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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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    CODEX ALIMENTARIUS EXPLAINED - EUROPEAN GLUTEN-FREE STANDARDS BY FREDERIK WILLEM JANSSEN


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    This article comes to us from Frederik Willem Janssen, Zutphen, The Netherlands, e-mail: teizjanz@PI.NET. If you have specific questions about it, please contact him directly.


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    The Codex Alimentarius provides the gluten-free standard for European food manufacturers. This article will deal with foods that are officially labeled as gluten free.

    In the European Union there is a directive on foods for special dietary uses (89/398/EEG), and this directive is the basis for all national legislation in the countries of the European Union. Though the directive deals with gluten-free foods there is no assigned limiting level of gluten for gluten-free food yet, so it is up to the national regulatory bodies of the member states to set their own level. There is however, an international body handling these matters: Codex Alimentarius.

    Codex Alimentarius is a Geneva-based International organization jointly run by the World Health Organization and FAO , and its aim is to establish worldwide standards for foods in the broadest sense. Food legislation in many countries is based on Codex Standards, although it is not mandatory to implement them in all cases. There is a Codex committee producing standards on food labeling, on hygiene, on composition etc., etc. There is a committee on Foods for Special Dietary Uses (FSDU) and ... there is a Standard on gluten-free Food!

    The oldest Standard dates from 1981, and it says that foods may be labeled as gluten-free only if the nitrogen content of the protein derived from wheat is less than 50 mg N/100 gm on dry matter, which may be equivalent to about 20-30 mg gliadin in wheat starch. The calculation is quite complicated by the fact that most of the protein in wheat starch is starch granule protein and not gluten.

    There is a new Codex Standard in preparation, and a proposal to set the limiting level of gluten to 200-mg gluten/kg (20-mg/100 g) gluten-free food on dry matter. If we assume that half of the gluten is gliadin, this equals 10-mg gliadin/100 g o.d.m., so the level has gone down by a factor two in comparison to the old standard. If accepted, the new standard will be valid for end products and not for raw materials. In my previous posting I already mentioned that there are comments on the proposal from Sweden (

    One of the reasons why the level in the Standard has not yet been effected (the proposal has been dealt with already two years ago) is that there is no validated analytical method (ring-tested) available to check compliance to this level. Though it might look rather simple to analyze gluten, it is generally done with an Enzyme Linked Immuno Sorbent Assay - ELISA, it is in fact very tricky, and especially as the term gluten is very imprecise. Gluten is a mixture of gliadin and glutenin - each composed of several sub-fractions - and its composition with respect to sub-fractions is cultivar dependent. There is also an effect on the recovery caused by the heat processing of the food, and although excellent work has been done by Dr Skerrit of CSIRO in Australia to circumvent this problem (he designed a method based on omega gliadin, which is the most heat stable gliadin fraction), there is still a feeling that this method still needs to be improved. Remember that agencies charged with enforcement of food laws must be able to bring suits against producers of non-complying gluten-free foods. So analytical methods need to be robust and accurate.

    Codex Alimentarius bases its standard on scientific facts, and thats why there is no zero tolerance. There is simply no scientific evidence that this is required (at least there is no concordant view among scientists about the maximum tolerable gluten intake), and it is reasoned that any unduly reduction in the permissive level will reduce the number of gluten-free food available unnecessary.

    Though Codex Alimentarius has been criticized in the past for being a food-producer driven body it is still the only world-wide forum for food standards, and its role within the framework of the GATT and WTO makes its work of sterling importance in settling trade disputes. In 1993 the National Food Alliance (UK NGO) produced a report titled Cracking the Codex. This report stated that even though the voting in Codex is nationwide, and quite often by consensus, there is a large impact of the producer lobby, especially in the preliminary stages of decision making.

    Even though there is no implemented standard in national legislation many countries will stick to the Codex Standard. The conclusion is that in many countries food labeled as gluten free will almost definitely contain gluten. As the regulatory agencies of most countries will not press charges against producers of gluten-free foods if the level is below the Codex Standard limit (though, as said, some countries may have lower regulatory levels). Codex Standards still do not have the status of national laws.


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    Guest Dr. John

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    Fascinating.

     

    A truly democratic way to approach the issue. While most may not have heightened genetic promoters and can thereby tolerate higher levels, those who have, by unfortunate circumstances, a lesser ability to tolerate, will continue to walk through the minefield affectionately termed "food."

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    admin

    This 11/29/98 update comes to us from Frederik Willem Janssen, The Netherlands: fwjanssen@WXS.NL
    About a week ago I promised to post info about agenda item 4 (Gluten Free Food) as dealt with at the meeting of Codex Alimentarius NFSDU (Nutrition and Food for Special Dietary Uses) which was held in September in Berlin Germany. As usual this meeting starts on Monday and continues till Wednesday, Thursday is a day off (time for the secretariat to draw resolutions) and on Friday these draft resolutions are discussed. Unfortunately I wasnt able to stay till Friday. However, the resolutions as discussed on Friday were handed to me afterwards however and I pass them with some corrective changes accepted during that day. For those of you who have no interest in reading this clerical stuff I summarize:
    The proposed limits (20) for food gluten-free by nature and 200 for food rendered gluten-free will stay between square brackets (so no decision has been made). The same holds for oats, awaiting further toxicological data about its celiac-toxicity it should be considered as toxic. The main obstacle for finalizing the standard is the lack of an appropriate method of analysis. Progress has been made but still not to that extent that enforcing agencies can be satisfied. Maybe we will see some progress in the next 2 years!
    Proposed Revisions: Alinorm 99/26, Draft Revised Standards for Gluten-Free Foods (Agenda Item 4):
    31. The Committee recalled that the Twenty-second Session of the CAC adopted the Proposed Draft Standard for Gluten-Free Foods at Step 5 while recommending that comments on methods of analysis and on amounts of gluten in gluten free foods should be taken into account when finalizing the standard. The Committee noted that without an appropriate method of analysis it was not scientifically justified to advance the Draft further.
    32. The Delegation of Sweden introduced their recent study on gluten determination in foods by an enzyme immunoassay using a monoclonal antibody against omega-gliadin (CRD 33), noting that the detection limit of the method (ref. AOAC 991.19) was about 20 - 40 ppm and the repeatability was acceptable. Some Delegations pointed out that the method presented raised some technical concerns: it was performed only on wheat and due to this, uncertainty exists as regards its applicability to other cereals. There were also concerns about the reproducibility of the method. It measured only omega-gliadin and other gliadins should also be taken into account. The need of further improvement was raised. Spain expressed concern about setting units where no method of analysis is available and not all the different types of gliadins can be detected.
    33. The Committee noted that in some cases a proprietary method was the most specific way to detect an analyte, such as in the case of gluten detection. Since Codex had not endorsed these techniques as methods of analysis of Codex, the CCMAS (Codex committee on Methods of Analysis and Sampling) should consider this problem.
    34. Several delegations suggested that the Committee should ask FAO and WHO to convene an Expert Consultation to address the issue of the level and the method of analysis. Other delegations proposed to consult the CCMAS on this issue. The Secretariat informed the Committee that on the request of the CCFL (Codex committee on Food Labeling), JECFA (Joint expert committee on Food Additives) was prepared to consider the question of hypersensitivity at its 53rd Session (June 1999) and the intolerance to gluten might be discussed in this context. The Secretariat recalled that the role of the CCMAS was to endorse methods of analysis proposed by specialized Committees and the CCNFSDU needed to specify the method.
    35. Several delegations and the Observer from the AAC (Association des Amidonneries Cooperative) proposed that the discussion of this draft should be adjourned until a reliable method of analysis became available. Other delegations were in favor of continuing work on it in order to meet the urgent need of the patients suffering from coeliac disease and proposed to advance the proposed draft for a single level of 200 ppm to step 8. Taking into account the absence of an appropriate and accurate method of analysis, it was proposed to maintain the gluten free level at 200 ppm for all foods and to include a new preamble suggesting the a revision of the standard when a method of analysis or new scientific evidence became available.
    36. While concerning the proposed definition of gluten-free foods, several delegations wanted to point out that the current approach was confusing and misleading the consumer and that the level should be uniform for all foods. However, other delegations and the Observer from AOECS stressed the need for two levels with regard to the naturally gluten free foods and the products which had been rendered gluten free. The Committee noted that the proposed term gluten-free might mislead the consumer and recognized that the term low or reduced in gluten should be considered.
    37. The Observer from AOECS, supported by some delegations, expressed the view that the level of 200 ppm for all gluten-free foods was too high to protect coeliacs and the gluten level should refer only to the end product for better consumer protection.
    38. The Delegation of Finland proposed to remove the oats from the list as scientific studies showed that oats can be tolerated by celiacs and allows to provide dietary fibers for coeliacs. The Observer from AOECS, supported by some delegations, stressed that the square brackets on oats should be removed as oats might have negative impact on the health of coeliacs and that the medical experts had not reached consensus on this issue.
    39. The Committee recognized that the development of reliable method of analysis of gluten was the key point of this discussion and that the development of the method should be encouraged by all means. Status of the Draft Revised Standard for Gluten-Free Foods
    40. The Committee agreed to leave the text of the draft as it was in CX/NFSDU 98/4 and to return it to Step 6 for further consideration. The Committee also agreed that the question regarding the proprietary techniques should be raised to the CCMAS as a general matter.
    The following documents were discussed during the meeting: CX/NFSDU 98/4 - Add 1 (Comments from Australia, Spain, UK, AAC, ISDI); CX/NFSDU 98/4 - Add 2 (AOECS); CRD 3 (Uruguay, ISDI); CRD 13 (USA); CRD 21 (Spain); CRD 33 = CRD 42 (Sweden); CRD 44 (India); CRD 51 (Norway).

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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)?
    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