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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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    DID A MISGUIDED GLUTEN-FREE DIET KILL BELGIAN INFANT?


    Jefferson Adams


    • Two Belgian parents face charges that an alternative gluten-free diet caused their son to die of malnutrition.


    Celiac.com 05/22/2017 - After their seven-month-old baby died weighing less than 10 pounds, a mother and father in Beveren, Belgium, are standing trial on charges that they starved the child by negligently providing an alternative gluten-free diet, with no medical supervision.


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    The couple, who ran a natural food store, put their son Lucas on an alternative gluten-free, lactose-free diet, which included quinoa milk, despite doctors describing it as unsuitable for developing infants.

    According to child gastroenterologist Elisabeth De Greef, from the University Hospital of Brussels, feeding quinoa milk and other such foods to infants is absolutely wrong. She says that "These kinds of milk, which you can buy in a supermarket, do not contain the necessary proteins, minerals and vitamins. They are not adjusted to infants and thus unsuitable."

    Lucas' mother said in a statement that "Lucas had an eating disorder. He got cramps when he was fed with a bottle and his parents tried out alternatives. Oat milk, rice milk, buckwheat milk, semolina milk, quinoa milk." These are all products the couple sold at their store.

    At the beginning of the trial, public prosecutors blamed the couple for their son's death. Prosecutors claim that the couple made their "own diagnosis that their child was gluten intolerant and had a lactose allergy," without any input from doctors. In fact, prosecutors allege that the couple kept the child away from doctors altogether. "Not a single doctor had a dossier about Lucas and child protection services did not know about them," said the public prosecutor.

    The infant's diet, said prosecutors, "led to him being less than half the expected weight for a boy his age," at the time of his death in June 6, 2014. An autopsy showed that Lucas' stomach was totally empty at the time of his death. Prosecutors say the parents did not seek medical attention, even when Lucas was gasping for air in the days before he died.

    When Lucas was in the final throes of starvation, and the parents finally did take action, prosecutors say that they compounded the child's medical crisis by driving to a homeopathic doctor on the other side of the country, instead of going to the nearest hospital.

    In their defense, Lucas's father, claimed the couple never took Lucas to a doctor "because we never noticed anything unusual." In fact, the parents believed Lucas had an eating problem, says the couple's lawyer.

    Under questioning, Lucas' tearful mother said that the couple never "wished for the death of our son." She also stated that Lucas ometimes…gained a little weight, sometimes he lost a little."

    Yet according the public prosecutor the actions by the couple amount to "intentionally denying food" to the boy. For now, the trial in this tragic case continues, with a verdict set for June 14.

     

    Read more: Metro.co.uk


    Image Caption: Two parents in face charges that their son died because they fed him an alternative gluten-free diet. Photo: CC--Dr Les (Leszek - Leslie) Sachs
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    Guest Amy Mitchell

    Posted

    What killed the baby was lack of nutrients, not a GFD. Babies should have breast milk, unless a doctor says otherwise. Foolish parents killed the baby.

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    Guest Casey

    Posted

    Let's be very clear: this tragedy has nothing to do with a gluten-free diet. Two mentally disturbed individuals starved a child to death based on crackpot theories of nutrition and outright ignorance of normal infant development. Combine that with a distrust of conventional medicine and the child was doomed. The mother's statement says it all: "Lucas had an eating disorder" - infants don't get eating disorders. He may have had colic, or just plain old gas, both of which are common for infants. Instead of seeking advice from a doctor, nurse, or even an experienced mother, they ignored his nutritional needs and starved him with ignorance. I hope they serve serious prison time for his suffering and death. And I wish the media (this site included) would stop referring to the issue in this case as being a "Gluten-free Diet" - it was a nutrition-free diet that killed the child.

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    Guest Paula

    Posted

    Breast milk is gluten-free, formulas are gluten-free, and yet even this site asks the question if gluten-free diet could have killed this boy? And semolina usually refers to wheat, so how sure are you his diet was even gluten-free? It was nutrient deficient vegan diet and his parents ignorance that killed him.

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    Guest annie

    Posted

    Hell has a special place for people like this - people who would deliberately starve a child to death.

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    Guest Jenelle

    Posted

    Let's be very clear: this tragedy has nothing to do with a gluten-free diet. Two mentally disturbed individuals starved a child to death based on crackpot theories of nutrition and outright ignorance of normal infant development. Combine that with a distrust of conventional medicine and the child was doomed. The mother's statement says it all: "Lucas had an eating disorder" - infants don't get eating disorders. He may have had colic, or just plain old gas, both of which are common for infants. Instead of seeking advice from a doctor, nurse, or even an experienced mother, they ignored his nutritional needs and starved him with ignorance. I hope they serve serious prison time for his suffering and death. And I wish the media (this site included) would stop referring to the issue in this case as being a "Gluten-free Diet" - it was a nutrition-free diet that killed the child.

    Excellently stated Casey. There is no "gluten milk" to which you need a Gluten Free Milk alternative!!! They are a necessary diet for those of us who cannot eat wheat/gluten when this story is about alternative MILKS that two negligent parents fed their infant instead of the proper nutrition he needed. This is not about gluten free. It's misleading and inappropriate for the focus of the story. It's these kinds of horrible stories that makes people think that my required GFD is a "fad" or a "lifestyle choice" instead of what I must do to avoid getting desperately ill and destroying my intestines. God rest the soul of that sweet little boy. He tragically suffered starvation, malnutrition and neglect for so long. It's sickening. Gluten Free had nothing to do with it.

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    Maybe not a gluten free diet did it per se, but certainly it cant be denied the whole gluten free hysterical fad promulgated by supermarkets stocking shelf after shelf of "gluten free" products , including milk, and juice, that a very tiny percentage of people need, IS a large part of the lack of nutrition problem...

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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)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    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