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Canadian Digestive Health Foundation Public Impact Series 4: Celiac Disease in Canada. Incidence, Prevalence, and Direct and Indirect Economic Impact

Authors:
Richard N Fedorak at University of Alberta
Richard N Fedorak
Connie M Switzer
Connie M Switzer
Connie M Switzer
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Ron J Bridges
Ron J Bridges
Ron J Bridges
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Abstract

RN Fedorak, CM Switzer, RJ Bridges. Canadian Digestive Health Foundation Public Impact Series 4: Celiac disease in Canada. Incidence, prevalence, and direct and indirect economic impact. Can J Gastroenterol 2012;26(6):350-352. The Canadian Digestive Health Foundation initiated a scientific program to assess the incidence, prevalence, mortality and economic impact of digestive disorders across Canada in 2009. The current article presents the updated findings from the study concerning celiac disease.
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Can J Gastroenterol Vol 26 No 6 June 2012350
Canadian Digestive Health Foundation Public Impact
Series 4: Celiac disease in Canada. Incidence,
prevalence, and direct and indirect economic impact
Richard N Fedorak MD FRCPC
1
, Connie M Switzer MD FRCPC
1
, Ron J Bridges MD FRCPC
2
1
Division of Gastroenterology, University of Alberta, Edmonton;
2
Division of Gastroenterology, University of Calgary, Calgary, Alberta
Correspondence: Dr Richard N Fedorak, 2-14A Zeidler Building, University of Alberta, Edmonton, Alberta T6G 2X8.
Telephone 780-492-6941, fax 780-492-8121, e-mail richard.fedorak@ualberta.ca
Received for publication October 3, 2011. Accepted October 7, 2011
T
he Canadian Digestive Health Foundation (CDHF) launched a
scientific project to define incidence, prevalence, mortality and
economic impact of digestive disorders across Canada. Detailed infor-
mation was compiled on 19 digestive disorders through systematic
reviews, government documents and websites. This information was
published as Establishing Digestive Health as a Priority for Canadians, The
Canadian Digestive Health Foundation National Digestive Disorders
Prevalence and Impact Study Report, and released to the press and gov-
ernment in late 2009 (www.CDHF.ca). The CDHF Public Impact
Series presents a full compilation of the available statistics for the
impact of digestive disorders in Canada.
Previous studies have indicated that celiac disease is a prevalent,
chronic and costly disease representing a considerable burden to
health care systems, the individual and, by extension, their families.
Although data are available, this information has not been extrapo-
lated to the Canadian context in an accessible format. Written to
inform both medical professionals and patients, the present review will
increase awareness of celiac disease through a comprehensive over-
view of disease incidence and prevalence, and the Canadian implica-
tions for our health care system and socioeconomics.
METHODS
A systematic literature review was conducted to retrieve peer-
reviewed, scholarly literature written in English using the databases
PubMed, MEDLINE, EMBASE, and Scopus. The search term used
was “celiac disease”, with a specific focus on epidemiology and eco-
nomic studies from developed countries. Additional information was
retrieved from government sources and not-for-profit organizations.
INCIDENCE
In a study of newborns from Denver, Colorado (USA), who were
uniformly tested for celiac disease, the predicted incidence of celiac
disease potentially affecting the cohort by five years of age was one in
104 (0.9%) (1). European studies of pediatric disease suggest that some
countries may have incidence rates as high as one in 300 (2). In the
absence of any Canadian data, assuming a conservative 0.9% inci-
dence rate implies that there are 16,540 Canadian children younger
than five years of age potentially affected by celiac disease (3).
Delays in the diagnosis of celiac disease (and failure to comply with a
gluten-free diet) leads to complications later in life: chronic, nonspecific
gastrointestinal complaints; refractory iron-deficiency anemia; infertil-
ity; osteoporosis; intestinal lymphoma; and, possibly, the development
of other autoimmune diseases (eg, type 1 diabetes) (4,5).
PREVALENCE
The average prevalence of celiac disease in western countries is 1% of
the population according to serology studies (range 0.152% to 2.67%)
(6). Prevalence, determined by biopsies, is lower, with a range of
0.152% to 1.87%. In North America, the original prevalence rate was
estimated to be as low as 33 in 100,000 not-at-risk people. A recent
study provides good evidence for a higher prevalence of 949 cases in
100,000 or 1% (6). However, when considering the incidence rate to
be at least 0.9%, the 1% prevalence rate is likely to be much higher. By
modern standards, celiac disease is considered to be a common medical
condition in North America for both adults and children (5,6). In
2011, the Canadian Celiac Association had 28 affiliated chapters and
30 satellite groups (7).
Longitudinal data regarding the increasing prevalence of celiac
disease is available for Finland, where large cohorts (eg, 8000 partici-
pants) were specifically tested. From 1978 to 1980, the prevalence rate
was 1.05% and subsequently increased to 1.99% in 2000 to 2001 (8).
A second study conducted in 2010 found that the prevalence rate in
adults 30 to 64 years of age was as high as 2.4% (range 2.0% to 2.8%)
(9). The high prevalence of celiac disease in Finland is not mirrored in
other European countries such as Germany (0.3%) and Italy (0.7%)
(9). On average, celiac disease affects 1.0% of the European popula-
tion and it is not well understood why there are significant regional
variations.
REVIEW
©2012 Pulsus Group Inc. All rights reserved
RN Fedorak, CM Switzer, RJ Bridges. Canadian Digestive
Health Foundation Public Impact Series 4: Celiac disease in
Canada. Incidence, prevalence, and direct and indirect economic
impact. Can J Gastroenterol 2012;26(6):350-352.
The Canadian Digestive Health Foundation initiated a scientific pro-
gram to assess the incidence, prevalence, mortality and economic
impact of digestive disorders across Canada in 2009. The current arti-
cle presents the updated findings from the study concerning celiac
disease.
Key Words: Burden of disease; Canada; Celiac disease; Chronic disease;
Digestive disease; Epidemiology
Quatrième article de la série sur les répercussions
sur le public de la Fondation canadienne pour la
promotion de la santé digestive : l’incidence, la
prévalence et les conséquences économiques
directes et indirectes de la maladie cœliaque
En 2009, la Fondation canadienne pour la promotion de la santé diges-
tive a lancé un programme scientifique pour évaluer l’incidence, la
prévalence, la mortalité et les conséquences économiques des maladies
digestives au Canada. Le présent article expose les observations mises
à jour de l’étude sur la maladie cœliaque.
CDHF Public Impact Series 4: Celiac disease in Canada
Can J Gastroenterol Vol 26 No 6 June 2012 351
A cross-sectional study (n=1200) conducted in the United
Kingdom (UK) between 1999 and 2001 (10), found that the preva-
lence rates of celiac disease were higher in individuals with irritable
bowel syndrome (3.3%), iron-deficiency anemia (4.7%) or fatigue
(3.3%) compared with the primary care population (1%). Other popu-
lations considered to be at-risk for developing celiac disease are first-
degree relatives of celiac patients (20%), individuals with symptomatic
iron-deficiency anemia (9% to 14%) and those with osteoporosis (1%
to 3%) (6,10). Although a previous study found that type 1 diabetes
patients had a 3% to 6% increased prevalence of celiac disease com-
pared with the general population, a serology and biopsy study of
pediatric type 1 diabetic patients in British Columbia found a preva-
lence rate that was even higher (7.7%) (6,11). An American study of
a pediatric cohort diagnosed with celiac disease (2) found that several
patients had thyroiditis, short stature and Down syndrome; the centre
now routinely screens these at-risk patients.
Comparing two pediatric celiac disease studies conducted within
Canada, it appears that children nowadays are presenting with a
greater range of symptoms and signs of the disease and, potentially, at
a later age. A study conducted in Toronto (Ontario) in 1969 reported
an average age of diagnosis of 2.6 years compared with 4.8 years in the
2005 study (5). This latter onset of noticeable symptoms and signs of
celiac disease is also mirrored in an American study. In 153 Wisconsin
(USA) children diagnosed with celiac disease, the age at diagnosis was
5.32 years between 1986 and 1995, and 8.70 years for those diagnosed
in 1995 through to 2003 (2).
Although a preliminary indicator of celiac disease is a straight-
forward serum test, the realistic prevalence in Canadian society is
likely to be much lower for several reasons. First, the clinical symptoms
and signs of celiac disease are widespread, with significant variation
between patients and are often unrelated to the gut, such as eczema,
bone/joint pain, mouth ulcers and muscle cramps. Several common
complaints are only now being associated with celiac disease, such as
anemia, mood swings, constipation, extreme weakness and depression
(5). In fact, the presence of gastrointestinal symptoms and being
underweight, the traditional hallmarks of celiac disease, are usually
indicators of more severe disease in children (2,12). Second, the avail-
ability of less-expensive celiac disease screening tests was limited
within Canada in 2005 (5). Finally, physician and public awareness of
the disease has been increasing in the past decade but may still be a
barrier to prompt testing. The median time to diagnosis of celiac dis-
ease from the onset of symptoms is one year (range zero to 12 years)
(5). Even now, there is no medical practice guideline on this topic
available in the Canadian Journal of Gastroenterology, although celiac
disease guidelines do exist for celiac disease through the North
American Society for Pediatric Gastroenterology, Hepatology and
Nutrition.
MORTALITY
The average number of deaths attributed to celiac disease from
2000 through to 2007 was seven per year (Figure 1) (13).
ECONOMICS
Direct costs
Historically, celiac disease was not believed to be a common disease
within North America, and only the most persistent and ill patients
were diagnosed. Although the situation is changing, one-third of
Canadian families report having to see two or more pediatric phys-
icians before having their child diagnosed with celiac disease (5).
Assuming an average charge of CAD$50 for each visit, this delay in
diagnosis itself represents a cost of $400,000. Of concern are the results
from a longitudinal, pediatric UK study (n=5470) published in 2007
(14). Of the 1% of children who were positive for celiac disease, only
10% had been formally diagnosed by a physician. In combination, the
wide variety of nongastrointestinal symptoms and the known pro-
tracted delay in obtaining a diagnosis increase the socioeconomic
burden of disease because patients are at increased risk for developing
complications later in life: chronic nonspecific gastrointestinal com-
plaints; refractory iron-deficiency anemia; infertility; osteoporosis;
intestinal lymphoma; and, possibly, the development of other auto-
immune diseases (eg, type 1 diabetes) (4,5).
Annual check-ups are recommended to assess the nutritional status
and disease progression of the patient. The North American Society
for Pediatric Gastroenterology, Hepatology and Nutrition, which
includes Canadian physicians, also recommends annual serology tests
for tissue transglutaminase antibody (tTG) (15). Interestingly, mon-
itoring the body mass index of patients is an important consideration
when studies report that patients gain weight after switching to a glu-
ten-free diet. For example, in an American study (n=188), after two
years on a gluten-free diet, 81% of patients experienced weight gain,
4% had no change and 15% had weight loss (12). For patients who
were overweight at baseline, 82% gained additional weight.
From an author response regarding serological tests for celiac dis-
ease, the cost for a single antibody test was US$50 while the entire
panel (immunoglobulin [Ig]A tTG, IgG tTG, endomysial IgA anti-
bodies (EMA) and IgA/G antigliadin antibodies) was US$250 in 2006
(16). However, the article stated that it was more cost effective to
begin screening with IgA tTG or IgA EMA, then proceed if only these
were positive. A Finnish firm has a home celiac disease testing kit
(Biocard Celiac Test, ANIbiotech, Finland) that was approved for sale
in Canada (CAD$50) in 2009 (17).
An important consideration of the direct costs of celiac disease is
that patients have a 30% increased risk for developing a malignancy
compared with the general population; the most common is non-
Hodgkin’s lymphoma (4). However, it should be noted that this value
may be inflated due to the under-recognition of ‘silent’ or asymptom-
atic celiac disease cases, which are only identified in large-scale
screening studies (4). Typically, the health care costs associated with
non-Hodgkin’s lymphoma are $10,650 per patient per year (18).
The scholarly literature is replete with articles describing or calling
for cost-effective, population-wide, celiac disease screening. General
population testing strategies or targeting high-risk individuals are also
being debated. Population screening in the community of six-year-old
children by primary care nurses was considered to be a viable approach
for identifying individuals who were not identified in the clinical
environment. The inexpensive cost, ease of use and rapid results
afforded by the Biocard kit makes such an approach feasible (19).
Indirect costs
Presently, the recommended treatment for celiac disease is for the
patient to adhere to a gluten-free diet throughout his or her life.
This adds to the individual’s food costs and can be inconvenient
(20). A recent Canadian study assessed the prices of 56 gluten-free
products with similar gluten-containing products (21). The average
Figure 1) Canadian deaths primarily attributed to celiac disease
Fedorak et al
Can J Gastroenterol Vol 26 No 6 June 2012352
costs of the gluten-free items were 242% more expensive than their
gluten-containing counterparts. If the average weekly food cost for a
family of four living in Toronto was $185.44, and assuming that it is
easier to cook for the entire family instead of a single person, the food
bill would be $448.76 per week (22).
More than one-half of the surveyed members of the Canadian
Celiac Association reported extreme difficulty finding gluten-free
foods and often encountered poorly labelled food items (5). When
asked to rate the two most important areas that would improve a fam-
ilies’ quality of life, better labelling of gluten-containing and gluten-
free products was rated the highest at 63% (5,19). Dietary restrictions
negatively influenced family activities such as travel or dining out.
Fortunately, Health Canada has proposed regulatory amendments to
food allergen labelling to encourage manufacturers to clearly state the
sourse of gluten in foodstuffs (eg, barley, oats, rye, triticale, or wheat
including kamut or spelt) (23).
Celiac disease patients can claim gluten-free foods as a medical
expense. The necessary documents required from the physician as
proof of celiac disease are associated with a fee. However, these forms
are required to be completed only once. For tax filing, the cost of the
gluten-free food and the comparable gluten-containing product need
to be inventoried and accompanied by receipts. The difference
between the two totals represents the allowable medical expense.
However, if only one person in the family has celiac disease, and the
foodstuffs are purchased for family dinners, only the portion consumed
by the patient is eligible. The medical expenses are tallied with other
personal deductions and the final amount claimed depends on the
claimant’s annual income (24). Reports from celiac disease patients
from an online forum indicate that the process is arduous and requires
the paid assistance of an accountant. The deduction amount is vari-
able, but for one individual it was $600, which is a trivial amount
compared with $60 spent a week on dried blueberries as a gluten-free
‘snack’ (25).
The side effects of celiac disease, such as diarrhea, headaches,
fatigue, bloating and abdominal discomfort (6), likely increase an
employee’s absence from work. However, no studies have been com-
pleted to provide a financial impact of celiac disease in the
workforce.
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Full-text available
  • Sep 2020
The prevalence of digestive disorders has increased globally, as countries have adopted a more “Westernized” diet pattern. A Western diet, characterized as high in fat and refined carbohydrates, can also be defined as a product of increased technology and industrialization. Modern farmers rely on agrochemicals to meet the needs of a growing population, and these chemicals have shifted the Western diet’s chemical composition. While the number of individuals choosing to live a wheat-free lifestyle without a celiac disease diagnosis has increased, clinical trials have shown that gluten from wheat is not responsible for causing symptoms in healthy individuals suggesting that something else is inducing symptoms. The herbicide, glyphosate, is applied to wheat crops before harvest to encourage ripening resulting in higher glyphosate residues in commercial wheat products within North America. Glyphosate inhibits the shikimate pathway, a pathway exclusive to plants and bacteria. Glyphosate’s effect on dysbiosis was not considered when making safety recommendations. Here, we evaluate the literature surrounding glyphosate’s effects on the gut microbiome and conclude that glyphosate residues on food could cause dysbiosis, given that opportunistic pathogens are more resistant to glyphosate compared to commensal bacteria. However, research on glyphosate’s effects on the microbiome suffers from numerous methodological weaknesses, and these limitations make it impossible to draw any definitive conclusions regarding glyphosate’s influence on health through alterations in the gut microbiome. In this review, we critically evaluate the evidence currently known and discuss recommendations for future studies.
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... It is possible that inadequate consumption of whole grains and the associated increase in economic burden could be due to the rise of gluten-free and low-carbohydrate diets in the past decade [45,46]. Gluten is a protein found in a variety of grains, including wheat, rye, and barley. ...
... Some individuals have an intolerance to gluten and individuals with Celiac disease have an autoimmune reaction and can experience severe side effects if they consume the protein. In Canada, approximately 1% of the population has Celiac disease and an additional 1-6% report gluten sensitivity, however the true prevalence is difficult to establish as non-Celiac gluten sensitivity is often self-diagnosed [45,47]. An estimated 25% of American consumers reported consuming gluten-free food in 2015, and it is likely Canadian consumption of gluten free food was similar [48]. ...
Economic Burden of Not Complying with Canadian Food Recommendations in 2018
Article
Full-text available
  • Oct 2019
Poor diet has been identified as a major cause of chronic disease. In this study we estimated the 2018 economic burden of chronic disease attributable to not complying with Canadian food recommendations. We retrieved the chronic disease risk estimates for intakes of both protective (fruit, vegetables, milk, whole grains, nuts and seeds) and harmful foods (sugar-sweetened beverages, processed meat, red meat) from the Global Burden of Disease Study, and food intakes from the 2015 Canadian Community Health Survey 24-hour dietary recalls (n = 19,797). Population attributable fractions (PAFs) were calculated for all food–chronic disease combinations, and mathematically adjusted to estimate the 2018 annual direct (hospital, physician, drug) and indirect (human capital approach) economic burden for each disease. Not meeting the eight food recommendations was estimated to be responsible for CAD15.8billion/yearindirect(CAD15.8 billion/year in direct (CAD5.9 billion) and indirect (CAD9.9billion)costs.TheeconomicburdenofCanadiansunder−consuminghealthfulfoodsexceededtheburdenofoverconsumptionofharmfulfoods(CAD9.9 billion) costs. The economic burden of Canadians under-consuming healthful foods exceeded the burden of overconsumption of harmful foods (CAD12.5 billion vs. CAD$3.3 billion). Our findings suggest poor diet represents a substantial economic burden in Canada. Interventions may be more effective if they are wide in focus and promote decreased consumption of harmful foods alongside increased consumption of healthful foods, with emphasis on whole grains and nuts and seeds.
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... Celiac disease (CD) is a permanent intolerance to ingested gluten, occurring in genetically predisposed individuals at a rate of approximately 1% worldwide [1][2][3]. The rate of diagnosis, particularly for children, is increasing [2][3][4][5], yet many experts believe the disease remains under diagnosed. ...
... Celiac disease (CD) is a permanent intolerance to ingested gluten, occurring in genetically predisposed individuals at a rate of approximately 1% worldwide [1][2][3]. The rate of diagnosis, particularly for children, is increasing [2][3][4][5], yet many experts believe the disease remains under diagnosed. In CD, the presence of gluten causes intestinal accumulation of intraepithelial lymphocytes followed by mucosal villous atrophy with crypt hyperplasia [6]. ...
AGY, a Novel Egg Yolk-Derived Anti-gliadin Antibody, Is Safe for Patients with Celiac Disease
Article
Full-text available
  • May 2017
  • DIGEST DIS SCI
Background Celiac disease (CD) is a gluten-triggered autoimmune disorder of the small intestine. A lifelong gluten-free diet (GFD) is the only approved treatment; however, strict adherence is difficult and many suffer from inadvertent gluten exposure. Oral egg yolk anti-gliadin antibody (AGY) is a novel treatment to neutralize gluten and may improve the efficacy of the GFD. AimsTo determine the safety, tolerability, and potential efficacy of AGY in patients with CD. Methods This 6-week, open-label, single-arm study was conducted in adults with biopsy-proven CD on a GFD. Safety measures included adverse events, physical examination, and clinical laboratory tests. Additional measures included a daily Celiac Symptom Index, Health-Related Quality of life, anti-tissue transglutaminase and anti-gliadin IgA/IgG, and lactulose/mannitol excretion ratio (LMER). A 2-week run-in period to assess questionnaire compliance and acceptability of baseline safety laboratory results was followed by a 4-week treatment period with two AGY capsules taken before meals. ResultsTen patients completed the study (mean age 43.4 years, nine female). All followed a GFD for at least 6 months (mean 5 years). No safety concerns were identified. Most patients had fewer celiac symptoms (especially tiredness, headache, and bloating), improved quality of life, lowered antibodies, and lowered LMER when taking AGY compared to the run-in period. Conclusion In our cohort, AGY was safe and potentially associated with improved CD-related outcome measures in patients on a GFD. A larger study powered for further safety and efficacy evaluation is planned.
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... The major problem related to this disease are the undiagnosed cases, since they can present atypical or no symptoms at all. It is estimated that 83% of celiac patients are not conscious of their disease [7], a percentage that increases up to 90% in pediatric patients [8], a phenomenon known as the "celiac iceberg" [9]. ...
Sourdough Biotechnology Applied to Gluten-Free Baked Goods: Rescuing the Tradition
Article
Full-text available
  • Jun 2021
Recent studies suggest that the beneficial properties provided by sourdough fermentation may be translated to the development of new GF products that could improve their technological and nutritional properties. The main objective of this manuscript is to review the current evidence regarding the elaboration of GF baked goods, and to present the latest knowledge about the so-called sourdough biotechnology. A bibliographic search of articles published in the last 12 years has been carried out. It is common to use additives, such as hydrocolloids, proteins, enzymes, and emulsifiers, to technologically improve GF products. Sourdough is a mixture of flour and water fermented by an ecosystem of lactic acid bacteria (LAB) and yeasts that provide technological and nutritional improvements to the bakery products. LAB-synthesized biopolymers can mimic gluten molecules. Sourdough biotechnology is an ecological and cost-effective technology with great potential in the field of GF products. Further research is necessary to optimize the process and select species of microorganisms robust enough to be competitive in any circumstance.
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... Two studies suggest that more gluten-free food is avail- able in supermarkets than in smaller shops, and that when they are present in small shops, gluten-free foods are signifi- cantly more expensive compared to supermarkets [43]. Most people with CD reported that it was difficult to find gluten- free foods, thus exacerbating their dietary restrictions and sometimes negatively affecting their prospects or desire to travel (for leisure or work) and to participate to social meet- ings [44]. The cost and availability of gluten-free foods were the cause of most of the complaints about economic cost among individuals with CD and their families [45] which suggests that governmental health authorities should con- sider the possibility of providing economic support to af- fected individuals, especially those with low incomes or who belong to vulnerable social classes. ...
Quality of Life in People with Coeliac Disease: Psychological and Socio- Economic Aspects
Article
  • Jul 2018
Background and objective: Coeliac disease (CD) is a chronic autoimmune intestinal disorder characterized by intolerance to gluten, a protein contained in certain cereals. The main physiopathological basis of CD is the progressive destruction of intestinal villi caused by gluten ingestion by genetically-susceptible individuals. Patients who receive a diagnosis of CD must make significant changes to their daily habits and this can affect their quality of life. The objective of this review is to summarize the evidence regarding the economic, physical and social limitations which can affect quality of life in patients with CD. Results: Different factors such as physical changes, psychological effects, interpersonal relationships, emotions and economic difficulties can affect the quality of life of these patients. Observations suggest that, in general, women with CD experience a greater deterioration in their quality of life than men. Lastly, complications in daily life are also associated with the reduced availability of gluten-free products which also usually cost more than standard products. Conclusions: Continuous health education and care regarding socio-economic issues should be continuously developed and provided to people with CD.
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... 5,6 The national case load, according to the Canadian Digestive Health Foundation, lies between 110,000 and 330,000. 7 This range represents the disparity between the population currently labelled with CD (and managed accordingly) and the proportion that remains undiagnosed. Rates of CD have roughly doubled in the Western world in the last 25 years. ...
Is ‘Gluten-Free’ Gluten-Free? Celiac Disease in Canada in 2015
Article
  • Apr 2015
Our understanding of celiac disease (CD) has improved dramatically in recent years. Once considered a rare childhood malabsorption syndrome, we now recognize CD as a complex enteropathy mediated by immune, genetic, and environmental factors. CD affects a large proportion of the Canadian population, and its disease burden is substantial in terms of proven reduction in quality of life. Symptom recognition and referral to a gastroenterologist for diagnosis are crucial. As CD is caused by intolerance to gluten, the only effective treatment is strict gluten avoidance. Canadian food product guidelines have only recently become sufficiently rigid, incorporating newer evidence that suggests lower limits of gluten tolerability in this patient population than previously thought.
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... Celiac disease (CeD) is an immune-inflammatory response to ingestion of gluten occurring in genetically predisposed individuals [1] and affecting approximately 1 % of the population in Western countries [2]. While CeD causes small intestinal mucosal injury with resulting gastrointestinal and malabsorption symptoms such as abdominal pain, bloating, diarrhea, and weight loss [3], its consequences may also include at least 20 systemic disorders [4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23]. ...
Direct Costs in Patients with Celiac Disease in the USA: A Retrospective Claims Analysis
Article
Full-text available
  • Oct 2016
  • DIGEST DIS SCI
Background Celiac disease (CeD) is an autoimmune disease triggered by gluten ingestion. Aim We assessed total direct costs burden associated with CeD in patients with CeD versus patients without CeD using administrative claims data. Methods Patients with CeD (cases) with ≥1 occurrences of CeD diagnosis were selected at a randomly chosen date (index date) from the OptumHealth Reporting and Insights database from 01/01/1998 through 03/31/2013. Cases were continuously enrolled throughout baseline (1 year before index date) and study (1 year after index date) periods. Cases were categorized as full remission and partial remission and matched 1:1 based on age, sex, region, index date, company, and employment status. Total all-cause and CeD-related costs were calculated. Results A total of 12,187 cases were matched with an equal number of controls. Mean total all-cause costs were 12,217incasesversus12,217 in cases versus 4935 in controls (P < 0.0001). In full remission (N = 10,181 [83.5 %]) and partial remission (N = 2006 [16.5 %]) cases, mean total all-cause direct costs (cases versus controls) were 11,038versus11,038 versus 4962 and 18,206versus18,206 versus 4796, respectively. All-cause medical costs (9839forallcases,9839 for all cases, 8723 for full remission cases, 15,499forpartialremissioncases)accountedforthemajorityofall−causetotalcostsandincludedoutpatientcosts(15,499 for partial remission cases) accounted for the majority of all-cause total costs and included outpatient costs (6675; 6456;and6456; and 7785, respectively) and hospitalizations (2776; 1963; and $6906, respectively). CeD-related medical costs were 13 and 27 % of all-cause medical costs for all cases and partial remission cases, respectively. Conclusions Patients with CeD and partial remission of CeD incurred significantly higher (2.5 and 3.8 times) total all-cause costs compared with matched controls.
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Epidemiology and burden of gluten-related disorders
Chapter
  • Jan 2022
Gluten-related disorders (GRDs) are the common diseases of the gastrointestinal tract, with a global prevalence between 1% and 1.4%. Its dominated disease is celiac disease (CD), which its incidence is increasing in recent years. CD is associated with autoimmune diseases, including type 1 diabetes, thyroiditis, inflammatory bowel diseases, and autoimmune liver disease. In addition, CD may increase the chance of some malignancies and is considered to be associated with the risk of coronary heart disease and cardiovascular disease. Besides, women with unexplained infertility or recurrent miscarriage are significantly at the higher risk of CD. There is no evidence to recommend about the gluten introduction or optimal breastfeeding time and duration in order to prevent CD in children. CD patients face substantial expense and economic burden not only for buying gluten-free products but also for direct and indirect medical costs. Although screening for CD with serological tests is not recommended for the general population, it should be considered in high-risk groups. Nonceliac gluten sensitivity, wheat allergy, dermatitis herpetiformis, and gluten ataxia are other GRDs with similar symptoms that may be confused with CD and their prevalence reports are heterogeneous.
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High Prevalence of Celiac Disease in Patients with Type 1 Diabetes Detected by Antibodies to Endomysium and Tissue Transglutaminase
Article
Full-text available
  • Jun 2001
  • CAN J GASTROENTEROL
To establish the prevalence of celiac disease (CD) in children with type 1 diabetes in British Columbia. Two hundred thirty-three children with type 1 diabetes were prospectively screened for CD using blind testing with the current 'gold standard', immunoglobulin A endomysium antibody (EmA), and the novel immunoglobulin A tissue transglutaminase (tTG) antibody. Those children with positive results were offered small bowel biopsy; a gluten-free diet was recommended if CD was confirmed. Nineteen children were positive for EmA and had an elevated tTG level. One patient from this group was already known to have CD, and the other 18 patients consented to biopsy. One biopsy was normal, three biopsies demonstrated elevated intraepithelial lymphocyte counts with normal morphology and 14 biopsies had morphological changes consistent with CD. Growth parameters were normal in all patients, and nine of 19 children who were positive for EmA were asymptomatic. Seven patients had mild elevation of tTG levels alone. Two children from this latter group had normal biopsies, and five declined biopsy. At least 14 new cases of CD were detected in addition to four known cases, yielding an overall biopsy-confirmed prevalence of CD of 7.7% (18 of 233). The present study confirms that CD is as prevalent in the pediatric type 1 diabetic population in British Columbia as it is in Europe. Serological screening of these children is important because many children have no symptoms or signs suggestive of CD. This study suggests that tTG serology may also be useful in monitoring response and compliance with a gluten-free diet.
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The prevalence of celiac disease in Europe: Results of a centralized, international mass screening project
Article
Although the prevalence of celiac disease (CD) has been extensively investigated in recent years, an accurate estimate of CD frequency in the European population is still lacking. The aims of this study were: 1) to establish accurately the prevalence of CD in a large sample of the European population (Finland, Germany, Italy, and UK), including both children and adults; and 2) to investigate whether the prevalence of CD significantly varies between different areas of the European continent. Samples were drawn from the four populations. All 29,212 participants were tested for CD by tissue transglutaminase (tTG) antibody test. Positive and border-line findings were further tested for serum endomysial antibodies (EMA). All serological determinations were centrally performed. Small-bowel biopsies were recommended to autoantibody-positive individuals. Previously diagnosed cases were identified. The overall CD prevalence (previously diagnosed plus anti-tTG and EMA positives) was 1.0% (95% CI 0.9-1.1). In subjects aged 30-64 years CD prevalence was 2.4% in Finland (2.0-2.8), 0.3% in Germany (0.1-0.4), and 0.7% in Italy (0.4-1.0). Sixty-eight percent of antibody-positive individuals showed small-bowel mucosal changes typical for CD (Marsh II/III lesion). CD is common in Europe. CD prevalence shows large unexplained differences in adult age across different European countries.
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Gluten-Free and Regular Foods: A Cost Comparison
Article
  • Feb 2008
The treatment of celiac disease is a strict gluten-free diet for life. This diet is assumed to be more expensive, although no studies confirm this assumption. In the current study, the prices of gluten-free foods and regular (gluten-containing) foods were compared to determine if and to what extent gluten-free products are more expensive. Prices were compared for all food products labelled "gluten-free" and comparable gluten-containing food items in the same group available at two large-chain general grocery stores. The unit cost of each food, calculated as the price in dollars per 100 grams of each product, was calculated for purposes of comparison. All 56 gluten-free products were more expensive than regular products. The mean (+/- standard deviation) unit price for gluten-free products was 1.71(+/−0.93)comparedwith1.71 (+/- 0.93) compared with 0.61 (+/- 0.38) for regular products (p<0.0001). On average, gluten-free products were 242% more expensive than regular products (+/- 212; range, 5% to 1,000%). All the commercially available products labelled gluten-free were significantly more expensive than comparable products. This information will be useful to dietitians who counsel individuals and families with celiac disease, and to celiac advocacy groups for lobbying the government about financial compensation.
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A primary care cross-sectional study of undiagnosed adult coeliac disease
Article
  • May 2003
  • EUR J GASTROEN HEPAT
To establish the prevalence of coeliac disease in the general population and in specific conditions, such as irritable bowel syndrome, iron deficiency anaemia, fatigue and other coeliac-related conditions. Primary-care-based cross-sectional study using immunoglobulins, IgA/IgG antigliadin antibodies and endomysial antibodies to initially recognize coeliac disease. A total of 1200 volunteers were recruited from January 1999 to June 2001 from five general practices in South Yorkshire, UK. Any participant with a positive IgA antigliadin antibody, positive endomysial antibody, or only IgG antigliadin antibody in the presence of IgA deficiency was offered a small-bowel biopsy to confirm the diagnosis of coeliac disease. Twelve new cases of coeliac disease were diagnosed from 1200 samples. The prevalence of coeliac disease in this primary care population sample is 1% (95% CI 0.4-1.3%). The prevalence of coeliac disease was 3.3% (4/123) in participants with irritable bowel syndrome, 4.7% (3/64) in participants with iron deficiency anaemia, and 3.3% (3/92) in participants with fatigue. This study describes the prevalence of undiagnosed adult coeliac disease in primary care patients with irritable bowel syndrome, iron deficiency anaemia and fatigue. Underdiagnosis of coeliac disease is common in primary care. A case-finding approach would avoid delays in diagnosis and the associated morbidity or potential complications of coeliac disease. A low threshold for serological screening of patients with coeliac-associated symptoms or conditions would be an optimal strategy.
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A prospective study of the incidence of childhood celiac disease
Article
  • Oct 2003
  • J Pediatr
To estimate the frequency of celiac disease (CD) in children in the general population of Denver, Colorado. From 22,346 newborns characterized as expressing 0, 1, or 2 HLA-DR3(DQB1*0201) alleles, 987 were selected for a prospective stratified cohort study. Participants were followed for as long as 7 years with serial testing for serum IgA anti-transglutaminase antibodies and for evidence of CD (intestinal mucosal changes or persistent seropositivity). Of 40 children with at least one positive serologic test, 19 had evidence of CD (10 by biopsy, 9 by persistent seropositivity). Those expressing 0, 1, or 2 HLA-DR3 alleles had, respectively, 0.3% (95% CI, 0.0-2.7), 3.4% (3.0-11.7), and 3.2% (1.0-11.0) risk for evidence of CD by age 5 years. The adjusted risk estimate for evidence of CD by age 5 years for the Denver general population was 0.9% (0.4-2.0), or 1 in 104 (1:49-221). After adjusting for number of HLA-DR3 alleles expressed, risk was higher in females: RR=3.34 (1.00-10.9, P=.048). Evidence of CD was not observed before age 2.6 years. Celiac disease may affect 0.9% of Denver children by 5 years of age. Children positive for the HLA-DR3 allele and females appear to be at increased risk.
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Guideline for the Diagnosis and Treatment of Celiac Disease in Children: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
Article
  • Feb 2005
Celiac disease is an immune-mediated enteropathy caused by a permanent sensitivity to gluten in genetically susceptible individuals. It occurs in children and adolescents with gastrointestinal symptoms, dermatitis herpetiformis, dental enamel defects, osteoporosis, short stature, delayed puberty and persistent iron deficiency anemia and in asymptomatic individuals with type 1 diabetes, Down syndrome, Turner syndrome, Williams syndrome, selective immunoglobulin (Ig)A deficiency and first degree relatives of individuals with celiac disease. The Celiac Disease Guideline Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition has formulated a clinical practice guideline for the diagnosis and treatment of pediatric celiac disease based on an integration of a systematic review of the medical literature combined with expert opinion. The Committee examined the indications for testing, the value of serological tests, human leukocyte antigen (HLA) typing and histopathology and the treatment and monitoring of children with celiac disease. It is recommended that children and adolescents with symptoms of celiac disease or an increased risk for celiac disease have a blood test for antibody to tissue transglutaminase (TTG), that those with an elevated TTG be referred to a pediatric gastroenterologist for an intestinal biopsy and that those with the characteristics of celiac disease on intestinal histopathology be treated with a strict gluten-free diet. This document represents the official recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition on the diagnosis and treatment of celiac disease in children and adolescents.
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The prevalence of celiac disease in average-risk and at-risk Western European populations: A systematic review
Article
  • May 2005
  • GASTROENTEROLOGY
Until recently, celiac disease (CD) was felt to be a rare disease in the United States. The aim of this study was to conduct a systematic review of the prevalence of CD in general Western populations and in populations at high risk for CD. Standard systematic review methodology was used. A literature search was conducted in MEDLINE (1966 to October 2003) and EMBASE (1974 to December 2003) databases. Qualitative and quantitative prevalence estimates were produced after assessing study heterogeneity. The prevalence of CD in general Western populations is close to 1% and is somewhat higher in certain Western European populations. The prevalence of CD in populations at risk for CD is as follows: 3%-6% in type 1 diabetic patients, up to 20% in first-degree relatives, 10%-15% in symptomatic iron-deficiency anemia (IDA), 3%-6% in asymptomatic IDA, and 1%-3% in osteoporosis. The prevalence of CD in patients suspected of having CD varied depending on the reasons for suspecting CD and on whether the study was conducted in a referral center. In general, the prevalence ranged from 5% to 15%, but was up to 50% in symptomatic patients evaluated in a tertiary referral center. CD is a common medical condition. The prevalence is higher still in high-risk groups. Clinicians in a variety of specialties should have a high index of suspicion for the diagnosis of CD and in particular need to pay close attention to the identified high-risk groups.
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Celiac Disease: Evaluation of the Diagnosis and Dietary Compliance in Canadian Children
Article
We sought to characterize the clinical features at presentation as well as the associated disorders, family history, and evaluation of compliance with a gluten-free diet in children with celiac disease from across Canada. All members (n = 5240) of the Canadian Celiac Association were surveyed with a questionnaire. Of the 2849 respondents with biopsy-confirmed celiac disease, 168 who were < 16 years old provided the data reported here. The mean age when surveyed was 9.1 +/- 4.1 years, and 58% were female. Median age at diagnosis was 3.0 years with a range of 1 to 15 years. Presenting symptoms included abdominal pain (90%), weight loss (71%), diarrhea (65%), weakness (64%), nausea/vomiting (53%), anemia (40%), mood swings (37%), and constipation (30%). Almost one third of families consulted > or = 2 pediatricians before confirmation of the diagnosis. Before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%). A serological test was performed to screen for celiac disease in 70% of those in this population. Eight percent had either type 1 diabetes mellitus or a first-degree relative with celiac disease. Almost all respondents (95%) reported strict adherence to a gluten-free diet, and 89% noted improved health. Reactions after accidental gluten ingestion developed in 54% of the children between 0.5 and 60 hours after ingestion with a median of 2.0 hours. Reactions included abdominal discomfort (87%), diarrhea (64%), bloating (57%), fatigue (37%), headache (24%), and constipation (8%), and most displayed > 1 symptom. Although most adjusted well to their disease and diet, 10% to 20% reported major disruptions in lifestyle. Twenty-three percent felt angry all or most of the time about following a gluten-free diet. Only 15% avoided traveling all or most of the time, and during travel, 83% brought gluten-free food with them all of the time. More than half of the families avoided restaurants all or most of the time. Twenty-eight percent of the respondents found it extremely difficult to locate stores with gluten-free foods, and 27% reported extreme difficulty in finding gluten-free foods or determining if foods were free of gluten. Sixty-three percent of the respondents felt that the information supplied by the Canadian Celiac Association was excellent. Gastroenterologists provided excellent information to 44%, dietitians to 36%, and the family physician to 11.5%. When asked to select 2 items that would improve their quality of life, better labeling of gluten-containing ingredients was selected by 63%, more gluten-free foods in the supermarket by 49%, gluten-free choices on restaurant menus by 49%, earlier diagnosis of celiac disease by 34%, and better dietary counseling by 7%. In Canada, children with celiac disease present at all ages with a variety of symptoms and associated conditions. Delays in diagnosis are common. Most children are compliant with a gluten-free diet. A minority of these children experience difficulties in modifying their lifestyles, and gluten-free foods remain difficult to obtain.
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Overweight in Celiac Disease: Prevalence, Clinical Characteristics, and Effect of a Gluten-Free Diet
Article
  • Nov 2006
It is well established that a minority of celiac patients present with "classic" symptoms due to malabsorption. However, few studies have focussed on the distribution of body mass index (BMI) in celiac populations and its relationship to clinical characteristics, or on its response to treatment. We reviewed BMI measurements and other clinical and pathological characteristics from a database of 371 celiac patients diagnosed over a 10-yr period and seen by a single gastroenterologist. To assess response to gluten exclusion, we compared BMI at diagnosis and after 2 yr treatment in patients with serological support for dietary compliance. Mean BMI was 24.6 kg/m2 (range 16.3-43.5). Seventeen patients (5%) were underweight (BMI < 18.5), 211 (57%) were normal, and 143 (39%) were overweight (BMI > or = 25), including 48 (13% of all patients) in the obese range (BMI > or = 30.0). There was a significant association between low BMI and female gender, history of diarrhea, reduced hemoglobin concentration, reduced bone mineral density (BMD), osteoporosis, and higher grades (subtotal/total) of villous atrophy. Of patients compliant with a gluten-free diet, 81% had gained weight after 2 yr, including 82% of initially overweight patients. Few celiac patients are underweight at diagnosis and a large minority is overweight; these are less likely to present with classical features of diarrhea and reduced hemoglobin. Failed or delayed diagnosis of celiac disease may reflect lack of awareness of this large subgroup. The increase in weight of already overweight patients after dietary gluten exclusion is a potential cause of morbidity, and the gluten-free diet as conventionally prescribed needs to be modified accordingly.
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