NORTH TEXAS GLUTEN INTOLERANCE SUPPORT GROUP

PROFESSIONAL PACKET  2006

 New U.S. Celiac Prevalence Figures:  1% (1 in 133 healthy Americans or 2.2 million people are living with Celiac Disease and 97% don’t know it)!

NIH CONSENSUS PANEL FINDS CELIAC DISEASE UNDER- DIAGNOSED:

Panel Recommends Six Key Strategies for Disease Management

Dear Medical Professional:

       We want to update you about Celiac Disease and Dermatitis Herpetiformis.  We hope you will refer newly diagnosed celiacs and people with dermatitis herpetiformis immediately to a dietitian familiar with the gluten free diet and to our group.  I have been attending celiac educational conferences for many years.  We who live with the gluten-free diet every day have all the tools to help newly-diagnosed celiacs.

      Dr. Ciaran Kelly, gastroenterologist in Boston says that it is important for doctors to know that Celiac Disease is common and easily diagnosed.  There is need for more education of physicians and dietitians regarding diagnosing and treatment of CD.  (See III and IV on other pages.)

      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 may be due to several factors:

            Most MD's and RD's were taught that Celiac Disease was a rare disease 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, patients are not routinely tested for CD.  Some of the symptoms and complications of CD are listed on our chapter website. Irritable Bowel Syndrome (IBS)-type symptoms and severe fatigue can be signs of CD.  However, now patients present with more extraintestinal symptoms.  THINK CELIAC DISEASE high on your list of possible diagnoses!

1.   The small bowel endoscopy with biopsy is still considered the gold standard for diagnosis.  However, serologic tests are useful first screening tools when studying those with an increased risk for the disease or when CD is suspected. It is essential that all these tests be done while the patient is on a gluten- containing diet. However, keep in mind that the blood tests tend to pick up medium- to full-blown Celiac Disease. Certain “national” laboratories that have convened together about standards have more experience and reliability than some local labs.

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.  However, five tests should be done to screen for Celiac Disease; i.e., the IgA anti-gliadin antibody, IgG anti-gliadin antibody, anti-endomysial (EMA) and tissue transglutaminase (tTG), as well as the Serum IgA to test whether the patient is IgA deficient.

3.   Endoscopy samples may miss active patches of the disease in the specific samples that are drawn. Therefore, multiple samples (8-20 total) are recommended from both the first and second portion of the small intestine.

4.   Pathologists may not recognize early features of CD and only report a positive diagnosis with total villous atophy. (Many CD patients present with various degrees of partial villous atrophy.)

5.  Dermatitis Herpetiformis is the skin manifestation of Celiac Disease. To diagnose, one takes a tissue sample next to a lesion for direct immunoflourescence.  While Dapsone is often used to control the itching, the cornerstone of therapy is a gluten-free diet.  If a DH patient has been diagnosed correctly with an immunoflourescence biopsy, that person need not have blood screening or endoscopic procedure because they automatically have Celiac Disease. Gluten ingestion causes the skin manifestation.

6.   Celiac Disease is genetic and autoimmune. Therefore, CD can present in family members or in later generations.  People with conditions such as Type 1 Diabetes, Addison’s Disease, thyroiditis, Sjogren’s syndrome, Rheumatoid arthritis, Lupus, etc., are at risk to develop Celiac Disease.  In addition, a variety of neurophychiatric conditions such as depression, anxiety, peripheral neuropathy, ataxia, epilepsy with or without cerebral calcifications and migraine headaches have been reported in individuals with CD.  People with such extraintestinal presentations as unexplained short stature, delayed puberty, infertility, recurrent fetal loss, osteoporosis, vitamin deficiencies, fatigue, protein calorie malnutrition are more at risk to develop CD.

7.   A bone density test is important for all celiacs, both at the time of diagnosis and follow up, because of the          possibility of the patient not absorbing enough calcium and vitamin D for years.

8.   To put Celiac Disease in perspective:  Type 1 Diabetes affects 1,177,500 people; 6% of those will also have CD.  610,000 women in the U.S. experience unexplained infertility; 6% of these women might never learn that CD is the cause.  350,000 people in the U.S. are living with Down Syndrome; 12% of them also have CD.  The number of people with CD in the U.S. is roughly equal to the number of people living in the state of Nevada.  The incidence of autoimmune diseases in the general U.S. population is 3.5%.  Research has shown that those diagnosed with Celiac Disease between 2-4 years of age had a 10.5% chance of developing another autoimmune disorder and the chances increase the older patients are diagnosed, up to 34% over the age of 20.  Source:  Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease.  SIGEP Study Group for Autoimmune Disorders in Celiac Disease.  Ventura A. et.at.  Gastroenterology 1999 Aug; 117(2):297-303.

9.   Certain populations have an increased prevalence of CD.  Among more groups with increased risk are those with diabetes mellitus, Down syndrome, Turner syndrome, Williams syndrome, selective IgA deficiency, and autoimmune disorders.  Prevalence in people with related symptoms: 1 in 56; in people with first degree relatives: 1 in 22; in people with second-degree relatives who are celiac: 1 in 39; estimated for prevalence for African, Hispanic and Asian-Americans: 1 in 236.  The average length of time it takes for a symptomatic person to be diagnosed with celiac disease in the U.S. is eleven years; this delay dramatically increases an individual’s risk of developing additional auto-immune disorders, neurological problems, osteoporosis and even cancer.  Source:  Characteristics of adult celiac disease in the USA: results of national survey.  Green, P.H. et.al. American Journal of Gastroenterology, 2001. 

      We ask that you refer your newly diagnosed celiac patients to our support group, North Texas GIG and our website, www.northtexasgig.com.  Newly-diagnosed celiacs can use this site as an introduction to the disease and gluten-free diet issues.  It is vitally important that patients get tested correctly and not try out a gluten-free diet themselves, and thus possibly compromise a future testing process.  You can refer your new patients to this site to get them started on the gluten-free diet.  Again, please refer new celiacs to us to participate in our meetings.  The key to successful journey to health is continuing education about the disease and dietary issues.  

      Our chapter newsletter, The North Texas GIG Communicator, gives medical information about Celiac Disease and Dermatitis Herpetiformis, dietary coping strategies, gluten-free product information, articles by celiacs themselves and gluten-free recipes. We hope you will refer new celiac patients to our support group.  We give supplemental information to that of our parent national organization, GIG, Gluten Intolerance Group, www.gluten.net.  We conduct a separate class, called Celiac 101, for any newly-diagnosed celiac who comes to our meetings giving them a comprehensive introduction to the gluten free living lifestyle.  We also conduct a meeting for all the "well seasonsed" celiacs updating them on any new information regarding their particular health issues. Please support us in our endeavors.

      Celiac Disease can ultimately be a very satisfying diagnosis, both for the patient and the physician.  It is readily treatable, requires no dangerous medications and can dramatically improve the patient’s health, sense of well being, and quality of life.

Sincerely,

Betty Barfield, President

North Texas Gluten Intolerance Group

NOTE:  Locally, the North Texas Gluten Intolerance Support Group www.northtexasgig.com assists people who have been diagnosed with Celiac Disease (gluten intolerance), people who are sensitive to wheat, people with Dermatitis Herpetiformis, and families with autistic children who need a casein-free, gluten-free diet.  The North Texas group is a chapter of the national Gluten Intolerance Group of Seattle, WA.  We meet on the first Saturday of the month at Richland Hills Church of Christ, 6300 NE Loop 820, N. Richland Hills, TX 76180.  A free Celiac 101 class is held at 9AM – 12PM for the newly diagnosed and our regular support group meeting starts at 10AM – 12PM.  Questions:  contact Betty Barfield, 817-967-2804 or manager@northtexasgig.com

I.    NIH CONSENSUS PANEL FINDS CELIAC DISEASE UNDER-DIAGNOSED:  Panel Recommends Six Key Strategies for Disease Management

      The National Institutes of Health (NIH) Consensus Development Conference on Celiac Disease was held in Bethesda, MD, on June 28-30. 2004.  The full text of the panel's draft consensus statement is available at http://consensus.nih.gov/cons/118/118cdc_intro.htm.  The archived videocast of the conference sessions is available at http://consensus.nih.gov/

SUMMARY OF HIGHLIGHTS

      Celiac Disease has many names: celiac sprue, gluten-sensitive enteropathy, non-tropical sprue, gluten intolerance, in addition to a host of other names.  It is thought to result from activation of both a cell-mediated (T-cell) and humoral (B-cell) immune response upon exposure to gluten (prolamins and glutenins) of wheat, barley and rye.  Celiac disease is considerably under­ diagnosed, according to an independent consensus panel convened in June 2004 by the National Institutes of Health (NIH).

      The panel, charged with assessing all of the available scientific evidence on celiac disease announced its recommendations for the appropriate diagnosis and management of this disease, which was previously believed to be rare. Celiac disease may affect 3 million Americans. The disease is present in 0.5 to I % of the U.S. population, ten times higher than previous estimates.

      "We know that celiac disease is caused by an immune response to the gluten in certain common grains, so we have a very effective treatment - a gluten-free diet - but if physicians don't recognize when to test for the disease, patients are going to suffer needlessly", said Charles Elson, M.D. of the University of Alabama at Birmingham, and chair of the consensus panel. He added, "Because the disease has been thought to be rare, testing for it may not occur to many physicians. We hope that this conference will help to increase physician awareness."

      The panel found that increasing physician awareness of the various manifestations of celiac disease and appropriate use of available testing strategies may lead to earlier diagnosis and better outcomes for celiac patients

How Is Celiac Disease Diagnosed?

      All diagnostic tests need to be performed while the patient is on a gluten-containing diet. The first step in pursuing a diagnosis of celiac disease is a serologic test.  Based on very high sensitivities and specificities, the best available attests are the IgA antihuman tissue transglutaminase (tTG) and IgA endomysial antibody immunoflourescence (EMA) tests that appear to have equivalent diagnostic accuracy. 

      Biopsies of the proximal small bowel are indicated in individuals with a positive celiac disease antibody test, except those with biopsy-proven dermatitis herpetiformis.  Multiple biopsies should be obtained because the histologic changes may be focal.  Biopsies should be obtained from the second portion of the duodenum or beyond.  The pathology report should specify the degree of crypt hyperplasia and villous atrophy as well as assess the number of intraepithelial lymphocytes. Some degree of villous atrophy is considered necessary to confirm a diagnosis of celiac disease.  Standardization of the pathology reports in celiac disease is desirable, using published criteria such as modified Marsh criteria (1999). Communication between the pathologist and the individual’s physician is encouraged to help correlate the biopsy findings with laboratory results and clinical features.  With concordant positive serology and biopsy results, a presumptive diagnosis of CD can be made.  Definitive diagnosis is confirmed when symptoms resolve subsequently with a gluten-free diet.  A demonstration of normalized histology following a GF diet is no longer required for a definitive diagnosis of CD.

How Prevalent is Celiac Disease?

      Population-based studies in the U.S. suggest that the prevalence of CD is in the range 0.5 to 1.0 percent, similar to estimates in Europe or 1 in 133 healthy Americans. These prevalence figures include both symptomatic and asymptomatic individuals.   

What are the Manifestations and Long-term Consequences of Celiac Disease?

      Celiac disease traditionally has been defined as a gastrointestinal malabsorptive disorder that can present early in childhood after the introduction of gluten.  It is now recognized, however, that the clinical manifestations are highly variable, may present at any age and involve multiple organ systems.  Prolonged delays in diagnosis are common.

      Typical gastrointestinal manifestations may include diarrhea, weight loss, failure to grow, vomiting, abdominal pain, bloating and distension, anorexia, and constipation.  The presence of obesity does not exclude the diagnosis.  It is very common for CD to present with extraintestinal manifestations, sometimes with little or no gastrointestinal symptoms.  A distinctive example is dermatitis herpetiformis, an intensely pruritic rash on the extensor surfaces of the extremities.  Iron deficiency anemia is common and may be the only presenting sign.  Other extraintestinal  presentations are unexplained short stature, delayed puberty, infertility, recurrent fetal loss, osteoporosis, vitamin deficiencies, fatigue, protein calorie malnutrition, recurrent aphthous stomatitis, elevated transaminases, and dental enamel hypoplasia.  CD may also be associated with autoimmune conditions such as thyroiditis, diabetes type 1, Addition’s disease, Sjogren’s syndrome, Rheumatoid arthritis, etc.  In addition, a variety of neurophychiatric conditions such as depression, anxiety, peripheral neuropathy, ataxia, epilepsy with or without cerebral calcifications, and migraine headaches have been reported in individuals with CD.

      Based on the research presented it seems that CD represents a spectrum of clinical features and presentations.  Although Classical CD (villous atrophy and intestinal malabsorption) is most commonly described, it appears that most patients have atypical CD which is fully developed gluten-induced villous atrophy found in the setting of another presentation such as iron deficiency, Osteoporosis, short stature, or infertility.  The silent CD in asymptomatic patients is found either by serologic screening or perhaps an endoscopy for another reason.  Another form is the latent CD, which is characterized by a previous diagnosis that responded to a GF diet and retained a normal mucosal histology upon a later introduction of gluten, or can represent patients with normal mucosa but develop gluten sensitive enteropathy. 

 Complications of Celiac Disease

      Complications of CD typically occur after many years of disease and usually are observed in adults.  Refractory CD refers to persistence of symptoms and intestinal inflammation despite a gluten-free diet.  This may occur in the context of ulcerative jejunity, or it may be an early manifestation of intestinal lymphoma. Some evidence suggests that a GF diet may reduce lymphoma risk.

Who Should Be Tested for CD?

      Individuals with GI symptoms, including chronic diarrhea, malabsorption, weight loss, and abdominal distension, should be tested for CD.  Because CD is a multisystem disorder.  Physicians should be aware of other conditions for which CD testing should be considered.  People with the conditions mentioned in the paragraph ”Manifestations and Long-Term Consequences” above are more at risk to develop CD.  In addition, other conditions for which CD testing may be considered include irritable bowel syndrome, osteopenia/osteoporosis, etc.  At this time, there are insufficient data to recommend screening of the general population for celiac disease.

What is the Management of Celiac Disease?

      Treatment for CD should begin only after a complete diagnostic evaluation including serology and biopsy.  The management of celiac disease is a gluten-free diet for life, excluding wheat, barley and rye.  The practical inclusion of oats in a GF diet is limited by potential contamination with gluten during processing.

      Based on its assessment of an extensive collection of medical literature and expert presentations, the panel identified six elements essential to treating celiac disease once it is diagnosed:

C - Consultation with a skilled dietitian,

E - Education about the disease,

L - Lifelong adherence to a gluten-free diet,

I - Identification and treatment of nutritional deficiencies,

A - Access to an advocacy group, and

C - Continuous long-term follow-up.

What Are the Recommendations For Future Research on Celiac Disease and Related Conditions?  See list of research studies recommended in the NIH Draft site.

Conclusions and Recommendations

      Celiac disease is an immune-mediated intestinal disorder with protean manifestations.  CD is common, affecting 0.5 to 1.0 percent of the general population of the U.S., but is greatly under diagnosed.  There are now specific and sensitive serologic tests available to aid in diagnosis that need to be more widely applied.  The treatment of CD remains a lifelong gluten-free diet, which results in remission for most individuals. The classic presentation of diarrhea and malabsorption is less common, and atypical and silent presentations are increasing.  Most individuals are being seen by primary care providers and a broad range of specialists.  Therefore, heightened awareness of this disease is imperative.  Education of physicians, registered dietitians, and other health providers is needed.

      The Panel recommended the following:

1    Education of physicians, dietitians, nurses, and the public about CD by a trans-NIH initiative, to be led by the NIDDK in association with the Centers for Disease Control and Prevention.     Standardization of serologic tests and pathologic criteria for the diagnosis of CD.

2    Adoption of a standard definition of a gluten-free diet based on objective evidence such as that being developed by the American Dietetic Association.

3    Development of an adequate testing procedure for gluten in foods and definition of standards for GF foods in the U.S. to lay the foundation for national food labeling.

4    Formation of one federation of CD societies, CD interest groups, individuals with CD and their families, physicians, dietitians, and other health care providers for the advancement of education, research, and advocacy for individuals with celiac disease.

More information can be obtained by visiting the website listed at the beginning of this summary. 

II.   RESOURCES

UNIV. OF MARYLAND CENTER FOR CELIAC RESEARCH

www.celiaccenter.org   The Center is co-directed by Alessio Fasano, MD.; the Center is engaged in clinical care, diagnostic support, education, and clinical and science research.

CELIAC DISEASE CENTER AT COLUMBIA UNIVERSITY

www.celiacdiseasecenter.columbia.edu   The Center is directed by Peter Green, MD., and devoted to patient care and physician and patient education and research.

UNIVERSITY OF CHICAGO CELIAC DISEASE PROGRAM

www.uchospitals.edu/specialties/celiac/index.php ; Hotline Phone: 773/702-7593.

The Center is directed by Stefano Guandalini, MD., and dedicated to patient care services, research activities, medical education and public awareness.

GLUTEN INTOLERANCE GROUP (GIG), Seattle, WA.  www.gluten.net ; Phone: 206/2476-6652.

Free booklet, Diabetes, Celiac Disease and Me, available through website.  Many educational pamphlets, including “Quick Start Diet Guide for Celiac Disease.”

CELIAC DISEASE FOUNDATION, Studio City, CA www.celiac.org ; 818/990-CELIAC.  Cooperated on “Quick Start Diet Guide for Celiac Disease.”

NORTH TEXAS GIG, serving Tarrant County, TX and surrounding area www.northtexasgig.com.  Betty Barfield, President, betty.barfield@aa.com, 817-967-2804.

GLUTEN-FREE DIET:  A COMPREHENSIVE RESOURCE GUIDE  by Shelley Case, R.D. See her website at www.glutenfreediet.ca to read the reviews, table of contents and how to order. 

E-Mail: info@glutenfreediet.ca; Phone: (306) 536-7716.  Get free copy of “Going Gluten-Free: A Primer for Clinicians” on this website.

WHEAT-FREE, WORRY-FREE, THE ART OF HAPPY, HEALTHY, GLUTEN-FREE LIVING by

Danna Korn, Hay House, pub.

III. EDUCATIONAL CAMPAIGN – NEW PHYSICIAN MATERIALS

        The Children’s Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced the launch of a new educational campaign on Celiac Disease, one of the most common genetic digestive conditions possibly affecting as many as three million Americans (up to 1 percent). Since it has been proven that early detection and intervention can prevent long-term consequences, CDHNF and NASPGHAN are focusing on accurate and timely diagnosis and treatment in children.

      “We plan to raise greater awareness about celiac disease and urge physicians to add it to their screening checklist,” said Alessio Fasano, M.D., chair of the CDHNF Celiac Disease Campaign, NIH Consensus speaker and director of the Mucosal Biology Research Center for the University of Maryland School of Medicine Center for Celiac Research. “We now have the information we need on how to diagnose and treat this disease and we need to start applying that knowledge into practice.”

         To help spread the word, the campaign will include physician materials such as a celiac disease physician CME slide set, a nationwide Grand Rounds program, and a soon-to-be released NASPGHAN “Clinical Practice Guideline on the Evaluation and Management of Celiac Disease in Children,” in the fall of 2004.  In addition, a new web site, http://www.celiachealth.org will provide resources for the medical professional community and the general public.

IV.  FOOD ALLERGEN LABELING and CONSUMER PROTECTION ACT

       President Bush signed the Food Allergen Labeling and Consumer Protection Act (S. 741) into law on August 2, 2004!   (Enactment began Jan. 1, 2006.)

            This bill amends the Federal Food, Drug, and Cosmetic Act to require a food that contains, or is derived from, a major food allergen to indicate that information on its label. Defines "major food allergen" as any of the following top 8 allergens: milk, eggs, fish, crustacea, tree nuts, peanuts, wheat and soybeans. Additionally,  it provides that the labeling requirement must be met by stating the common or usual name of the food allergen in the list of ingredients or by other methods allowed by the Secretary. It requires allergens in flavoring, coloring, or incidental additives to also be labeled in accordance with these requirements.  Some manufacturers are using such labeling at the present time.

            When this legislation goes into affect in January 2006, it will enable celiacs and people with other food sensitivities to be able to read food labels more effectively.  However, this bill does not affect medicines.  Pharmaceutical companies, physicians, and druggists need to partner together to help inform the public about allergens in their products, both over-the-counter and prescription.  We cannot judge from the package labels concerning gluten in most meds at the present time.

V.    INTERESTING SAMPLE of CELIAC RESEARCH ABSTRACTS

More and more celiac research is being done!

CELIAC DISEASE.  CME UPDATE FOR FAMILY PHYSICIANS
      Can Fam Physician. 2004 May;50:719-25.  Devlin SM, Andrews CN, Beck PL.;  Division of Gastroenterology, Faculty of Medicine, University of Calgary, Alberta.
OBJECTIVE: To review current understanding of the epidemiology, pathophysiology, diagnosis, and management of celiac disease. QUALITY OF EVIDENCE: Few recent randomized controlled trials (level I evidence) have studied treatments for celiac disease. There are recent comparative studies (level II evidence) and there is well established consensus (level III evidence) on diagnosis and treatment of celiac disease.

MAIN MESSAGE: Celiac disease is an immune-mediated small bowel enteropathy caused by exposure to wheat gluten protein. The disease can be insidious and often presents with only subtle extraintestinal manifestations in a variety of organ systems. Recent epidemiologic surveys suggest celiac disease is much more common in North America than previously thought. Advances in immunology and screening have made diagnosis more reliable than in the past. Removing gluten from the diet is effective in most cases.

CONCLUSION: Celiac disease manifests subtly and is an easy diagnosis to miss. Good laboratory screening tests and effective treatment are available. Family practitioners should consider celiac disease in patients who present with confounding symptoms.

Gynecologic and obstetric findings related to nutritional status and adherence to a gluten-free diet in Brazilian patients with celiac disease.
      J Clin Gastroenterol. 2004 Aug;38(7):567-74. -  Kotze LM.; Gastroenterology Service, Cajuru Hospital,       Pontifical Catholic University of Parana, Curitiba, Parana, Brazil.  loretekotze@hotmail.com
This study shows a broad analysis of gynaecological and obstetrical disturbances in patients with celiac disease in relation to their nutritional status and adherence to a gluten-free diet. The significant findings were observed as follow: adult celiac patients, irrespective of the nutritional status, were younger than controls, presented delayed menarche, secondary amenorrhea, a higher percentage of spontaneous abortions, anemia and hypoalbuminemia. No differences were observed regarding the number of pregnancies, age at menopause and duration of the reproductive period. After treatment, patients presented with normal pregnancies and one patient presented spontaneous abortion. The adolescents who were not adherent to gluten-free diet presented delayed menarche and secondary amenorrhea. In conclusion, gluten per se could explain the disturbances and malnutrition would worsen the disease in a consequent vicious cycle. Therefore, celiac disease should be included in the screening of reproductive disorders.

Mental disorders in adolescents with celiac disease.
      Psychosomatics. 2004 Jul-Aug;45(4):325-35.
      Pynnonen PA, Isometsa ET, Aronen ET, Verkasalo MA, Savilahti E, Aalberg VA. - Hospital for Children and Adolescents, Helsinki University Central Hospital, Helsinki, Finland. paivi.pynnonen@hus.fi
A high prevalence of depressive symptoms, hypothetically related to serotonergic dysfunction, has been reported among adults with celiac disease. The authors used semistructured psychiatric interviews and symptom measurement scales to study mental disorders in 29 adolescents with celiac disease and 29 matched comparison subjects. Relative to the comparison subjects, the celiac disease patients had significantly higher lifetime prevalences of major depressive disorder (31% versus 7%) and disruptive behavior disorders (28% versus 3%). In most cases these disorders preceded the diagnosis of celiac disease and its treatment with a gluten-free diet. The prevalence of current mental disorders was similar in both groups. Celiac disease in adolescents is associated with an increased prevalence of depressive and disruptive behavioral disorders, particularly in the phase before diet treatment.

Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy.
      Dig Dis Sci. 2004 Apr;49(4):546-50.  Abrams JA, Diamond B, Rotterdam H, Green PH.; Department of Medicine, Columbia University College of Physicians and Surgeons, New York, New York, USA.
Our aim was to assess differences in the sensitivities of serologic tests used for the diagnosis of celiac disease among patients with varying degrees of villous atrophy. Among 115 adults with biopsy-proven celiac disease who fulfilled strict criteria, including serologic testing at the time of diagnosis and response to a gluten-free diet, 71% had total villous atrophy and 29% partial villous atrophy. Endomysial antibody was positive in 77% of those with total villous atrophy, compared to 33% with partial villous atrophy (P < 0.001). There was no difference in sensitivity when the type of presentation (classical vs. silent) was compared. Endomysial antibody-positive and negative patients did not differ with respect to age at diagnosis, duration of symptoms, mode of presentation, or family history of celiac disease. All anti-tissue transglutaminase-positive patients had TVA on biopsy. Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature.

Adult celiac disease and the severe "flat" small bowel biopsy lesion.
      Dig Dis Sci. 2004 Apr;49(4):535-45.  Freeman HJ.  Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC, Canada.
Classification of architectural changes in the small intestinal biopsy may be clinically useful to define the cause of diarrhea or suspected malabsorption, especially in adults. Pathologic changes may include severe (flat) or variably severe (mild or moderate) abnormalities. For some disorders, small bowel biopsy findings may be very distinctive and lead to a specific diagnosis. For others, like adult celiac disease, biopsy changes are less specific. Indeed, it is becoming increasingly appreciated that several conditions can produce similar histopathologic changes. Serological assays, including endomysial antibodies and tissue transglutaminase antibodies, may be very useful tools for screening and case finding in clinical practice. However, demonstration of characteristic changes in the small intestinal biopsy is critical, along with a gluten-free diet response.

Villous tip intraepithelial lymphocytes as markers of early-stage coeliac disease.
      Scand J Gastroenterol. 2004 May;39(5):428-33.  Jarvinen TT, Collin P, Rasmussen M, Kyronpalo S, Maki M, Partanen J, Reunala T, Kaukinen K.; Dept. of Internal Medicine, Tampere University Hospital, Medical School, University of Tampere, Tampere, Finland.
CONCLUSIONS: Villous tip analysis seems to distinguish early coeliac from non-specific changes, thus providing a valuable tool in routine practice, especially when borderline findings are involved. Its value appears to be similar to counting of gammadelta+ cells, which, however, requires frozen biopsy samples.

Range of neurologic disorders in patients with celiac disease.
      Pediatrics. 2004 Jun;113(6):1672-6.  Zelnik N, Pacht A, Obeid R, Lerner A.
      Department of Pediatrics, Carmel Medical Center, The Bruce Rappaport

      Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel. nzelnik@netvision.net.il

 

OBJECTIVE: During the past 2 decades, celiac disease (CD) has been recognized as a multisystem autoimmune disorder. A growing body of distinct neurologic conditions such as cerebellar ataxia, epilepsy, myoclonic ataxia, chronic neuropathies, and dementia have been reported, mainly in middle-aged adults. There still are insufficient data on the association of CD with various neurologic disorders in children, adolescents, and young adults, including more common and "soft" neurologic conditions, such as headache, learning disorders, attention-deficit/hyperactivity disorder (ADHD), and tic disorders. The aim of the present study is to look for a broader spectrum of neurologic disorders in CD patients, most of them children or young adults.

CONCLUSION: This study suggests that the variability of neurologic disorders that occur in CD is broader than previously reported and includes "softer" and more common neurologic disorders, such as chronic headache, developmental delay, hypotonia, and learning disorders or ADHD. Future longitudinal prospective studies might better define the full range of these neurologic disorders and their clinical response to a gluten-free diet.

 Probiotics and Prebiotics in Gastrointestinal Disorders                                                    

      Curr Opin Gastroenterol 20(2):146-155, 2004. © 2004 Lippincott Williams & Wilkins.

      Richard N. Fedorak, Karen L. Madsen.  Posted 04/09/2004

Recent findings: The demonstration that immune and epithelial cells can discriminate between different microbial species has extended the known mechanism(s) of action of probiotics beyond simple barrier and antimicrobial effects. It has also confirmed that probiotic bacteria modulate mucosal and systemic immune activity and epithelial function. The progressive unraveling of these mechanisms of action has led to new credence for the use of probiotics and prebiotics in clinical medicine. Level I evidence now exists for the therapeutic use of probiotics in infectious diarrhea in children, recurrent Clostridium difficile-induced infections and postoperative pouchitis. Level II evidence is emerging for the use of probiotics in other gastrointestinal infections, prevention of postoperative bacterial translocation, irritable bowel syndrome, and in both ulcerative colitis and Crohn disease. Nevertheless, one consistent feature has emerged over the past year: Not all probiotic bacteria have similar therapeutic effects. Future clinical trials will need to incorporate this fact into trial planning and design.

Characteristics and quality of illness behavior in celiac disease.
      Psychosomatics. 2004 Jul-Aug;45(4):336-42. de Rosa A, Troncone A, Vacca M, Ciacci C.
      Psychiatry Department, Second University of Naples, Naples, Italy.
The study evaluated the illness behavior of patients with celiac disease and the influence of the disease and its treatment on key personality components and adherence to dietary recommendations. Twenty-nine adult patients with celiac disease and 47 matched healthy comparison subjects participated in the study. More than 70% of the celiac disease group scored in the pathological range on at least one scale of the Illness Behavior Questionnaire. Patients who received the diagnosis in adulthood had a lower score for nonconformism, a greater tendency to pretend to be sociable, and higher levels of psychophysiological reactiveness, relative to the comparison subjects. The results suggest that celiac disease may be associated with changes in personality that may interfere with patients' adaptation to living with a chronic disease.

Screening patients with osteoporosis for celiac disease appears worthwhile.

(Arch Intern Med. 2005; 165:393-399)

CHICAGO – Results of a new study suggest that the higher prevalence of celiac disease in individuals with osteoporosis than in the general population may justify screening of patients with osteoporosis for celiac disease, according to an article in the February 28 issue of Archives of Internal Medicine, one of the JAMA/Archives journals.

Patients with celiac disease have an inappropriate immune response to gluten, a component of wheat proteins, which makes it difficult to properly digest many foods, according to background information in the article. Although adults diagnosed with celiac disease commonly have a low bone mineral density (BMD) and treatment with a gluten-free diet increases their BMD, there has not been clear evidence of the benefit of screening everyone with osteoporosis for celiac disease.

William F. Stenson, M.D., of Washington University School of Medicine, St. Louis, and colleagues evaluated 840 individuals, 266 with and 574 without osteoporosis from the Washington University Bone Clinic by serologic screening for celiac disease (blood test for antibodies associated with celiac disease). The diagnosis of celiac disease was then confirmed with an intestinal biopsy and individuals with a confirmed diagnosis were treated with a gluten-free diet and followed up for improvement in BMD.

Twelve of the 266 patients with osteoporosis and six of those without osteoporosis tested positive by serological screening for celiac disease, the researchers found. Nine patients with osteoporosis (3.4 percent) and one of those without osteoporosis (0.2 percent) had biopsy-proven celiac disease. Further, the authors write, "…the more severe the celiac disease, the more severe the resulting osteoporosis."

"Treatment with a gluten-free diet for a year resulted in improved BMD in individuals with celiac disease and osteoporosis," the authors write. "The improvement in BMD for celiac disease patients on the gluten-free diet was greater than that expected for osteoporotic patients receiving standard therapy."

Editorial: Population-Based Screening for Celiac Disease

In an editorial accompanying this study, Alan L. Buchman, M.D., M.P.H., of the Feinberg School of Medicine at Northwestern University, Chicago, writes that the primary reason to diagnose and treat osteoporosis is to prevent bone fractures. "Low bone mineral density (BMD) is associated with increased fracture risk, and increased BMD during therapy is associated with a corresponding decrease in fracture risk. However, BMD is only one factor that contributes to bone strength and fracture risk in spine and hip."

"Given that most bone mass is achieved by age 18 years, and setting aside cost for the moment, it may be prudent to screen the entire population of high-risk individuals (white girls) during childhood or adolescence, prior to development of osteoporosis or osteopenia," Dr. Buchman writes. "Even patients diagnosed as having celiac disease before menopause have more significant improvements in BMD that those diagnosed after menopause. However, one must evaluate the cost not just to identify an asymptomatic individual with celiac disease, but also to prevent a fracture."

"The cost to prevent a single fracture in a patient with celiac disease and osteoporosis would be $43,000 (similar to the cost of screening mammography to detect a breast cancer)," Dr. Buchman states. "This cost would be far greater for a patient with osteopenia, to say nothing of a population screen." Dr Buchman also points out that, "Not all investigations have reported an increased prevalence of celiac disease in individuals with osteoporosis or an increased fracture risk in patients with celiac disease."

"However, the questions remain: Who should be screened for celiac disease? And at what cost? The data from Stenson et al raise an important issue, but given the variations in study findings and cost estimates, it is impossible to make a clear recommendation for celiac disease screening in a population even as defined as those with osteoporosis," Dr. Buchman concludes. "As is often the case, further study is indicated."

 (Arch Intern Med. 2005; 165:370-371. Available post-embargo at www.archinternmed.com.)

Study Links Osteoporosis, Gluten Intolerance

CHICAGO (Reuters) – 2/28/05

Some people develop osteoporosis, the mineral loss disease that leads to brittle bones, because their bodies cannot tolerate wheat flour, a study said on Monday.

Gluten intolerance, called celiac disease, can be treated, so the damage done by osteoporosis can be reversed in such patients, added the report published in the current issue of the Archives of Internal Medicine.

"Our results suggest that as many as three to four percent of patients who have osteoporosis have the bone disease as a consequence of having celiac disease, which makes them unable to absorb normal amounts of calcium and vitamin D," said William Stenson, a Washington University physician at Barnes-Jewish Hospital in St. Louis. He and colleagues recommended blood tests be used to screen osteoporosis patients for celiac disease. The report was based on a look at 840 patients, some of whom had osteoporosis. It found a much higher prevalence of celiac disease among those with osteoporosis than in those without it.

Celiac disease triggers an immune reaction to the gluten portion of wheat, interfering with the intestine's absorption of various foods. Some patients do not know they have the disease because their symptoms are minor.

In the study, patients with celiac disease and osteoporosis who went on a gluten-free diet for one year were able to improve both gastrointestinal symptoms and bone density, the report said.  "Bone density ... improved dramatically on a gluten-free diet," Stenson said. "We believe the diet allowed their intestines to heal, and that allowed them to absorb normal amounts of calcium and vitamin D to reverse bone loss."

While there is a genetic predisposition for celiac disease, many people don't develop symptoms until later in life, Stenson said.