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Here is the abstract of the study below. I have also summarized the
main points of this study.
CD was found in 1:133 of the general population (1:105 adults and 1:320
children) which translates into 1.5 million Americans.
Incidence of CD in the at-risk groups were 1:22 for 1st degree relatives
and 1:39 in 2nd degree relatives and 1:56 in symptomatic patients
The prevalence of CD was as high in 1st and 2nd degree relatives without
symptoms as in relatives with symptoms. There was a high prevalence of
CD in people with common disorders such as type 1 diabetes,anemia,
arthritis, osteoporosis, infertility, and Down syndrome, even in the
absence of gastrointestinal symptoms.
Serological testing using AGA and EMA antibodies were measured in all
subjects. In positive EMA (endomysial antibody) subjects, human tissue
transglutaminase IgA antibodies and HLA DQ2 and DQ8 haplotypes were
determined. Intestinal biopsy was recommended and performed whenever
possible in all EMA postive subjects.
CD is considered to be the most underdiagnosed common disease today and
the average length of time between onset of symptoms and confirmation of
CD diagnosis is 11 years! This delay in diagnosis is due to several factors:
1. Most MD's and RD's were taught that it was a rare diseases and that
patients presented only with classical gastrointestinal symptoms. (It is
now known that many patients do not present with any GI symptoms or are
asymptomatic in spite of gluten sensitivity). As a result, they are not
rountinely testing for CD.
2. The anti-gliadin antibody(AGA) serological test is often used but it
is not as sensitive and specific as the EMA and TTG antibody tests.
3. Endoscopy samples may miss active patches of the disesase in the
specific samples that are drawn.
4. Pathologists may not recognize early features of CD and only report a
positive diagnosis with total villous atrophy. (Many CD patients present
with various degrees of partial villous atrophy)
Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the
United States
A Large Multicenter Study
Alessio Fasano, MD; Irene Berti, MD; Tania Gerarduzzi, MD; Tarcisio Not,
MD; Richard B. Colletti, MD ; Sandro Drago, MS; Yoram Elitsur, MD; Peter
H. R. Green, MD; Stefano Guandalini, MD; Ivor D. Hill, MD; Michelle
Pietzak, MD; Alessandro Ventura, MD; Mary Thorpe, MS; Debbie Kryszak,
BS; Fabiola Fornaroli, MD; Steven S. Wasserman, PhD; Joseph A. Murray,
MD; Karoly Horvath, MD, PhD
Arch Intern Med. 2003;163:286-292.
Background Celiac disease (CD) is an immune-mediated
enteropathiccondition triggered in genetically susceptible individuals
bythe ingestion of gluten. Although common in Europe, CD is thoughtto be
rare in the United States, where there are no large epidemiologicstudies
of its prevalence. The aim of this study was to determinethe prevalence
of CD in at-risk and not-at-risk groups in theUnited States.
Methods Serum antigliadin antibodies and anti-endomysialantibodies
(EMA) were measured. In EMA-positive subjects, humantissue
transglutaminase IgA antibodies and CD-associated humanleukocyte antigen
DQ2/DQ8 haplotypes were determined. Intestinalbiopsy was recommended and
performed whenever possible for allEMA-positive subjects. A total of
13 145 subjects werescreened: 4508 first-degree and 1275 second-degree
relativesof patients with biopsy-proven CD, 3236 symptomatic
patients(with either gastrointestinal symptoms or a disorder
associatedwith CD), and 4126 not-at-risk individuals.
Results In at-risk groups, the prevalence of CD was 1:22in first-degree
relatives, 1:39 in second-degree relatives,and 1:56 in symptomatic
patients. The overall prevalence ofCD in not-at-risk groups was 1:133.
All the EMA-positive subjectswho underwent intestinal biopsy had lesions
consistent withCD.
Conclusions Our results suggest that CD occurs frequentlynot only in
patients with gastrointestinal symptoms, but alsoin first- and
second-degree relatives and patients with numerouscommon disorders even
in the absence of gastrointestinal symptoms.The prevalence of CD in
symptomatic patients and not-at-risksubjects was similar to that
reported in Europe. Celiac disease appears to be a more common but
neglected disorder than hasgenerally been recognized in the United States.
From the Center for Celiac Research (Drs Fasano, Fornaroli, and
Horvath, Mr Drago, and Mss Thorpe and Kryszak), Division of Pediatric
Gastroenterology and Nutrition (Drs Fasano and Horvath, Mr Drago, and
Mss Thorpe and Kryszak), and Center for Vaccine Development (Dr
Wasserman), University of Maryland School of Medicine, Baltimore;
Istituto per l'Infanzia Burlo Garofalo, Trieste, Italy (Drs Berti,
Gerarduzzi, Not, and Ventura); Division of Pediatric Gastroenterology
and Nutrition, University of Vermont, Burlington (Dr Colletti); Division
of Pediatric Gastroenterology and Nutrition, Marshall University,
Huntington, WV (Dr Elitsur); Division of Gastroenterology, Department of
Medicine, Columbia University College of Physicians and Surgeons, New
York, NY (Dr Green); Section of Pediatric Gastroenterology, Hepatology,
and Nutrition, and University of Chicago Celiac Disease Program,
University of Chicago, Chicago, Ill (Dr Guandalini); Division of
Pediatric Gastroenterology and Nutrition, Wake Forest University School
of Medicine, Winston-Salem, NC (Dr Hill); Division of Pediatric
Gastroenterology and Nutrition, Children's Hospital Los Angeles,
University of Southern California, Keck School of Medicine, Los Angeles
(Dr Pietzak); and Mayo Clinic, Rochester, Minn (Dr Murray).
Shelley Case, B. Sc., RD
Case Nutrition Consulting, www.glutenfreediet.ca
<http://www.glutenfreediet.ca>
Author: Gluten Free Diet: A Comprehensive Resource Guide
Co-Author: Celiac Section, Manual of Clinical Dietetics, American
Dietetic Association and Dietitians of Canada
Medical Advisory Board: Celiac Disease Foundation, Gluten Intolerance
Group, Canadian Celiac Association
Dietitian Advisory Board: Gluten-Free Living Magazine
EMail: [log in to unmask] <mailto:[log in to unmask]>
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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