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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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    GENE CARRIES INCREASED RISK OF REFRACTORY CELIAC DISEASE


    Jefferson Adams

    Celiac.com 01/03/2008 - It’s pretty well documented that HLA-DQ2 and HLA-DQ8 sereotypes are closely associated with celiac disease. Patients who test positive for both sereotypes are at much greater risk for developing celiac disease. Celiac disease is closely associated with the presence of HLA-DQ2 and HLA-DQ8, and has also been tied to variations in the MY09B gene on the 19th chromosome.


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    Homozygosity is the condition of having two identical genes, of many possible combinations, on a single chromosome site.  

    HLA-DQ2 homozygosity means that a person has inherited the HLA-DQ2 gene from both parents.

    In addition to having a much higher risk of developing celiac disease in general, people with HLA-DQ2 homozygosity have a much higher risk of developing refractory celiac disease type II, and enteropathy-associated T-cell lymphoma. Refractory celiac disease is a rare type of celiac disease in which a gluten-free diet fails to eliminate symptoms and to reverse celiac-associated damage. Eneteropathy-associated T-cell lymphoma is a type of cancer that often develops in people with advanced intestinal damage such as commonly found in celiac patients.

    A team of Dutch doctors recently set out to determine if the presence of the MY09B gene carries an elevated risk of refractory celiac disease type II, and enteropathy-associated T-cell lymphoma.

    The research team evaluated 62 people who were confirmed to have both refractory celiac disease type II and enteropathy-associated T-cell lymphoma. They also evaluated 421 people with simple celiac disease, along with a control group of 1624 people without celiac disease.

    The team conducted genotyping of MY09B along with molecular HLA-DQ2 typing on all of the patients.

    The tests showed that one nucleotide variation in MY09B was substantially different in the refractory celiac group than in either the simple celiac or the control group.

    The allele in question is known as the rs7259292 T allele, and the results of the tests showed that it occurs far more frequently in patients with refractory celiac and enteropathy-associated T-cell lymphoma than in either the control group or the group with simple celiac disease. In fact, the halpotype that carries the rs7253292 T allele occurs in 11% of the patients with refractory celiac disease type II, and enteropathy-associated T-cell lymphoma compared with just 2% of the control group and 3% or patients with regular celiac disease.

    Additionally, the results showed that patients who carry the MY09B rs7259292 allele or who showed HLA-DQ2 homozygosity faced similarly high risk levels for refractory celiac disease type II, and enteropathy-associated T-cell lymphoma compared to patients with simple celiac disease.

    The results did not show any connection or interaction between the MY09B rs7259292 allele and HLA-DQ homozygosity.

    Clinical Gastroenterology and Hepatology; 2007: 5(12): 1399-1405


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    Guest Melissa Drescher

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    Very well written, almost completely understandable by a lay person. Great info, a little scary though.

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    Guest ANN MAUREEN SURRA

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    I wish I could send it to my second son. My oldest son has celiac disease. My second son has lymphoma.

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    Guest jeff schulz

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    I agree with all the above comments...very informative and yes a little bit scary--yikes!!

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    Guest Gayle Gaynor

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    Very informative. My 11 year old grand daughter was diagnosed with refractory celiac disease. She has the HLADQ2 gene. I do research every day and I always end up coming back to your site for accurate up to date information. Thank you.

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    Guest Elinor Skeate

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    I have celiac, and so do my son and my daughter, so eager to see new information about celiac-related things.

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    admin

    Gut 2005;54:54-59. Celiac.com 01/20/2005 - A link between untreated celiac disease and a rare enteropathy-type T-cell lymphoma (ETTL) has been well established by several studies. According to Dr. Karin Ekstrom Smedby of the Karolinska Institute in Stockholm and colleagues, there is also an increase in the prevalence of other types of lymphomas in those with celiac disease, such as B cell and non-intestinal lymphomas. In their study the researchers reviewed and reclassified 56 cases of malignant lymphomas that occurred in 11,650 hospitalized celiac disease patients in Sweden. The observed numbers of lymphoma subtypes were compared with those expected in the Swedish population. The researchers discovered that a majority of the lymphomas were not intestinal T-cell lymphomas, but were B-cell non-Hodgkin lymphoma (NHL). In addition, 44% of the patients with B cell NHL had a history of other autoimmune/inflammatory diseases. As expected, the relative risks for T-cell NHL and primary gastrointestinal lymphomas were markedly increased. According to the researchers: "Most lymphomas complicating coeliac disease are indeed related to the disease and are not of the ETTL-type. There was a remarkable aggregation of autoimmune/inflammatory disorders, female sex, coeliac disease, and B cell lymphoma."

    Jefferson Adams

    Celiac.com 08/14/2007 - It has long been documented that there is a connection between celiac disease and neoplasm. In fact, in the 1960s, a population-based study reported a 100-fold increase in risk of non-Hodgkins lymphoma in patients with celiac disease.
    It has also been shown that people with celiac disease are at greater risk for developing small bowel adenocarcinoma. Also, studies have shown an increased mortality rate from cancer among celiac patients, and there is mounting, but not conclusive evidence that a gluten-free diet provides a measure of protection against the development of malignancies. Strangely, several studies have documented a lower risk of breast cancer among celiac patients.
    However, to date, very little is known about the associated factors, particularly with regard to the development of gastrointestinal malignancies and their corresponding risk levels. A study recently published in BMC Gastroenterology documents the efforts of a team of Italian doctors to evaluate the risks of developing various types of gastrointestinal neoplasms associated with delayed diagnosis of celiac disease and the resulting consumption of gluten over time.
    The team was made up of doctors Marco Silano; Umberto Volta; Anna Maria Mecchia; Mariarita Dessì; Rita Di Benedetto; and Massimo De Vincenzi. The team studied a group of 1,968 celiac patients from 20 GE referral centers between 01 January 1982 & 31 March 2005.
    Study Shows Higher Rates of Gastrointestinal Malignancy that Increase with Age in Patients with Delayed Diagnosis of Celiac Disease
    According to the results of the study celiac patients have an increased risk of developing cancer which corresponds directly with the age of diagnosis of celiac disease. This increased risk applies to gastro-intestinal malignancies. An accurate screening for tumors should be performed in patients diagnosed with celiac disease in adulthood. On average, the mean age of celiac patients who developed a neoplasm, either sooner or later, was 47.6 +/- 10.2 years, compared with 28.6 =/- 18.2 years in those did not develop neoplasm.
    BMC Gastroenterology 2007, 7:8 (9 March 2007)
    health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

    Jefferson Adams
    Celiac.com 02/28/2011 - Celiac disease is associated with an increased risk of lymphoma and small bowel malignancy. Colorectal cancer is the most common gastrointestinal cancers in the United States, but most studies have not found no higher rates of colorectal cancer for people with celiac disease, compared with rates in the general population.
    The results of these studies might in fact be describing a true null relationship between celiac disease and colorectal cancers. However, the results may also be influenced by better health-care among patients with known celiac disease, particularly among those with gastroenterologists who are likely to perform screening colonoscopy.
    Because colonoscopy can decrease the incidence of colorectal cancer via removal of precancerous adenomas during the procedure, and because gastroenterologists usually follow such patients, a possible underlying increased risk of colorectal cancer in patients with celiac disease may remain undetected.
    The team of researchers sought to assess the underlying risk of colorectal cancer in patients with celiac disease by quantifying the relative prevalence of precancerous colorectal adenomas in these patients compared with patients without celiac disease in a cohort of individuals undergoing colonoscopy. The team included B. Lebwohl; E. Stavsky; A. I. Neugut; and P. H. R. Green.
    To isolate the association of celiac disease with colorectal adenomas, the team controlled for three important predictors of adenoma detection on colonoscopy: endoscopist, patient age and patient gender.
    They then identified all celiac disease patients who underwent colonoscopy at their institution during a 44-month period. They matched each celiac disease patient by age, gender and endoscopist, with non-celiac control subject.
    The team then compared the adenoma rates between these groups, and used multivariate analysis to assess the independent association of celiac disease with adenomas.
    The team isolated 180 patients with celiac disease and 346 control subjects. A total of 13% of celiac disease patients and 17% of controls (P = 0.20) showed at least one adenoma.
    Multivariate analysis showed that age (OR per year 1.04, 95% CI 1.02–1.07) and male gender (OR 2.33, 95% CI 1.36–3.98) were both associated with higher rates of adenoma.
    However, there were no higher adenoma rates among people with celiac disease (OR 0.75, 95% CI 0.41–1.34).
    The study provides strong support for the notion that celiac disease is not associated with higher rates of colorectal cancer.
    They conclude that the lack of increased rates of colorectal cancer is related to a true average risk of colorectal neoplasia, rather than reflecting higher colonoscopy and associated polyp removals among people with celiac disease.
    Source:

    Alimentary Pharmacology & Therapeutics 2010;32(8):1037-1043.

  • 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