Prevalence of CD

[kickingfrog]

EU

British Study Suggests 1 in 80 are Celiac


The following came form Maelstrom listserv
Posted Sept. 10, 2002
“The largest investigation into the prevalence of
undiagnosed celiac condition in the general
population is taking place in Europe with 4 million
euros of EC funding. So far over 18000 blood
samples have been tested and the results suggest
that 1 in every 80 people may show some adverse
reaction to gluten, and so benefit from gluten-free
diet. This figure is very much greater than the
number at present medically diagnoses, so there
are a lot of people out there suffering
unnecessarily from the effects of gluten in their
diet.”

Coeliac EU Cluster Scientific Programme
Date: 07-08-02 10:39
Author: Peter



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Should all children be screened for celiac disease?

Edward J. Hoffenberg


A number of studies have assessed the prevalence of CD in Western Europe and, more recently, in the United States, and new information is forthcoming from developing countries and other parts of the world. .....

The results of these studies show remarkably consistent results, suggesting that the frequency of CD in Western populations is in the range of 1:50 to 1:300 (0.3% to 2%) …..


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USA


The exact prevalence of celiac disease is hard to determine. Since the blood test came out just a few years ago, it may be simply that more people are being identified rather than more people having it.
As Crowe explained in a recent lecture: “Celiac disease may be much more common than previously thought, with a prevalence as high as 1 in 125 to 1 in 300 [people] in the western world. The true prevalence of celiac sprue remains to be established by large multi-center studies in which serology and intestinal biopsy are consistently evaluated.”
U.Va. hopes to participate in that kind of national study, which is currently in the planning stage......

www.virginia.edu/insideuva/2002/25/celiac_sprue.html

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USA

Celiac disease is far more common than thought.(USA)
A massive, multi-center study has found that celiac disease is much more common in the United States than previously believed. The study, published in the 10 February 2003 issue of the Archives of Internal Medicine, found that one out of every 133 Americans has celiac disease. Since only about one out of 4,700 Americans has been diagnosed, this means that 97 percent of cases in this country go undetected.


www.uchospitals.edu/news/2003/20030210-celiac.html

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CD in Saharawis


...a 5.6% prevalence of coeliac disease..five to ten times the frequency in developed countries....

www.who.int/bulletin/pdf/2001/issue6/vol.79.no.6.541-545.pdf

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[kickingfrog]

Prevalence of CD

Crossed Grain Summer 2022 Issue 2002 page 14


Coeliac EU Cluster Scientific Programme

{from} a new (anti-tTG) blood test
.
...samples taken ...suggests a prevalence of 1 in 80 .



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Crossed Grain Summer 2003 Issue 56

(Page 6, Andrew Ladds, Chief Executive, CUK)

...the recent reporting by the scientists leading the European Coeliac Cluster project are suggesting that

in NW Europe, the population is 1:80 (symptomatic) and by adding the asymptomatic patients, then this figure is 1:67.

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In a private letter Andrew Ladds points out that only 1 in 4 coeliacs are diagnosed in UK.

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CD in UK

NHS Direct


Estimates of the number of people who have coeliac disease in the UK have probably been underestimated in the past. Recent scientific and medical studies indicate that those now experiencing a gluten intolerance in the UK to be less than 1 in 100. Indeed recent reporting by the scientists leading the European Coeliac Cluster project suggest that
in NW Europe, 1in 80 people have symptomatic coeliac disease.

It is also known that the condition runs in families, suggesting a genetic link.



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CD incidence


www.enabling.org/ia/celiac/sn/spnk9509.html

A 1994 European study showed that in the previous five years, the incidence of CD was about one in 300 in Sweden, when active screening took place.
In Finland, when blood donors were tested, one in 270 were shown to be silent celiacs

(non-symptomatic with severe intestinal lesions).

In Italy, where school children were tested, one in 250 were found to be celiacs.

Q: What is the incidence of CD in non-Caucasians?
A: There are cases, but the rate of incidence is unknown. A study from North Africa suggests the disease is frequent there, but there were no statistics from the study.

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Estimates of the prevalence of coeliac disease in different area of the world have been proposed. Previously, the prevalence of CD was thought to be around 1:3000. Now new studies show that this is most likely to be very wrong and

the real prevalence is around 1:350 or more, both in Europe and the USA.

In the study in the Netherlands, the ratio of recognised to unrecognised cases is thought to be 1:14.

The reason for this is due to the great variance in the presentation of coeliac disease. The disease can manifest as symptomatic, "silent", and as latent-potential cases. A "coeliac iceberg" has been proposed to illustrate the present situation:

www.portfolio.mvm.ed.ac.uk/studentwebs/session2/group24/coeliac_epigen.htm

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Trop Gastroenterol. 2002 Jul-Sep;23(3):117-9.

Adult onset celiac disease in north India.

Sachdev A, Srinivasan V, Maheswary S, Mohan H, Ashish B, Singh LS.

Departments of Medicine and Pathology, Government Medical College & Hospital, Chandigarh-160 047, India. [e-mail]

INTRODUCTION: Informations on celiac disease among Indian adults is scarce. With the availability of improved and more accessible diagnostic tools for celiac disease, the disease is being more frequently recognized among the adults. Therefore, a retrospective analysis of duodenal biopsies were performed to identify adult celiac disease among Indian patients.
MATERIAL AND METHODS: A retrospective analysis of the patients, who had villous atrophy on duodenal biopsy between February, 1997 to June 2001, was performed. The clinical presentation, laboratory parameters, treatment and follow up details of patients diagnosed as adult onset celiac disease were analysed. Diagnosis of celiac disease was established in these patients as per ESPGAN criteria.
RESULTS: There were 68 duodenal biopsies during the study period. Thirteen (10 were under 15 years of age and 3 had followup biopsy) biopsies were excluded. Eleven (20%) out of 55 patients with villous atrophy in their duodenal biopsy satisfied the ESPGAN criteria for the diagnosis of celiac disease. The age at the time of diagnosis ranged from 15-56 years (mean 36.8 years).
Male to female ratio was 5:6. Chronic diarrhea (99%) was the most common presentation followed by weight loss (88%) and anemia (66%). Only one patient had refractory iron deficiency anemia (11%). Histopathological examination showed, subtotal villous atrophy in 6 patients and partial villous atrophy in 5.
Nine out of 11 patients had raised concentration of IgA antigliadin antibody.
Two patients also had raised concentration of antiendomysial antibody. All of them showed favorable clinical response to Gluten free diet.

CONCLUSION: Coeliac disease is considered rare in the tropics.
Our study shows that this disease may not be as infrequent as is thought.

PMID: 12693151 [PubMed - indexed for MEDLINE]

www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12693151&dopt=Abstract


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Seroprevalence, correlates, and characteristics of undetected coeliac disease in England
J West et al

Undetected coeliac disease is likely to affect approximately 1% of the population of England aged 45–76 years,

a value similar to several other countries

gut.bmjjournals.com/cgi/content/abstract/52/7/960

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How many coeliacs in UK?


(by email)

I asked Bruno Jarry how many coeliacs there are in UK.

I explained I had seen figures varying from 1 in 80 to 1 in 2000 for UK.
He kindly replied thus:

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….
We do not have prevalence numbers for UK but in the other EU countries where we have numbers, range in the general population of the Celiac Disease marker "blood serum anti-transglutaminase IgA" positivity, varies between 1 and 50 and 1 in 200 persons depending on the country. Similar numbers have been reported recently in the US. Of course by far not all these people are sick but they all are potentially celiac, all sharing the right associated genetics.
Your 1 in 2000 number refers likely to people medically diagnosed with Celiac Disease, which means that they are declared sick by their doctor. The recent availability of an easy to run blood test for CD should logically push this number in the high during the coming years as more cases with complex symptoms will be tested and proven positive.

bruno Jarry


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Adult coeliac disease: Prevalence and clinical significance

Background and Aims: Although coeliac disease is a common condition, the role of population screening is not clear. The aim of this study was to determine the prevalence and clinical significance of coeliac disease in the adult population of Christchurch, New Zealand

.....the overall prevalence of coeliac disease was 13 of 1064 subjects (1.2%, or 1 : 82...


Conclusions: The prevalence of coeliac disease in the adult population of Christchurch, New Zealand, is 1.2%.
Unrecognized coeliac disease which was detected by population screening was three-fold more common than proven or suspected coeliac disease. Population screening may identify subjects who could benefit from treatment

www.blackwell-synergy.com/links/doi/10.1046/j.1440-1746.2000.02290.x


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1 in 67 does represent the real risk in some parts of Europe


Posted by Charlotte, Oxford on 17/11/2005 GF board

The widely accepted rate of 1% for many European populations is based on biopsy proven cases.

When antibody (EmA, tTTg) positives (which are very specific to CD) in whom biopsies are not performed are included, the numbers usually rise by a third: ie 1 in 67.

I understand 1 in 67 represents a figure now accepted for the European countries believed to be most at risk of CD, like Finland. More recent research suggests this figure can be found elswehere eg Spain.
"http://content.nejm.org/cgi/content/short/348/25/2517"
Prevalence of Celiac Disease among Children in Finland
“Thus, the estimated biopsy-proved prevalence was 1 case in 99 children. All but two of the antibody-positive subjects had either the HLA-DQ2 or the HLA-DQ8 haplotype. The prevalence of the combination of antibody positivity and an HLA haplotype associated with celiac disease was 1 in 67.”



COELIAC DISEASE IN FINLAND -EVEN MORE COMMON THAN THOUGHT BEFORE

K. Mustalahti1 et al Tampere, Finland

“Thus, the total prevalence of previously diagnosed CD (n=38) and EMA positivity (n=90) was 1:50 and the prevalence of previously diagnosed CD and tTG positivity (n=120) was 1:40.”

The results of European research looking at the figures from a number of current epidemiological studies were reported the Coeliac Conference in Belfast in 2004 …..

Prevalence of coeliac disease in four European countries.

Mustalahti K et al and the members of the Coeliac EU Cluster, Epidemiology.
Tampere, Finland, Freiburg, Germany, Ancona and Trieste, Italy and Belfast, Northern Ireland.

Aim: To establish the prevalence of CD and tTG positivity in four European countries using a large population-based screening approach.

Materials:
Finland: Prospectively collected population based material of 6403 adults.

Germany: Prospective material of 4173 adults and retrospective material of 4633 adults.

Italy: Prospective material of 4779 adults and prospective material of 2649 children.

Northern Ireland: prospective material of 1975 children and retrospective material of 4656 adults.

Results:
Prevalence 1 includes previously diagnosed CD and tTG positivity.

Prevalence 2 includes previously diagnosed CD and EMA positivity.

Finland: Prevalence1/Prevalence2: 1:40/1:50.

Germany: Prospective material: 1:220/1:522. Retrospective material 1:74/1:463.

Italy: Prospective adult material 1:79/1:145. Prospective children material 1:80 /1:88.

Northern Ireland: Prospective children material 1:86 /1:123. Retrospective adult material 1:53/1:67.

Conclusions: Undiagnosed CD seems to be common in all populations and can be diagnosed only by active serological screening. The prevalence of the disease is not the same in all population.

[Note how badly Germany is doing in diagnosing CD. France is worse].
From Spanish research:
Prospective Population Screening for Celiac Disease: High Prevalence in the First 3 Years of Life. Journal of Pediatric Gastroenterology & Nutrition. 39(1):80-84, July 2004. Castano et al

"Conclusions: The authors observed a very high prevalence of CD [1 in 118], comparable to that observed in other European populations, which might even be higher [1 in 69] if all of the children initially examined had returned for their second visit.."


After publication, the authors of the 2003 Finnish study - from the New England Journal of Medicine (and you don't get more prestigious than that) - actually suggested even higher figures because studies do not take into account the fact that some cases of CD are seronegative. This was confirmed by Dickey's research on GP detected CD, posted last month. Screening by serology alone misses up to 20% of cases of CD.
An additional 20% would mean the real prevalence was 1 in 58.
(Incidentally nor do the studies normally include tests for IgA negativity which would also push the figure up.)

Screening for Celiac Disease
Lebwohl B., Green P. H.R., Mäki M., Mustalahti K., Knip M., Fasano A.

N Engl J Med 2003; 349:1673-1674, Oct 23, 2003.
Correspondence

"Despite the unexpectedly high prevalence of celiac disease found in the study by Mäki et al. (June 19 issue),1 their use of endomysial and tissue transglutaminase antibodies as the sole serologic markers probably underestimated the prevalence of celiac disease in the cohort. One study evaluating endomysial antibodies showed that the sensitivity of this marker was 100 percent in patients with total villous atrophy, but the value plummeted to 31 percent in patients with celiac disease who had partial villous atrophy.
Antibodies to tissue transglutaminase likewise correlate with the degree of villous atrophy."

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The Widening Spectrum of Celiac Disease

by Joseph Murray, MD, PhD

summarised by Jim Lyles (Sprue-nik Press, Nov. 1996)

Prevalence of CD

How common is CD? A few years ago it was thought that the prevalence of CD in Europe varied from 1:300 (one out of 300 people) to 1:2000.

Now the figures vary from 1:90 to 1:600, depending on which study you look at. These figures are mostly based on studies involving anonymous blood donors, or screening healthy populations such as school children.
These figures are not based on going to hospitals and counting the number of diagnosed celiacs.

CD is rare in the Negroid and Asian races, though not unheard of.
This may be because the major starch in China and Africa was not wheat until fairly recently.
So until these populations are exposed to large amounts of wheat, we may not know what the true prevalence of CD is in those countries.
The rate of diagnosis of CD seems to be directly related to the level of suspicion of the doctor, hospital, or health care system.
It has been well-studied in places like Scotland where the rate of diagnosis in one area is found to be high and then in another area it is much lower.
Then someone with an interest in CD transfers to the second area and the rate of diagnosis of CD suddenly increases.

members.ozemail.com.au/~coeliac/sprue.html


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Coeliac disease in developing countries: Middle East, India and North Africa.

Malekzadeh R, Sachdev A, Fahid Ali A
Digestive Disease Research Center, Tehran University of Medical Sciences, Shariati Hospital, Kargar Shomali Avenue, Tehran, Iran. [e-mail]

Following the application of simple serological tests for the diagnosis of coeliac disease (CD) in the 1980s, it gradually became clear that the prevalence of CD in different countries in the Middle East, North Africa and India is almost the same as that in Western countries.

The prevalence of CD in at-risk populations in these regions is reported to range between 3 and 20% and the prevalence in people with type 1 diabetes is approximately 3-5%.

Clinical manifestations of CD vary markedly with age, the duration and the extent of disease. Clinical studies showed that presentation with non-specific symptoms or no symptoms is as common in the Middle East as it is in Europe. Wheat has been the major staple food in these regions for many centuries and it is possible that the continuous and high level of exposure to wheat proteins has induced some degree of immune tolerance, leading to milder symptoms, which are misdiagnosed as irritable bowel syndrome or unexplained gastrointestinal disorders.
A high index of suspicion for CD should be maintained in all developing countries for patients who present with chronic diarrhoea or iron deficiency anaemia.The best method for diagnosing CD in patients with diarrhoea is the panel of coeliac serological tests followed by small-bowel biopsy.
In the absence of supplies for a gluten-free diet in Middle Eastern countries, maintaining this diet represents a real challenge to both patients and clinicians.


Published 31 May 2005 in Best Pract Res Clin Gastroenterol, 19(3): 351-8.



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Does Coeliac Disease Occur in The Developing World?

J. Decker Butzner. Department of Pediatrics, University of Calgary, Calgary, Alberta, CANADA

Coeliac disease occurs in genetically susceptible individuals who develop intolerance to the wheat storage protein, gluten, and to other similar proteins found in barley and rye. It occurs in 8 to 15% of 1st degree relatives of patients with coeliac disease and has been associated with the selected major histocompatibillity complex genes, HLA-DR3 and DQ2. Infants with coeliac disease classically present with chronic diarrhoea, abdominal distension and failure to thrive; features identical to those of the postenteritis enteropathy syndrome that frequently occurs in infants from the tropical world.
Coeliac disease is manifested by a small intestinal injury, characterised by villus blunting, crypt hyperplasia, and inflammation of the lamina propria. This injury appears indistinguishable from that observed in biopsies of infants with postenteritis enteropathy. Serum screening tests, including IgA-antiendomysial (IgA-EMA) and tissue transglutaminase (IgA-tTG) antibodies, have markedly improved diagnostic accuracy and demonstrated that coeliac disease is more common than previously suspected.
Epidemiological studies carried out in Europe and more recently North America have documented a prevalence ranging from 1:130-1:500.
It is reasonable to suspect a similar prevalence in populations of the rest of the world with similar HLA haplotypes and where wheat-type grains are food staples.

Few studies have been conducted, but recent investigations from South America, North Africa, and Asia suggest coeliac is under diagnosed in susceptible populations.

Tools are now available to conduct large epidemiological studies to determine the prevalence of coeliac disease and its contribution to the postenteritis enteropathy syndrome in the developing world. Funding to conduct these studies is urgently required.


Published 31 May 2005 in Best Pract Res Clin Gastroenterol, 19(3): 351-8.

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