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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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    PROCESSED FOODS CONTAINING WHEAT STARCH MAY BE SAFE FOR MANY PEOPLE WITH CELIAC DISEASE


    Kathleen La Point

    Celiac.com 09/08/2008 - Processed foods often contain ingredients derived from starch, such as dextrose (glucose) and maltodextrins. In the United States, these starch products are typically made from corn and are safe for people with celiac disease. However, more than 50% of the processed foods from Europe contain ingredients that are made from wheat starch and therefore contain trace amounts of gluten. This can pose a problem when eating imported foods or when traveling because the amount of gluten required to trigger symptoms in people with celiac disease is still under investigation and not yet completely understood.  For this reason, researchers in Finland have tested the safety of eating processed foods containing these wheat starch products.


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    Researchers recruited 90 adults who had been eating a strict gluten-free diet for at least a year, and randomly assigned them to one of three groups. Depending on the group assignment, participants daily consumed drinks containing wheat-based glucose syrup, wheat-based maltodextrins, or a placebo with no wheat starch. The amount of glucose syrup or maltodextrins given to the participants in the first two groups was comparable to the amount of gluten a person might consume while eating an average amount of processed foods.

     Effects of the wheat starch products were tested in several ways. To determine whether the trace amounts of gluten were sufficient to trigger an immune reaction, researchers examined biopsies of the small intestine for signs of inflammation and damage, and tested the blood for specific antibodies that are elevated after gluten consumption.  Small intestine biopsies taken after 24 weeks of wheat starch product consumption did not show increased damage or inflammation compared to biopsies taken before the study began, or compared to biopsies of subjects consuming the placebo.  Similarly, levels of antibodies were not increased by daily consumption of this very small quantity of gluten.

    Because eating gluten reduces nutrient absorption in people with celiac disease, blood levels of iron, folic acid, and calcium were tested in all three groups before and after the 24 week study.  Concentrations of these nutrients did not decrease in any of the groups during the study, indicating that nutrient absorption was not affected by this amount of wheat starch consumption. Additionally, gastrointestinal symptoms, such as diarrhea, indigestion, constipation, abdominal pain, and gastro-esophageal reflux, did not increase significantly in any group and none of the patients who suffered from dermatitis herpetiformis developed a rash during the study.

    Results of this study suggest that the trace amounts of gluten in processed foods containing wheat starch products were not harmful for most people with celiac disease. Although additional studies will help clarify the issue, it may be unnecessary for people to avoid these products, making it easier to adhere to a “gluten-free” diet.

    Kaukinen K, Salmi T, Huhtala H, et al. Clinical trial: gluten microchallenge with wheat-based starch hydrolysates in celiac disease patients:  a randomized, double-blind, placebo-controlled study study to evaluate safety. Alimentary Pharmacolgy 

    Aliment Pharmacol Ther. 2008 Aug 17.
    Departments of Gastroenterology and Alimentary Tract Surgery, University of Tampere and Tampere University Hospital, Tampere, Finland.


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    Although this article's claims might scientifically turnout to be correct, in practice it seems risky. Celiacs must already rely so heavily on trust that ingredients are listed correctly and foods are prepared safely. If suddenly it's considered 'ok' to have certain wheat ingredients in 'safe-for-Celiac's' foods, who will be policing the manufacturers to find out exactly 'how much' gluten is in a particular product? Also, if you start diluting the message that wheat is dangerous for Celiacs, then Celiacs will have a much harder time explaining to others what they can and cannot have. It will weaken the gains Celiacs have made with Restaurants, food manufacturers, etc. I fear it will lead to much more liberal, arbitrary decisions by food preparers about what is safe to serve to Celiacs, resulting in dangerous foods being served to Celiacs.

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    This study was done in a country that diagnoses Celiac Disease much sooner than other countries. The tests done after the ingestion are known not to be 100% accurate and can miss the damaged areas. Also, ingestion of gluten, even if it causes no 'obvious' symptoms can cause harm to other areas, it's an 'autoimmune' disorder. I wish they would stop trying to find how much gluten is 'safe', and concentrate on finding a solution to the problem so that generations to come will not have the limitations that I have.

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    How is this wheat starch (from the study) similar or dissimilar to the wheat starch found in bread products in Europe that are Celiac-friendly but not recommended here in the U.S.?

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    Guest Frank O'Barski

    Posted

    I question the accuracy of this study. It is difficult to judge without knowing the methodology of the study. Who were the subjects? Were they self selected, or diagnosed with Celiac via medical testing? I think there is still much we do not know about the way the body deals with such toxic attacks. I went undiagnosed until I was in my late forties, (after a lifetime of miserable health) and have absolutely no tolerance for wheat gluten now. I have acquaintances who were diagnosed as children, and can tolerate wheat based foods for short periods.

    Even if the study is accurate, I think it is only one piece of the puzzle. I would caution people with the disease not to abuse their ability to handle this insult to their system.

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    Guest Ron Soulis

    Posted

    I am a Celiac, and I've suspected that the concentration of Gluten must be low in wheat starch since I have not had any symptoms even though I've been eating 'Corn Pops' which contain a small amount of wheat starch.

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    Guest ColoradoSue

    Posted

    This so-called study does not change the fact that if you ingest gluten, you are damaging your body regardless of the amount ingested. The study also does not say how much of the wheat starch, never mind that it was comparable to what is consumed in processed foods on a daily basis, was given to participants. Lets not get people's hope's up here. I am hyper sensitive to gluten and will not give up the good health I have worked so hard to maintain since being diagnosed 4 years ago on one study from Europe where standards are much different. And I hope you all do the same.

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    Guest Paul Jackson

    Posted

    I was diagnosed with celiac in May of '07 and have only had a handful of relapses--all of them unwitting. One of these consisted of a California sushi roll made of unprocessed, whole, natural seafood; fresh cucumber; fresh avocado; all in a mayonnaise dressing, 'gluten-free' (so I was told!) and wrapped in nori seaweed without any soy sauce whatsoever. Over a fortnight (2 weeks), I ate about ten servings of this dish, which I later learned did have a single wheat ingredient, viz., wheat starch, in the dressing, over a fortnight.

     

    Although I have no known GI problem besides celiac, the effects were simply awful: intestinal gas, as well as symptoms typical of a gluten attack on me (edema or bloating, mental fog, and nervous tension).

     

    Of course, I do not know whether my gut was damaged by this experience. But I do know that I'm highly symptomatic whenever glutened, and that I did not experience any symptoms until the second week of this experience. So I share O'Barski's skepticism: 'I think there is still much we do not know about the way the body deals with such toxic attacks.' At best, the study is a small, incremental step in the nascent scientific understanding of celiac, which is a very complex disease.

     

    And, I know I now lack trust in the kitchen staff at my employer's cafeteria, and that I will do my best to avoid wheat starch, no matter how 'safe' Finnish researchers consider it to be.

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    I was diagnosed in 1997 after 13 years of suffering and I too am completely intolerant to any gluten whatsoever. I agree, stop trying to figure out how much some people can have and concentrate efforts on understanding the entirety of this disease. It is not only gastrointestinal, it also has an intense impact on the endocrine and neurological systems. Was that tested, no. And because these aspects don't get attention, it is next to impossible to get doctors to pursue these problems. It is so great to read about others who are ultra sensitive like myself. I am not alone in this. However, we do not have any organizations out there fighting for our protection like all of those that can have some gluten and we need protection from the little bit that is going to be allowed by the FDA.

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    This article is indeed interesting, but much more study to support the supposition contained therein will indeed be needed to clarify and confirm their findings.

    Certainly all Celiacs would be delighted to know that Maltodextrin, modified food starch and such were identified on prepared food labels as wheat and/or corn products, which is NOT now required in labeling, but should be!!!

    Avoiding any trace of gluten is a nearly impossible challenge! We need better and more accurate food labeling requirements.

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    When reading articles such as these I think the thing to take away, is that reading labels is the best way to avoid gluten. That said, after almost 40 years as a celiac (yes that was before blood tests etc), I have found my own level of comfort with the disease. One thing that I learned many years ago, is not be be paranoid.

    I have, over the years, taken the burger out of the bun, picked the chicken flesh out of battered 'stuff', and scrapped dressing off lettuce leaves - all with no physical detriment except perhaps frustration.

    I do know when I have had gluten (even teeny tiny amounts such as in a multivitamin that I took), and my blood work shows no antibodies, so I figure I am doing ok.

    So I really think these studies are helpful - at least they are trying to find out tolerances - and they may just find that we all have different tolerances - who knows, but publishing these articles should be encouraged.

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    Greetings from Finland! I'm checking out how coeliac disease is handled elsewhere in the world, and what kind of articles are published via organizations. I started the diet in my early 20s after blood tests and biopsies - and it improved the quality of life. Some of the gluten-free products here contain wheat starch, but my test results have remained good. Glucose syrup and maltodextrins are considered completely safe - I've understood that the traces are microscopic. At the moment, gluten free food is reasonably available at grocery stores, restaurants, cafeterias and schools, as the coeliac disease is quite common and tested.

     

    European standards aren't always total BS, though sometimes they are...I do acknowledge that some might need stricter diet and science is never certain...

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    I just think that many of us need to listen to our bodies and that labeling in the United States needs to be better. Maltodextrin in this country tends NOT to be wheat starch, which is good, and we need a better understanding of of celiac. However, this at least is a start. They need to test the neurological and endocrological effects. It's a start though.

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    This is a helpful article, but it is not specific enough concerning which products can be safely used. Wheat starch itself does not meet the <20 ppm threshold needed for healthy use for celiacs. Wheat starch hydrolysates (derivatives of wheat starch), such as maltodextrin, however, are low enough in gluten levels to be safe. This article needs to point that out. Go to Gluten Free Dietician and look up articles in the newsletter section for examples.

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    Guest Katrina

    Posted

    Greetings from Finland! I'm checking out how coeliac disease is handled elsewhere in the world, and what kind of articles are published via organizations. I started the diet in my early 20s after blood tests and biopsies - and it improved the quality of life. Some of the gluten-free products here contain wheat starch, but my test results have remained good. Glucose syrup and maltodextrins are considered completely safe - I've understood that the traces are microscopic. At the moment, gluten free food is reasonably available at grocery stores, restaurants, cafeterias and schools, as the coeliac disease is quite common and tested.

     

    European standards aren't always total BS, though sometimes they are...I do acknowledge that some might need stricter diet and science is never certain...

    Hello, Stina. I'm in the U.S. Gluten-free foods can be found in most of our grocery stores now. But going out to eat, cafeterias and schools are nearly impossible to navigate here for patients with coeliac disease. Most processed foods are right out, though if you are willing to read labels you may find other foods that are indeed gluten-free (but only god knows if it's been contaminated in the plant it was canned in). It's been a rough journey for me this summer, from depression after my diagnosis, to glee finding out as a baker I still had options to bake in my kitchen. I still end up with bad days after accidental contamination. But overall, I am beginning to enjoy eating again! Many homeschooled students opt out of public schools due to extreme allergies to nuts, glutens and inhalant caused asthma. It is that difficult to "survive" the most available options for is here.

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    admin
    Q: Why would people with celiac disease want to eat Codex wheat starch?
    A: Most people who have tried products made with Codex wheat starch feel that they are far superior to gluten-free products that do not contain the ingredient.
    Celiac.com 06/25/2000 - The Codex Alimentarius Commission was created by the World Health Organization and the Food and Agriculture Organization of the United Nations. It currently provides the only international gluten-free food standard for manufacturers. Its members include the Unites States and Canada in North America, and most European, Latin American, African and Asian countries. It is worth noting that European countries which currently conduct the most cutting-edge research on celiac disease in the world, namely Finland, Norway, Italy, Sweden and the UK, are also members of the Codex, and they currently accept the Codex standard for gluten-free foods that specifies a limit of 500 parts per million (ppm) of gluten in foods. This incredibly low level of gluten is considered safe by the Codex for people with celiac disease, as our products that contain specially made wheat starch with levels of gluten under this amount. Most manufacturers of gluten-free food use wheat starch that falls below 200 ppm, rather than the higher accepted limit of 500 ppm, and the current Codex gluten-free standard is in the process of being revised to the 200 ppm level.
    The acceptance of the Codex wheat starch by most European countries is based on years of research and the follow up care of hundreds of thousands, perhaps millions of people with celiac disease, whose doctors found that they recovered fine while eating it. There is currently much clinical research being done in Europe on the safety of Codex wheat starch, the results of which have further reinforced the concept that Codex wheat starch is safe for people with celiac disease. Most people with celiac disease (excluding extremely sensitive individuals and people with wheat allergy) should be able to eat Codex wheat starch without any damage or problems associated with the disease.

    Jefferson Adams
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    References
    1. Lo W, Sano K, Lebwohl B, Diamond B, Green PH. Changing presentation of adult celiac disease. Dig Dis Sci 2003; 48:395-8.
    Aliment Pharmacol Ther. 2008; 27:1044-1052. Epub 2008 February 29.



    Jefferson Adams
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    Source:

    Clin Gastroenterol Hepatol. 2010 Oct 15. doi:10.1016/j.cgh.2010.09.025

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    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.