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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    GLUTEN-FREE DIET DOES NOT HELP KIDS WITH AUTISM


    Jefferson Adams

    Celiac.com 09/21/2015 - A gluten-free diet does nothing to improve behaviors or symptoms of children with autism, according to the results of a study that, though small, is being called the most comprehensive and carefully controlled diet research in autism to date. The study results appear in the Journal of Autism and Developmental Disorders.


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    The study was conducted by Dr. Susan Hyman and colleagues at the University of Rochester Medical Center. Dr, Hyman is the division chief of neuro-developmental and behavioral pediatrics at the University of Rochester's Kirch Developmental Services Center, which sees some 1,200 children with autism each year.

    For the study, a group of preschool children with Autism Spectrum Disorders (ASD) received a gluten-free, casein-free (Gluten-free Casein-free) diet.

    Hyman's study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children's diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

    After four weeks of being established on diet, the children continued on the diet and were given snacks weekly that contained gluten, casein, neither or both.

    In addition to administering a gluten-free casien-free diet, the research team received a full complement of nutrients, such as vitamin D, calcium, iron and high quality protein, which can be lacking in children on gluten-free, casein-free diets.

    The kids were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non-fat dried milk, both, or neither until every child received each snack three times. Snacks were carefully engineered to look, taste and feel the same, and were given randomly with no knowledge by staff, families or children.

    Parents, teachers and a research assistant filled out standardized surveys about the child's behavior the day before they received the snack, at two and 24 hours after the snack.

    However, none of the diet and snack combinations affected children's sleep, bowel habits, or activity.

    The team did observe a small increase in the number of times children engaged in social interaction after eating food containing gluten or casein, but this increase did not reach statistical significance. A similar small increase in social language seen after the gluten challenge also did not reach statistical significance.

    The team cites the need for larger studies that appropriately monitor for diet and other interventions to determine whether gluten or casein affects social interaction or language among other children with ASD, such as children with gastrointestinal (GI) disease.

    For families who wish to eliminate gluten and casein from their child's diet need, the team points out the importance of carefully monitoring the autistic child's nutritional status.

    Sources:

    Department of Pediatrics and Clinical Research Center, Golisano Children's Hospital, University of Rochester Medical Center, Rochester, New York

    Research Supported By: National Institutes for Mental Health (Studies to Advance Autism Research in Treatment) NIMH U54 MH077397 and the National Center for Research Resources (NCRR) NIH UL1RR024160



    Image Caption: Photo: CC--hepingting
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    An 18-week study of a tiny cohort - - less than a typical classroom size, with nearly 1/3 failing to complete the study - - cannot conclude ANYTHING about whether a gluten-free diet helps autistic children. Your article not only implies that it does, but your headline implies that the results are conclusive.

     

    You--and the researchers - - completely ignored an important finding : even in that tiny sample size, 2 children were excluded for issues that clearly indicate intestinal malabsorption (celiac and iron deficiency). To find a rate of nearly 10% in an autism cohort is huge, as prevalence in the general population is recognized as around 1%. This suggests that a significant subset of autistic children DO benefit from a gluten - free diet.

     

    This is also supported by research showing a significantly higher rate of autism among children born to mothers with celiac disease.

     

    When researchers eliminate from their study the very children who are most likely to demonstrate the link being studied, that certainly calls into question the conclusions of that study.

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    Well, I have talked to two such parents of autistic children who would heartily disagree. Both have seen marked improvement in their child's behavior since putting them on a gluten-free diet. They would never abandon this approach because of research to the contrary. Dealing with it and publishing perhaps erroneous research are on far different planes.

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    Giving a snack weekly, which may contain gluten or casein, is a design failure because it will take months to years and a lot of other additional steps and therapies to heal damage from gluten. Follow the money. Who funded this study?

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    Guest Gene Ann

    Posted

    Giving a snack weekly, which may contain gluten or casein, is a design failure because it will take months to years and a lot of other additional steps and therapies to heal damage from gluten. Follow the money. Who funded this study?

    My thoughts exactly--poor design and show me the money. You can't switch food challenges after a few days because there are delayed reactions to consuming gluten plus it takes several weeks to get it out of your system. Trial design will determine your outcome. Figures don't lie, but liars can figure.

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    Guest Gillian

    Posted

    My thoughts exactly--poor design and show me the money. You can't switch food challenges after a few days because there are delayed reactions to consuming gluten plus it takes several weeks to get it out of your system. Trial design will determine your outcome. Figures don't lie, but liars can figure.

    So True!

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    Guest Jefferson

    Posted

    Giving a snack weekly, which may contain gluten or casein, is a design failure because it will take months to years and a lot of other additional steps and therapies to heal damage from gluten. Follow the money. Who funded this study?

    Who funded the study? National Institutes for Mental Health (Studies to Advance Autism Research in Treatment) NIMH U54 MH077397 and the National Center for Research Resources (NCRR) NIH UL1RR024160.

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    Guest Jefferson

    Posted

    An 18-week study of a tiny cohort - - less than a typical classroom size, with nearly 1/3 failing to complete the study - - cannot conclude ANYTHING about whether a gluten-free diet helps autistic children. Your article not only implies that it does, but your headline implies that the results are conclusive.

     

    You--and the researchers - - completely ignored an important finding : even in that tiny sample size, 2 children were excluded for issues that clearly indicate intestinal malabsorption (celiac and iron deficiency). To find a rate of nearly 10% in an autism cohort is huge, as prevalence in the general population is recognized as around 1%. This suggests that a significant subset of autistic children DO benefit from a gluten - free diet.

     

    This is also supported by research showing a significantly higher rate of autism among children born to mothers with celiac disease.

     

    When researchers eliminate from their study the very children who are most likely to demonstrate the link being studied, that certainly calls into question the conclusions of that study.

    "One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency." Clearly, a child with celiac disease must avoid gluten, and should not be subjected to a gluten challenge.

     

    Also, the point about the percentage of celiacs in the general population simply proves the researchers' point in excluding the child with celiac disease: Including a 10% celiac disease presence in a small group, when just 1% of the general population has the disease would skew the results, while excluding the child would have little or no impact on the results.

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    Guest Mirella

    Posted

    You call this a scientific study? This must be a joke. Get real anecdotal evidence like mine, a person with asperger who is actually functional only on a gluten-free diet. It's shameful that people refer to this as a "study". It's a disservice to society and to all those who are affected by autism.

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  • Related Articles

    Jefferson Adams
    Celiac.com 04/11/2012 - Studies on the gluten-free and/or casein-free (Gluten-free Casein-free) dietary intervention for children with autism spectrum disorders (ASDs) suggest that some children may positively respond to implementation of the dietary intervention.
    Other studies support the idea of using various factors, including gastrointestinal (GI) abnormalities and immune function to classify children diagnosed with ASDs
    Medical researchers Christine M. Pennesi, and Laura Cousino recently examined the effectiveness of the gluten-free, casein-free diet for children diagnosed with autism spectrum disorder. They are affiliated with the Department of Biobehavioral Health at the Pennsylvania State University in Pennsylvania, USA.
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    Celiac.com 12/21/2012 - Over the past several years, researchers have made substantial progress in understanding the causes of autism, which now afflicts about 1 in 88 children. However, very little news of this progress seems to have spread into popular consciousness, much of which continues to focus on the possible role of vaccines.
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    Jefferson Adams
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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
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    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com

    Jefferson Adams
    Celiac.com 04/16/2018 - A team of researchers recently set out to investigate whether alterations in the developing intestinal microbiota and immune markers precede celiac disease onset in infants with family risk for the disease.
    The research team included Marta Olivares, Alan W. Walker, Amalia Capilla, Alfonso Benítez-Páez, Francesc Palau, Julian Parkhill, Gemma Castillejo, and Yolanda Sanz. They are variously affiliated with the Microbial Ecology, Nutrition and Health Research Unit, Institute of Agrochemistry and Food Technology, National Research Council (IATA-CSIC), C/Catedrático Agustín Escardin, Paterna, Valencia, Spain; the Gut Health Group, The Rowett Institute, University of Aberdeen, Aberdeen, UK; the Genetics and Molecular Medicine Unit, Institute of Biomedicine of Valencia, National Research Council (IBV-CSIC), Valencia, Spain; the Wellcome Trust Sanger Institute, Hinxton, Cambridgeshire UK; the Hospital Universitari de Sant Joan de Reus, IISPV, URV, Tarragona, Spain; the Center for regenerative medicine, Boston university school of medicine, Boston, USA; and the Institut de Recerca Sant Joan de Déu and CIBERER, Hospital Sant Joan de Déu, Barcelona, Spain
    The team conducted a nested case-control study out as part of a larger prospective cohort study, which included healthy full-term newborns (> 200) with at least one first relative with biopsy-verified celiac disease. The present study includes 10 cases of celiac disease, along with 10 best-matched controls who did not develop the disease after 5-year follow-up.
    The team profiled fecal microbiota, as assessed by high-throughput 16S rRNA gene amplicon sequencing, along with immune parameters, at 4 and 6 months of age and related to celiac disease onset. The microbiota of infants who remained healthy showed an increase in bacterial diversity over time, especially by increases in microbiota from the Firmicutes families, those who with no increase in bacterial diversity developed celiac disease.
    Infants who subsequently developed celiac disease showed a significant reduction in sIgA levels over time, while those who remained healthy showed increases in TNF-α correlated to Bifidobacterium spp.
    Healthy children in the control group showed a greater relative abundance of Bifidobacterium longum, while children who developed celiac disease showed increased levels of Bifidobacterium breve and Enterococcus spp.
    The data from this study suggest that early changes in gut microbiota in infants with celiac disease risk could influence immune development, and thus increase risk levels for celiac disease. The team is calling for larger studies to confirm their hypothesis.
    Source:
    Microbiome. 2018; 6: 36. Published online 2018 Feb 20. doi: 10.1186/s40168-018-0415-6