protection and Affordable Care
Act of 2010, with various rules enacted that occur in a gradual state. This act aims to improve
access and coverage to the 50.7 million Americans lacking health insurance as of 2009 (Kovner
& Knickman, 2011). In general, the U.S. health care system differs from many OECD countries
in regards to the health care system. This is due to the prominence that the U.S. gives to the
private health insurance organizations like Aetna, United Health, Cigna, Blue Cross/Blue Shield,
etc. Government regulation of these private health insurance companies in the U.S. remains at a
minimum, unlike in Ireland and most other OECD countries. As Kovner and Knickman (2011)
state, “in economic terms, the U.S. system is much less progressive because low income
individuals pay a higher percentage of their income for health care than do the wealthy” (p. 73).
Thus, in the U.S. an ongoing topic revolves around health disparities, and then need the address
this growing issue.

Likewise, within the U.S., rural areas have health professional shortages, or some
physicians will refuse to treat patients who have Medicare or Medicaid. Other areas of
importance for the U.S. health care system include slowing growth of health care costs, and
encouraging healthy behaviors. Kovner and Knickman (2011) state, “healthy behavior can help
people disease and injury or prevent disease or disability from worsening” (p. 6). In addition, the


variability of the public health system is another area of improvement, as well as the
coordination, transparency, and accountability of local systems of care. This need for local
systems of care arises from “a lack of integrated and electronic record systems, but by cultural
traditions of independence” (Kovner & Knickman, 2011, p. 6). The U.S. found that their best
health results generated from accountable and large health care systems throughout the country.
This included systems like Kaiser Permanente, Mayo Clinic, Cleveland Clinic, Geisinger Health
System, and the Veterans Health Administration (Kovner & Knickman, 2011).

As a final note on the U.S. health care system, it is vital to discuss the thoughts of the
public in regards to government involvement in health care. Whether it is due to lack of
awareness, many Americans do not understand the overall amount of involvement the U.S.
government really has in health care. The tagline, “get government out of my healthcare”
remains the perception of many Americans. However, many within the U.S. do not know that
since the late 1700’s, the government has had an essential role in health care (Kovner &
Knickman, 2011). The responsibility for health care within the U.S. is actually shared my
various U.S. governmental departments. To name a few, the governmental departments consist
of: the Social Security Administration, the Department of Labor., the Department of Homeland
Security, the Department of Defense, the Department of Veterans Affairs, the Department of
Transportation, the Department of Education, etc. (Kovner & Knickman, 2011).

Education and Outreach for Celiac Disease

It is vital to any public health concern to create programs of education and outreach that
help people to not only become more aware of the public health concern, but also have
manageable avenues to take to help prevent or treat the public health concern in their own lives.
For example, in the U.S., the National Foundation for Celiac Awareness (NFCA) provides
training and education for health care professionals, food industry professionals, and patients and
professionals. For health care professionals, the foundation offers two continuing education
classes to dieticians, as well as health care programs targeting celiac disease for various
healthcare disciplines, and a medical education module for primary physicians and nurses
accredited by the Accreditation Council for Continuing Medical Education (NFCA, 2011). The
organization also provides gluten-free foodservice training for the food industry. Courses that


the NFCA (2011) conducts include the “Great Business Association” for individuals and
businesses, “Great Kitchens” for chefs and food service managers, and “Great Schools, Colleges,
and Camps” for dining hall directors, managers, and staff. Finally, the NFCA provides archives
of gluten-free webinars to patients, professionals, and anyone interested in the content. Many of
the webinars not only discuss celiac disease, but also other concerns such as links to ADHD,
autism, non-celiac gluten sensitivity, and heart health.

Another great example of education and outreach for celiac disease centers on long-term
care management. Since the course or duration of celiac disease is different for each individual,
the long-term care management component enables the physician to specifically tailor the dietary
needs of the patient. Regular physician follow-ups may improve dietary adherence, and the way
that a physician interacts with the patient is crucial to adherence as well. James, Mead, and
Smith (2011) suggest that physicians style their patient appointments to meet the needs and
wants of the patient. For example, instead of the traditional model of face-to-face consultation,
physicians may utilize more modern, or creative, strategies. This could include online health
interventions, webcams, telemedicine, and telephone reviews. James, Mead, and Smith (2011)
advise that the long-term management approach ultimately needs to “be cost-effective, minimize
unnecessary hospital visits, encourage self-efficacy, meet patient’s individual needs, and involve
the multi-disciplinary team” (p. 33). Furthermore, a tactic for outreach and education for those
diagnosed with celiac disease could include the virtual clinic system. The advent of the virtual
clinic system began in 2006, with adult patients diagnosed with celiac disease. They providing
feedback that they had to pay excessive hospital parking charges, and were unpaid from missing
time from their jobs, just to visit their doctor and receive their blood results (James, Mead, &
Smith, 2011). This feedback, along with the need to reduce the number of follow-up hospital
visits provided the inception of the virtual clinic system. The virtual clinic system focuses on
patient empowerment and self-efficacy, but also the clinical expertise of the physician (James,
Mead, & Smith, 2011). This intertwines not only the patient’s own knowledge and management
of his or her disease, but also the physician’s own understanding of the disease process and
clinical management. The virtual clinic system utilizes a database to send out virtual clinic packs
annually to individuals diagnosed with celiac disease. The pack includes “how the process
works, contact details (including local and national celiac support mechanisms), a symptom


questionnaire, and blood test request forms” (James, Mead, & Smith, 2011, p. 34). In the event a
patient responds “yes” to any of the questions on the symptom questionnaire, he or she can
phone the physician as to receive the care needed. After an examination of the blood results, the
database receives an update with the patient’s blood results, and the patient and his or her general
practitioner will obtain a letter with data from the blood results. If the blood results are
abnormal, a gastrointestinal nurse specialist contacts the patient, and the patient will receive
disease management by his or her physician. For patient education and outreach, James, Mead,
and Smith (2011) verify that the virtual clinic system, in tandem with the long-term celiac
disease management approach has already showed success, and its model could be applied
throughout the world, with an emphasis on implementation for patients at the earliest stage
possible.

A final example of education and outreach for celiac disease involves the month of May
designated in the U.S. as Celiac Awareness Month. The Celiac Disease Foundation (2012)
provides information on patient support groups, along with information to medical and
healthcare professionals. In addition, this organization collaborates with “Team Gluten-Free,” a
fundraising organization. This organization participates in walk/run races throughout the U.S.,
with proceeds going toward summer camp scholarships for children on a gluten-free diet, as well
as research, and support and awareness programs (Team Gluten-Free, 2009). Moreover, the
Celiac Disease Foundation raises awareness about ways to promote education and outreach. For
example, they encourage individuals to not only to write a member in their congress about
designating May as Celiac Awareness Month, but also placing brochures about Celiac Disease in
doctor and dentist offices. The organization even suggests having a gluten-free dinner party for
those diagnosed and not diagnosed with celiac disease to show that gluten-free food can still be
fantastic! As a current awareness model, the Celiac Disease Foundation even presents
information on Domino’s recent promotion of “Gluten-Free Pizza.” Therefore, the Celiac
Disease Foundation (2012) was able to identify that while the pizza is touted as “gluten-free,”
people with celiac disease should still not eat this pizza as all Domino’s locations do not have the
operational space to ensure that gluten from their normal processing of dough is not
contaminated with the gluten-free pizza dough and ingredients.


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Fighting Celiac Disease in Ireland and the United States

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Fighting Celiac Disease in Ireland and the United States