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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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    FOOD INDUSTRY LEADERS PROPOSE NEW, BETTER FDA REGULATIONS FOR INGREDIENT LABELS


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    Celiac.com 07/24/2001 - In an effort to make food ingredient labels easier for everyone to understand, the Food and Drug Administration (FDA) is currently revising its food labeling laws. If Congress passes the current proposed legislation it will make life much easier for those with food allergies and intolerance. The Food Allergy Anaphylaxis Network (FAAN) spearheaded the yearlong label revision project and worked with 18 food companies to create voluntary guidelines for food labels that will help consumers avoid foods that could trigger an allergic reaction. The current recommended FAAN guidelines will identify the top eight allergens that cause 90 percent of food allergies, and will also avoid the use of technical food language in favor of easier to understand terms. For example, instead of using simply natural flavors on labels, the new labels would include the source of the ingredient: natural peanut or milk flavor. According to the guidelines common allergens such as peanuts, tree nuts like walnuts and pecans, fish, shellfish, eggs, milk, soy, and wheat should be clearly identified on all labels.


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    On a positive note, the new FAAN guidelines have been voluntarily adopted by certain companies within the food industry for the benefit of the allergic consumer. Numerous consumer complaints and calls from the 6-7 million people in the USA with food allergies, not to mention the fear of lawsuits from the 150-200 people that die each year from them, were certainly motivating factors for them taking this important step. In any case, any change in food labeling practice would have to be an improvement over the present situation. The new FAAN guidelines, however, amount to only recommendations at this point, although Kelloggs and General Mills and several other companies have already adopted them.

    Legislation incorporating the FAAN guidelines has been proposed by representative Nita M. Lowey (D-NY) , which, if passed, would make them federal law in the USA. To encourage a stronger version of the proposed new labeling laws, contact your representatives now about this important issue!


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    admin

    The House of Representatives has, once again, acknowledged celiac disease. It has passed the funding bill for the Department of Health and Human Services (HHS), which includes the NIH. The report language detailed below was included in that legislation. This language serves as guidance from Congress to the NIH to focus on certain issues (in this case celiac disease). A special round of thanks is due Representative Nita Lowey (D-NY) for her tireless efforts on behalf of the celiac community. Further thanks go out to Representative Ralph Regula (R-OH), Chairman, House Appropriations Subcommittee on Labor-HHS-Education, for his leadership on this important bill.
    We now wait to see what happens with the Senate version of the funding bill, and whether it is passed before the Congress adjourns later this month.
    HR 5006; Passed House on Sept. 9, 2004
    House Report. 108-636
    "Celiac disease.--The Committee commends NIDDK for recognizing the lack of understanding, and under-diagnosis of the genetic, autoimmune disorder, Celiac disease (celiac disease), and for including celiac disease in the NIH Consensus Development Program for 2004. Although readily diagnosed in European countries, it takes on average eleven years for Americans to be properly diagnosed. Delays in diagnosis place individuals at risk for osteoporosis, anemia, miscarriages, and small bowel cancer. Current evidence demonstrates that celiac disease is the most common genetic disorder in the world, with a treatment-- strict, gluten-free diet--that can be managed almost exclusively by the individual, or family. Education about celiac disease is needed for health care professionals and patients. The Committee encourages NIDDK to coordinate informational and educational programs directed at health professionals, patients and the public to raise awareness and understanding about celiac disease, and the need for early diagnosis."
    A copy of the report is available at: http://thomas.loc.gov/cgi-bin/cpquery/R?cp108:FLD010:@1(hr636):
    Allison Herwitt
    Co-Chair, Legislative Project
    American Celiac Task Force

    admin

    Celiac.com 08/31/2006 - On July 27, 2006, Representative Nita Lowey (D - NY) introduced H.Con.Res. 457, which, if passed, would recognize the month of May as national “Celiac Awareness Month.” The bill also requests an increase in federal funding for celiac disease research. Rep. Lowey was the driving force in Congress in support of the Food Allergen Labeling and Consumer Protection Act that passed in 1994, which requires food manufacturers to list the top eight allergens on their products’ ingredient labels.
    Celiac.com supports Rep. Lowey in her efforts to raise celiac disease awareness, and asks you to get involved. Please contact your representatives in congress and ask them to support H.Con.Res. 457—to do so simply visit: http://capwiz.com/celiac/issues/bills/?bill=8945821

    Gryphon Myers
    Celiac.com 06/05/2012 - Even though public awareness of celiac disease is growing thanks to the recent surge in popularity of gluten-free dieting, gluten-free is still an uncontrolled term. The FDA proposed a < 20ppm gluten rule for gluten-free labeling in 2007 and reopened the proposed rule for comment last August, but many feel that too little is being done too slowly to control labeling of gluten content in foods.
    In a move that is raising some eyebrows, Tim Lawson, a sufferer of celiac disease and CEO and founder of New Grains Gluten Free Bakery is suing Utah Senator Orrin Hatch for obstructing FDA progress on the issue. Lawson, who feels the plight of the roughly nine million celiac disease sufferers in America, asserts that more funding should be allocated to expedite the FDA's regulation process of gluten-free labeling.
    Whether or not his concern is valid, it is doubtful that such a lawsuit will hold up in court. Lawson is essentially suing senator Hatch for refusing to exert his influence to raise funds for the FDA. Hatch is certainly not the only senator guilty of such inaction, so it is unclear why Lawson would single him out.
    According to Hatch's spokesman, Matthew Harakal, “... there is no legitimate cause of action against a legislator for failing to appropriate taxpayer dollars to address any one constituent's specific, individual desires.”
    Paul Cassell, a law professor at the University of Utah also comments, “Anybody could allege that, as a result of a member of Congress not voting one particular way they've then suffered some kind of adverse effect...” It is hard to hold Hatch liable for any hardship suffered by celiacs when, as Cassell suggests, literally every action taken by any American senator works against the favor of some group or another.
    At the very least though, Lawson is making it known that he, and many celiac disease sufferers are unhappy with how gluten-free labeling is currently handled in America. Even if it is doubtful that he will win his lawsuit, he has likely gotten Hatch's attention, and sometimes that is all it takes to get things done.
    Source:
    http://www.sltrib.com/sltrib/politics/54142724-90/disease-dying-fda-free.html.csp

    Jefferson Adams
    Celiac.com 09/12/2013 - Good news for consumers of gluten-free foods and other products: The FDA's new standards for the labeling of gluten-free food and other products apply to all foods and products labeled gluten-free, including dietary supplements and vitamins.
    The FDA rules state that any product declaring the contents to be "gluten-free," "no gluten," "free of gluten" or "without gluten," must meet all parts of FDA's gluten-free definition, including the requirement that the food contains less than 20 parts per million of gluten.
    People with celiac disease who consume gluten from wheat, rye, or barley risk gradual damage to the intestines, leading to poor absorption of vitamins and minerals and leading to a host of other health problems, including nutritional deficiencies, osteoporosis, miscarriages, and cancer," according to Virginia Cox, Associate Commissioner of FDA's Office of External Affairs.
    Creating uniform rules and conditions for the use of the term 'gluten-free' in the labeling of foods and other products is "necessary to ensure that individuals with celiac disease are not misled and are provided with truthful and accurate information with respect to foods so labeled, " according to the text of the final rule, which was published last week in the Federal Register.
    FDA projects the new requirements will yield annual health benefits of roughly $110 million, compared to estimated annual costs (related to testing and relabeling) of $7 million.
    Manufacturers of gluten-free foods and products will have one year to comply with the FDA's labeling requirements.
    Source:
    http://www.naturalproductsinsider.com/news/2013/08/fda-gluten-free-definition-applies-to-dietary-sup.aspx

  • Recent Articles

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764