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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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    DIAGNOSING CELIAC DISEASE AND LYMPHOCYTIC ENTEROPATHY BY PARALLEL SEROLOGY AND HISTOPATHOLOGY


    Jefferson Adams

    Celiac.com 08/12/2011 - Although serological analysis is used in diagnosing celiac disease, histopathology is regarded as most reliable.


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    A team of researchers set out to assess the clinical, pathological and serological spectrum of celiac disease in a general population via prospective study (Kalixanda study).

    The research team included Marjorie M. Walker, Joseph A. Murray, Jukka Ronkainen, Pertti Aro, Tom Storskrubb, Mauro D’Amato, Brian Lahr, Nicholas J. Talley, and Lars Agreus.

    For their study, the team evaluated a random sample of 1000 adults from the general population by upper endoscopy, duodenal biopsy, and serological analysis of tissue transglutaminase (tTg) levels. They screened samples that were tTg+ for endomysial antibody (EMA) levels.

    The baseline value for celiac diagnosis was villous atrophy with 40 intraepithelial lymphocytes (IELs)/100 enterocytes (ECs).

    The team found 33 subjects with tTg+ and 16 with EMA+. Their histological analysis showed 7/1000 subjects (0.7%) with celiac disease, all of whom showed tTg+ and 6 of 7 of whom showed EMA+.

    Another 26 subjects showed tTg+, 7 of 26 showing EMA+. The team then addressed these cases with a second quantitative pathology study, this one a nested case-control design, that used a celiac diagnosis baseline of 25 IELS/100 ECs. Under this criteria, all 13 samples that were tTg+ and EMA+ had more than 25 IELs/100ECs.

    A total of 16 subjects (1.6%) showed serological and histological evidence of gluten-sensitive enteropathy. The team quantified IELs in duodenal biopsy samples from 500 seronegative individuals. A total of 19 (3.8%) of those subjects had >25 IELs and lymphocytic duodenosis (LD).

    A celiac diagnosis level of ≥25 IELs/100 ECs was strongly associated with serological indicators of celiac disease, while a higher IEL threshold missed half of cases.

    Quantification of tTg is a sensitive test for celiac disease, and diagnosis can be confirmed by observation of ≥25 IELs/100ECs in duodenal biopsy. Lymphocytic enteropathy in the form of both celiac disease and Lymphocytic duodenitis, is common, occurring in about 5.4% of the general population.

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    admin

    Celiac.com 2/13/2003 - This new study emphasizes the importance of following a strict gluten-free diet, and getting regular follow-up biopsies after your diagnosis. It also speaks to the need to discover whether or not you may have additional food intolerance, such as to cows milk (casein), soy, corn, etc., as some of these can also cause intestinal damage similar to that of celiac disease. -Scott Adams

    Lee SK, Lo W, Memeo L, Rotterdam H, Green PH.
    Gastrointest Endosc 2003 Feb;57(2):187-91
    Current affiliations: Department of Surgical Pathology and Medicine, Columbia University College of Physicians and Surgeons, New York, New York.
    BACKGROUND: The diagnosis of celiac disease requires characteristic histopathological changes in an intestinal biopsy with clinical improvement in response to a gluten-free diet. Endoscopy with procurement of biopsy specimens is often performed to document response to the diet, but there are little data on the appearance of treated celiac disease. This study examined the endoscopic and histopathological appearance of the duodenum of patients with celiac disease whose diet was gluten-free.
    METHODS: A cohort of 39 adult patients (mean age 52 years, range 20-74 years) with biopsy-proven celiac disease was retrospectively reviewed. All had responded clinically to a gluten-free diet that they had maintained for a mean of 8.5 years (range 1-45 years). The endoscopic and histopathological appearances of the duodenal mucosa were reviewed. Blinded review of the diagnostic (initial) and post-treatment biopsy specimens was also performed to assess response of individual patients to the diet.
    RESULTS: The endoscopic appearance was normal in 23%, reduced duodenal folds were present in 46%, scalloping of folds in 33%, mucosal fissures in 44%, and nodularity in 33%. There was more than 1 abnormality present in 46%. Histology was normal in only 21%. The remainder had villous atrophy (69% partial, 10% total). Paired (diagnostic and follow-up) biopsy specimens were reviewed blindly for 12 patients. The mean (SD) intraepithelial lymphocyte count fell from 61 (22) to 38 (17) (normal
    CONCLUSIONS: Despite a good clinical response, abnormal endoscopic and histopathological appearances persist in the majority of patients with celiac disease treated with a gluten-free diet.
    PMID: 12556782

    admin
    Scand J Gastroenterol. 2003 Jul;38(7):727-31.
    Effectiveness of the sorbitol H2 breath test in detecting histological damage among relatives of coeliacs.
    Tursi A, Brandimarte G, Giorgetti GM, Inchingolo celiac disease.
    Dept. of Emergency, L. Bonomo Hospital, Andria (BA), Italy.
    Celiac.com 08/07/2003 - An Italian study conducted by Dr. L. Bonomo and colleagues and published in the July 2003 edition of Scandinavian Journal of Gastroenterology concludes that A significant proportion of coeliacs may be missed if relatives are screened by serology only, while the efficacy of sorbitol H2-BT in screening relatives is confirmed. This study confirms that neither a breath test nor serology can replace intestinal biopsy, which remains the gold standard for the diagnosis of celiac disease, thus confirming the continued importance of performing biopsies for diagnosing celiac disease. The studys goal was to determine the diagnostic capabilities of serological tests (antigliadin (AGA), antiendomysium (EMA) and anti-tissue transglutaminase (anti-tTG)) and sorbitol H2 breath test (H2-BT) in the detection of celiac disease in first-degree relatives. The study screened 111 first-degree relatives of 37 celiac families using both test methods to determine candidates for small bowel biopsy. First-degree relatives with abnormal test results underwent a small bowel biopsy, as did those with negative serological and H2 breath test results who had clinical complaints or suspected that they may have celiac disease.
    The biopsy results were expressed using the Marsh classification system, and celiac disease was diagnosed in 49 of the 111 screened relatives of celiacs, or in 44.14%. A breakdown of the results is as follows: 5 showed Marsh IIIc, 8 Marsh IIIb, 16 Marsh IIIa, 13 Marsh II and 7 Marsh I lesions. 19 relatives showed the classical form of celiac disease, 20 showed the sub-clinical form, and 10 showed the silent form. The serological test results indicated an overall positivity of only 36.73%, with strong positive results only in those with severe intestinal damage and Marsh IIIb-c lesions. The sorbitol H2-BT breath test results showed an overall positivity of 83.67%, and showed strong positivity in patients with slight histological damage (Marsh I-IIIa).

    Jefferson Adams
    Celiac.com 11/18/2009 - Clinical studies of adults with celiac disease have shown that duodenal mucosal histopathological changes may be patchy, and the diagnostic value of duodenal bulb biopsies is thought to be limited. Very little data exist regarding how this applies to children with celiac disease.
    A team of researchers recently set out to assess the prevalence of variable biopsy findings and duodenal bulb involvement in children with celiac disease, as well as its association with clinical parameters.
    The research team was made up of Dascha C. Weir MD, Jonathan N. Glickman MD, Tracey Roiff, Clarissa Valim MD, ScD, and Alan M. Leichtner MD. The team analyzed the prevalence of variable biopsy findings and duodenal bulb involvement in children with celiac disease, together with its association with clinical parameters.
    They looked at a total of 198 consecutive cases of celiac disease diagnosed at the Children’ s Hospital from 2001 to 2005. The team scored all biopsies using the Marsh criteria applied by a pathologist blinded to the clinical data.
    The researchers categorized mucosal changes as 'focal' if changes consistent with celiac disease and normal mucosa were found within a single biopsy fragment. They defined 'patchiness' as variation of at least one Marsh grade between separate fragments in a biopsy set. The median patient age was 9.3 years; 62% were female.
    The researchers took more than 700 biopsy samples, an average of 3.6 per patient. In 101 cases, they took biopsy sample from both the duodenal bulb and the second portion of the duodenum.
    They classified 36 biopsy samples (18%) as focal. They classified 105 samples (53%) as 'patchy', with at least 1 normal biopsy fragment was present in 71 cases (36 %). In 10 cases, researchers made reliable diagnosis only via bulb biopsy. There was no association with the clinical features examined.
    The research team concluded that duodenal involvement in childhood celiac disease is often patchy and may show variable severity even within a single biopsy fragment not reliably predicted by clinical characteristics. To maximize diagnostic yield, they recommend taking multiple endoscopic biopsies, including the duodenal bulb, in suspected cases of pediatric celiac disease.
    Source:
    Am J Gastroenterol  6 October 2009; doi: 10.1038/ajg.2009.557


    Jefferson Adams
    Celiac.com 04/23/2010 - HLA-DQ2+ patients already following a gluten free diet, but with no clinical diagnosis of celiac disease, can present doctors with some challenges in making an official diagnosis of celiac disease. Because many of these patients are reluctant to endure a prolonged gluten challenge, determining whether patients have clinical celiac disease, rather than clinical gluten intolerance, can be difficult.
    Using HLA-DQ2-gliadin tetramers for detection of gluten specific T cells after a short gluten challenge could offer advantages in such cases.
    A team of researchers affiliated with the South-Eastern Norway Regional Health Authority and the University of Oslo is conducting a clinical trial to evaluate the use of HLA-DQ2-gliadin tetramer for diagnosing celiac disease. Their study will assess the use of HLA-DQ2-gliadin tetramer for staining gluten specific T cells to effectively diagnose uncertain celiac disease.
    The researchers hope this method will allow them to distinguish between true celiac disease and clinical gluten intolerance without celiac disease, in HLA-DQ2+ patients already on a gluten free diet, but without a clinical diagnosis of celiac disease.
    The study began in September 2006. The first part of the study will assess HLA-DQ2-tetramer response after gluten challenge, followed by FACS analysis of peripheral blood after gluten challenge. Final data collection for the first phase was completed in December 2009.
    The second part of the study is currently underway, and will assess mucosal responses to a 3 day gluten challenge. Biopsies will be conducted on the fourth day of gluten challenge.
    To clinically diagnose celiac disease, the researchers will take small bowel biopsies both before and after the gluten challenge, and blood samples will be taken for tetramer staining of gluten specific T cells.
    The second stage study group consists of 50 HLA-DQ2+ patients on a gluten free diet, both celiacs and uncertain celiacs. Subjects will face an oral gluten challenge of four slices of bread daily for three days. Pre-challenge blood samples will be drawn for tetramer staining of gluten-specific T-cells.
    The Institute of Immunology at Rikshospitalet, will use FACS analysis to conduct the analysis. Researchers will examine biopsies of the small intestine for morphological changes and inflammatory gene expression. They will repeat these same blood sample and biopsy procedures after the gluten challenge.
    Registration for clinical symptoms and personality traits will be done by standardized and validated forms. A dietitian will interview all patients. The full study involves a total of100 subjects, and will be completed around December 2010.

    Source:

    ClinicalTrials.gov  - ClinicalTrials.gov Identifier:    NCT01100099
     


  • Recent Articles

    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
    Read more at princegeorgecitizen.com

    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
    In their study, a team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    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.