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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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    SYNTHETIC STOOL MAY ADVANCE FECAL TRANSPLANT THERAPY FOR CELIAC DISEASE


    Roy Jamron

    Celiac.com 02/02/2013 - The possible link between the makeup of gut bacteria and celiac has been a subject of past discussion in "More Evidence Links Gut Bacteria to Celiac Disease"[1] and other articles.  Certain gut bacteria appear to enhance the immune response to gluten which may contribute to the onset of celiac disease.  Vitamin D may reduce or eliminate this enhanced gluten response, and, therefore, vitamin D deficiency may be a significant factor contributing to the onset and development of celiac disease.[2]  "Fecal transplantation", probiotics, and vitamin D have been advocated as possible therapy, treatment, and/or preventative measures against celiac disease.  While vitamin D and probiotics may have potential as preventative measures against the onset of celiac disease early in life, the option of a fecal transplant provides the actual possibility of restoring tolerance to gluten or curing celiac disease later in life following long-term intestinal mucosal recovery on a gluten-free diet.  In particular, fecal transplantation might make it possible to treat refractory celiac disease which does not respond to a gluten-free diet.


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    Photo: CC--INEEDCoffee.comFecal transplant therapy for gastrointestinal disorders was pioneered by the world reknown Australian gastroenterologist, Prof. Thomas J. Borody, M.D., and is now used most successfully for treatment of persistant C. difficile infections of the gastrointestinal tract.  Fecal transplantation involves the actual transfer of screened and filtered fecal material from a healthy donor into the gut of a patient, previously treated with antibiotics to clear gut bacteria, replacing the patient's own gut bacteria with a healthy mix of donor gut bacteria.  The fecal material may be administered either orally or anally, via tubes.  Selecting and screening a healthy donor, usually a spouse or close relative, as well as the "disgust" factor have limited use of this therapy in past years, but its high anecdotal success rate for treating stubborn C. difficile cases is finally bringing fecal transplantation into the mainsteam of routine gastrointestinal practice.  The first clinical trial of fecal transplant therapy involving 43 C. difficile patients compared to conventional vancomycin antibiotic therapy has just been published finding fecal transplantation 3 times more effective than vancomycin in resolving C. difficile infections.[3,4]

    To date, there does not appear any record of an attempt or clinical trial to treat celiac disease via fecal transplant therapy.  A big problem preventing any significant clinical trial of fecal transplantation for celiac disease is there is no way to "standardize" the healthy donor fecal material.  The mix of bacteria from every donor is unique.  Each donor must also undergo careful screening for harmful fecal pathogens.  But, now, recent developments may make such a clinical trial feasible.  A synthetic stool substitute was successfully used to clear C. difficile infections in 2 patients as part of a "proof-of-principle" study which may lead the way to eliminate the need for individual healthy feces donors and the need for screening tests.  The synthetic stool consisted of a mix of 33 bacteria species isolated from the stool of one healthy donor and cultured under simulated intestinal conditions.[5,6]  Such a standardized synthetic stool potentially administered orally in capsule form could make large scale fecal transplantation clinical trials possible.  An "off-the-shelf" bacteria mixture specifically developed for the treatment of celiac disease might become a reality.

    In the case of refractory celiac disease, a gluten-free diet does not stop the continued destruction of the intestinal mucosa.  Research has not yet found the reason for refractory celiac disease, but "molecular mimicry" may be one possible cause.  Celiac disease is an immune response to particular sequences of amino acids in gluten peptides called epitopes.  In the absence of gluten, if there exist peptides from other sources with amino acid sequences matching or "mimicking" these gluten epitopes, the destructive immune response may continue to damage the mucosa.  This is molecular mimicry in action.  It is possible that some gut bacteria may express some of these epitopes on their surface, or, more likely, secrete peptides that contain these epitopes.  These bacterial secretions might then coat the lining of the intestine sustaining the immune response.  Secreted epitopes are the more likely cause of refractory celiac disease than bacteria surface epitopes because the immune system would eventually destroy the bacteria if bacteria surface epitopes were involved.  But if the cause were the bacterial secretion epitopes, the bacteria itself would not be attacked and would continue to produce the secretions indefinitely perpetuating the mucosal damage.  Fecal transplant therapy might cure refractory celiac disease by eliminating the gut bacteria producing the epitope mimicking secretions.  How likely are such gut bacteria molecular mimics to exist?  One study has investigated this for the case of multiple sclerosis and concluded there is a strong likelihood that "normally occurring gut bacterium" could produce epitopes that might cause MS through molecular mimicry.[7]  One case of molcular mimicry between human peptides and wheat peptides has been found.[8]

    In the case of normal celiac disease (non-refractory celiac disease) treatable by a gluten-free diet, after some length of time on a gluten-free diet when the antibodies to gluten epitopes have cleared and when the intestinal mucosa has sufficiently healed, it may be possible to reprogram the immune system to tolerate gluten through fecal transplantation, along with vitamin D supplementation, providing a new healthy gut bacteria mix.  One problem, however, is that in many cases the damage to the intestinal mucosa from celiac disease does not entirely heal.[9,10]  This means that a long-term or permanent state of increased intestinal permeablity or "leaky gut" exists after beginning a gluten-free diet.  "Leaky-gut" is by no means a benign condition.  It puts a strain on the liver's detoxification abilities having to continually deal with toxins readily passing through the "leaky" intestinal mucosa.  The toxins come from gut bacteria as well as from drugs and environmental chemicals including household products and cosmetics.  Inhaled environmental toxins can be ingested when mucus expelled from the lungs is swallowed.  The overload on the liver and its inability to keep up with detoxification can lead to long-term debilitating medical conditions such as wide-spread chronic pain, muscle pain and weakness, neuropathies, fatigue, dry mouth, frequent urination, swelling, allergies, and even to other autoimmune disorders[11] due to fat soluble toxins accumulating in adipose tissue where they remain causing inflammation and raising havoc indefinitely.  The result is an unfavorable pro-inflammatory immune system environment which could impede any chance of restoring gluten tolerance.

    A promising treatment that could entirely heal the intestinal mucosa and "leaky gut" is a treatment based on a novel protein called R-spondin1.  Prior to January 2009 a small San Francisco pharmaceutical company, Nuvelo, was developing an R-spondin1 therapy drug with the designation, NU206.  NU206 had shown some great promise and success in lab studies.  Dramatic mucosal healing was demonstrated in an experimental colitis model with mice.[12]  Nuvelo's first targets were to use NU206 to heal and reduce intestinal mucosal damage from cancer chemotherapy and radiation therapy and to treat short-bowel syndrome.  In December 2008 Nuvelo had actually announced results from Phase 1 clinical safety trials on 32 healthy male volunteers demonstrating administration of NU206 caused no adverse effects.[13]  Unfortunately, Nuvelo, which also has other drugs in development, ran short of funding and, in January 2009, merged with a Colorado company, ARCA biopharma.[14]  ARCA biopharma is dedicated to developing genetically-targeted therapies for cardiovascular diseases. [http://www.nuvelo.com/]  It appears that all NU206 research and development and clinical trials were suspended with the merger.  NU206, an extremely promising drug that might enable full intestinal mucosal healing and recovery in celiac disease now sits idly on a shelf with no indication clinical trials will ever resume.  While there has been some very limited research on R-spondin1 in other medical applications by other scientists, there has been no new R-spondin1 research on intestinal healing since the merger.  Any celiac disease interest group with access to funding for celiac disease research should consider contacting ARCA biopharma to see what efforts might be implemented to restart this very important R-spondin1 research.

    Sources:

    1. More Evidence Links Gut Bacteria to Celiac Disease
    Roy S. Jamron
    Celiac.com 2008 Nov 6.
    https://www.celiac.com/articles/21685/

    2. Do Vitamin D Deficiency, Gut Bacteria, and Gluten Combine in Infancy to Cause Celiac Disease?
    Roy S. Jamron
    Celiac.com 2008 Jun 16.
    https://www.celiac.com/articles/21605/

    3. Fecal Transfer Proves Potent Clostridium difficile Treatment
    Jenni Laidman
    Medscape Medical News 2013 Jan 16.
    http://www.medscape.com/viewarticle/777772

    4. Duodenal Infusion of Donor Feces for Recurrent Clostridium difficile
    Els van Nood, Anne Vrieze, Max Nieuwdorp, Susana Fuentes, Erwin G. Zoetendal, Willem M. de Vos, Caroline E. Visser, Ed J. Kuijper, Joep F.W.M. Bartelsman, Jan G.P. Tijssen, Peter Speelman, Marcel G.W. Dijkgraaf, Josbert J. Keller
    NEJM 2013 Jan 16; Published Online
    http://www.nejm.org/doi/full/10.1056/NEJMoa1205037

    5. C difficile: Synthetic Stool Substitute Clears Infection
    Jenni Laidman
    Medscape Medical News 2013 Jan 10.
    http://www.medscape.com/viewarticle/777515

    6. Stool substitute transplant therapy for the eradication of Clostridium difficile infection: "RePOOPulating" the gut
    Elaine O Petrof, Gregory B Gloor, Stephen J Vanner, Scott J Weese, David Carter, Michelle C Daigneault, Eric M Brown, Kathleen Schroeter and Emma Allen-Vercoe
    Microbiome 2013 Jan 9;1:3.
    http://www.microbiomejournal.com/content/1/1/3

    7. Molecular mimicry revisited: gut bacteria and multiple sclerosis.
    Westall FC.
    J Clin Microbiol. 2006 Jun;44(6):2099-104.
    http://jcm.asm.org/content/44/6/2099.long

    8. IgA cross-reactivity between a nuclear autoantigen and wheat proteins suggests molecular mimicry as a possible pathomechanism in celiac disease.
    Natter S, Granditsch G, Reichel GL, Baghestanian M, Valent P, Elfman L, Gronlund H, Kraft D, Valenta R.
    Eur J Immunol. 2001 Mar;31(3):918-28.
    http://www.ncbi.nlm.nih.gov/pubmed/11241297

    9. Mucosal healing and mortality in coeliac disease.
    Lebwohl B, Granath F, Ekbom A, Montgomery SM, Murray JA, Rubio-Tapia A, Green PH, Ludvigsson JF.
    Aliment Pharmacol Ther. 2013 Feb;37(3):332-9.
    http://www.ncbi.nlm.nih.gov/pubmed/23190299

    10. Complete recovery of intestinal mucosa occurs very rarely in adult coeliac patients despite adherence to gluten-free diet.
    Lanzini A, Lanzarotto F, Villanacci V, Mora A, Bertolazzi S, Turini D, Carella G, Malagoli A, Ferrante G, Cesana BM, Ricci C.
    Aliment Pharmacol Ther. 2009 Jun 15;29(12):1299-308.
    http://www.ncbi.nlm.nih.gov/pubmed/19302264

    11. Chemical-induced allergy and autoimmunity
    Marty Bernardus Franciscus Wulferink
    [s.l.] : [s.n.], 2001 - Tekst. - Proefschrift Universiteit Utrecht
    http://igitur-archive.library.uu.nl/dissertations/1975053/inhoud.htm

    12. R-spondin1, a novel intestinotrophic mitogen, ameliorates experimental colitis in mice.
    Zhao J, de Vera J, Narushima S, Beck EX, Palencia S, Shinkawa P, Kim KA, Liu Y, Levy MD, Berg DJ, Abo A, Funk WD.
    Gastroenterology. 2007 Apr;132(4):1331-43.
    http://www.ncbi.nlm.nih.gov/pubmed/17408649

    13. Nuvelo Announces Positive Results from Phase 1 Clinical Trial of NU206 in Healthy Volunteers
    2008 Dec 10.
    http://www.evaluatepharma.com/Universal/View.aspx?type=Story&id=172716

    14. Biotechs Arca, Nuvelo complete reverse merger
    2009 Jan 28.
    http://www.bizjournals.com/sanfrancisco/stories/2009/01/26/daily64.html


    Image Caption: Photo: CC--INEEDCoffee.com
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    Guest Michele

    Posted

    Great article. I had some serious health problems after giving birth to my daughter which lead to 8 months of C. Dificile. After finally getting rid of C Dif, I continued to experience health problems (severe allergy symptoms, skin rashes, infections like strep throat, pneumonia). When my medical doctors came up short, I went to a homeopath who told me I had a wheat allergy. I went on a gluten-free diet and my health problems went away. I had considered the poop transplant when I couldn't get rid of C Dif so I find it really interesting that there is a potential connection between the poop transplant and celiac. Please keep providing articles on this subject.

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    Guest Touscents

    Posted

    Interesting to me because I have celiac disease and a fatty liver. No previous explanation for the fatty liver, as I am not a drinker.

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    Very interesting read, even though I have been gluten-free for more than five years my gut is still not totally right and I am susceptible to any gut bug that is going around. This may be the answer to my prayers in a weird kind of way.

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    Very helpful, well researched and written.

    I am pleased to be able to pass it on to people I know with these and similar issues.

    I'm sure it will make a difference.

    Many Thanks.

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    admin

    Nature Immunology 2, 353 - 360 (April 2001)
    Celiac.com 04/12/2001 - According to an article published in the April issue of Nature Immunology, Dr. Marc Rothenberg and colleagues at the Childrens Hospital Medical Center in Cincinnati, Ohio performed a series of experiments on mice which led them to the conclusion that white blood cells called eosinophils could be the cause of many food allergies and gastrointestinal inflammation. The researchers believe that the eosinophil cells, which are present throughout the body, mistakenly identify food proteins as germs in individuals with food allergies. When the intestinal lining of an allergic person is exposed to an allergen, a substance called eotaxin is released by the cells lining the intestine, which causes the eosinophil cells and other immune cells to attack them and release powerful proteins that destroy the surrounding tissues and cause eosinophilic inflammation.
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    admin

    Arch Dis Child 2004;89:499-501,512-515.
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    The researchers believe that the subsequent treatment of these children will likely help them to avoid future autoimmune disorders associated with untreated celiac disease. They also believe that because tTG screening is less expensive and more accurate than other forms of celiac disease screening, it should be used in the future for all mass-screening programs. They conclude that future mass screening programs deserve careful consideration.

    Destiny Stone
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    Most patients that are diagnosed with celiac disease are told they need to adhere to a gluten-free diet for the remainder of their lives, and then they are usually left to figure it out on their own. However, it is recommended that celiac patients have regularly scheduled  follow-ups after diagnosis for early detection of celiac related complications, and to reinforce the importance of adhering strictly to a gluten-free diet.
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    Furthermore, the celiac disease-Watch program requires all patients to have their serum tested once a year for detection of t-TG antibodies. Testing for the antibodies begins 12-16 months after a celiac diagnosis. The testing is free of charge to the patients and they can choose any laboratory they like. Results from the t-TG testing is reported to the Local Health Authority, and it is a requirement to continue to receive subsidization, although patients continue to receive subsidization regardless of their t-TG results.
    Those that test positive for t-TG antibodies during their annual follow up, are referred back to the clinic where they were initially diagnosed. At the clinic they receive a clinical evaluation, and dietary counseling. While those that have a clean bill of health are scheduled for follow up appointments every 3 years.
    Through this study, researchers found that  as a result of the celiac disease-watch program, celiac patients with negative t-TG antibodies advanced from 83% to 93%. Respectively, using mathematical modelling to t-TG conversion rates observed in the study, the projected population of t-TG negative patients increased in population from 90% to 95% over the 5 year period.
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    Source:

    Digestive and Liver Disease doi:10.1016/j.dld.2010.05.009

    Jefferson Adams
    Celiac.com 07/03/2013 - Researchers have completed a genetic study of six autoimmune diseases, including diabetes, the largest such study of human disease genetics to date. The study will help scientists in their efforts to uncover the causes of these diseases, which include autoimmune thyroid disease, celiac disease, Crohn’s disease, psoriasis, multiple sclerosis and type 1 diabetes.
    While currently unknown, the underlying causes of these conditions are believed to involve a complex combination of genetic and environmental factors. In each of the six diseases, the identified genetic variants explained only a proportion of the heritability.
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    Their data suggest that the genetic risk of these diseases more likely results from a complex interaction of hundreds of variants, each small on its own, but which, taken together impact the development of these six diseases.
    They estimate that rare variants in these risk genes make up only about three per cent of the heritability of these conditions that can be explained by common variants.
    The results, says lead study author David van Heel, suggest that "risk for these autoimmune diseases is not due to a few high-risk genetic variations." Rather, risk is likely due to a "random selection from many common genetic variants which each have a weak effect.”
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    Source:
    Nature Genetics 42, 295–302 (2010). doi:10.1038/ng.543; and Firstpost.com.

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    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.