Search the Community

Celiac.com 06/10/2021 - When I walked out of the doctor’s office in West Virginia in 1999 with my diagnosis in hand, I felt a confusing mixture of relief at finally knowing what in the world was wrong with me and dismay at learning there was nothing left that I could eat!  Celiac disease. I had never heard of it, yet all the tests showed that I definitely had this autoimmune disorder which prevented me from ever again eating wheat, barley or rye. I had spent nearly 10 years suffering through untold and embarrassing doctors’ tests and misdiagnoses as well as riding a roller coaster of nasty gastrointestinal symptoms.  Bouncing between specialists at major hospitals got me nowhere for those many years, as they had no idea what was the cause of my ailments. Finally, through luck or fate, I happened upon a doctor in Huntington, West Virginia who pieced together my symptoms correctly. The good news was that I at last knew something could be done about my symptoms; the bad news was actually trying to do it!  Having to transition immediately from my steady diet of pizza, pasta, and bagels to rice, beans and bananas proved necessary but incredibly difficult, especially since there were virtually no palatable gluten-free recipes, ready-made foods or mixes.  As with most things, what seemed at the time like an ending was actually a beginning —it was just a little hard to see at the time. Even as a little girl, I had loved baking!  My EasyBake Oven was broken-in early, as my mother patiently let me experiment at a very young age. When I was 16, I went to Malaysia as a foreign exchange student and saw unspeakable things that caused me to become a life-long vegetarian.  I could eat almost nothing my host family ate, so I survived primarily on bread and things I could make for myself.  I was determined to persevere in this situation where I was the unwelcome minority. It became a matter of physical as well as emotional survival.  It was an experience that brought unexpected rewards and helped me to know the value of determination and problem solving—traits I would certainly need later to handle living with celiac disease.  In college, the mainstays of my diet were pastas and breads; I also often baked for friends who loved being treated to homemade cookies, cakes, muffins and brownies.  Baking was even an outlet for my creativity during law school and a great stress-reliever too!  I ultimately baked so much that I ended up selling my excess treats to the law school café! Creating recipes in the kitchen has always been part of who I am—to make and share things that others enjoy is one of my greatest pleasures.  But then I woke up one day as an undergraduate and was sick. I was never the same again.  It was like the final drop had dripped into a sink full of water and from then on, the sink would overflow with even the smallest addition. I couldn’t go out on dinner dates, go out to eat with friends, enjoy Thanksgiving dinner with family, participate in a birthday party, or share any other social activity that involved food in any way (doesn’t everything?!) without getting sick. It took almost ten years to find out that the culprit was the main ingredient in the things I most loved to eat and make! I was in the midst of planning my wedding when the diagnosis came; just about the only things I could eat at the reception were fruit, some steamed vegetables and the (proverbial) icing on the cake.  All my dreams of wowing my new husband with great cooking and baking were sabotaged as I began to experiment in the restrictive world of gluten-free cooking.  Recipes from special cookbooks called for ingredients that were next to impossible to find and yielded results that were mostly inedible.  My husband and I both worked long hours—he as an Assistant United States Attorney and I as an Assistant State Prosecutor—but there was no fast food I could eat, and even regular restaurant menus were mine fields of hidden gluten.  Trying to bake for holidays was one disaster after another.  My husband began to ask, “Is this gluten-free, honey?” and when the answer was yes, he would politely decline. All I wanted was for my life to be “normal” again.  Several things happened at about the same time which gave me direction and which have made all the difference in my life and, I hope, in the lives of many others!  When I was diagnosed, my mother made it her mission to find recipes for things I could still enjoy eating and she created a binder of these recipes that we both began to expand.  We started a collection of recipes from everyone from personal friends to people we met at the health food store.  I found it a challenge to try recipes and to improve upon them by modifying them in my own ways. About a year and a half after the diagnosis, we moved to Baltimore and I discovered I was pregnant.  Now, added to my new job in a new place with new doctors was the very serious challenge of maintaining proper nutrition for pregnancy and breast feeding.  This caused me to shift all my efforts into high gear. I wanted to revolutionize gluten-free cooking into something even non-celiacs would enjoy. Several years of experimenting with various grains and flours culminated in my creation of a mixture that could successfully and safely replace all purpose wheat flour.  The primitive binder of recipes we had begun blossomed into lots of delicious concoctions. As others (celiac and non-celiac alike) repeatedly asked for recipes and doggie bags, I realized how important it was to share my hard work and successes with others trying to live normally without wheat and gluten.  I could create fabulous things to eat, teach others what I had learned about our disease and how to manage it, and meet lots of new people along the way!  I’ve been able to accomplish all these things by sharing my cookbook/guidebook called Nearly Normal Cooking for Gluten-Free Eating and by consulting with other celiacs and those with food allergies. I have met some amazing people along the way and helped them meet our challenge head-on and overcome it in fun and creative ways. So, there really is a higher purpose for my diagnosis. I took a mighty circuitous route, but only because I have celiac disease am I now in a place where I can help others and do the things that I love best at the same time. It has been loads of work, but I persevere knowing that I’m cooking not only for me and my family, but for millions of others who can now live a healthy, gluten-free and truly “nearly normal” life!

Celiac.com 08/08/2020 - It took my wife to discover it was gluten. I have been corresponding with Arthur. He contacted me because of an article I wrote about the difficulties of making an early diagnosis of celiac disease. He wrote: “Your article touched a nerve, as you could see from the general round of applause and approval it received. Bravo! I have consulted dozens of doctors over 30 years (in the USA and France) but not one had ever suggested gluten could be the culprit for my problems. It took my wife to do that! Now, I wonder if more education is needed in the medical community on this problem. I’ve been gluten-free for nearly three months now, and all my symptoms have disappeared and I feel great.” Can humans get along without gluten? He goes on to ask a series of questions: “I suggest that you write an article to advise us folks who go gluten-free about the following: is gluten in any way, shape or form needed in a well-rounded diet? What role does gluten play in nutrition, or can humans get along fine over the long term without it? Thanks. Best wishes, Art.” Gluten – good or bad? Like most things, there are two sides of this story. The good: Wheat grains (containing gluten) started as part of our human diet around 10,000 years ago. It became a convenient and nutritious food, which is now a staple in the Western world. Moreover, gluten has a number of properties that has made its wide scale use inevitable. Gluten is a protein that gives a pleasing texture and flavor to bread. These grains subsequently allowed the blooming of mankind and have sustained our planet’s population explosion. Bread has literally fed the starving. The bad: No one knew that there was a dark side to these grains. This has only been discovered over the last 60 years. Ironically, during this time the consumption of gluten grains has accelerated. Nowadays, the fast-food industry bases their meals on buns, breads and pizza – all made from gluten-rich flour. When you add the rampant overeating with huge serving sizes (super-sizing), the present consumption of gluten-foods is overwhelming. Because wheat-based gluten foods are relatively cheap, they have tended to crowd variety out of the diet. The outcome is a tendency for people to eat a rather narrow range of foods. This can lead to nutritional deficiencies. Gluten also has now been recognized to cause a lot of health problems in susceptible people. Celiac disease, the gut damage set off by gluten, affects one in a hundred people. Of greater concern is that at least ten times that number suffers from the affects of the gluten syndrome (also known as the gluten sensitivity). Who needs gluten? Hence, the dilemma: The world still needs gluten grains to feed its human inhabitants. But this is creating ill health in at least 10% of that population. Since so many people are getting ill from the foods that they are eating, then surely it would be better to shift to other foods to improve the health of the population. It turns out that gluten is not a necessary protein. The gluten grains are convenient and in demand - but they are not biologically essential. In fact, for perhaps a third of the population gluten is biologically undesirable (this is a controversial statement and needs a lot more research to back it up). Are there risks of going gluten free? It is my experience that for most families who go gluten-free that the quality of their diet actually improves. As they no longer fill up on cheap breads, they are forced to branch out into vegetables, fruits, meats and other non-gluten grains. This greatly enhances the variety of foods in their diet, which improves their health. Gluten is not a necessary part of a well-rounded diet. Is the gluten habit easy to kick? Unfortunately, gluten has an addictive quality because five of its breakdown products have a morphine-like activity. As you know, foods crammed with gluten such as cakes, dumplings, steamed puddings and big hunks of bread are often referred to as “comfort foods”. For some, this comfort is derived from the morphine-like stimulation of the brain caused by these partial digests of gluten. Consequently, when gluten is suddenly removed from the diet, some people experience a withdrawal effect. This is one of the reasons why a gluten-free diet is viewed by so many people as a horror story. Indeed, withdrawal effects from gluten on the first week of a gluten-free diet are not uncommon. Although this usually passes after a week or so, it can be difficult for children to comply during the first few days. It is sensible to slowly go gluten free over a week or so to avoid this reaction. To sum up: Yes! You can you live a healthy life without gluten! Absolutely! Overall, your diet without gluten is much more healthy, wholesome, and packed with goodness. This will be good news to people who have embarked on their gluten-free journey.

Celiac.com 07/19/2017 - Ever wondered what life is like in the celiac disease capital of the world? In Finland, an estimated 2.4 percent of adults from 30 to 64 years old, and one in 99 children are diagnosed with celiac disease. The country also holds the record for the most overall cases of the celiac disease in the world. If ever there was a world headquarters for celiac disease, it would be Finland. One of the best things about Finland is that awareness of keliaka (celiac disease) is common, and gluten-free food is readily available. Throughout the country, most folks you run into know some friend, colleague or family member with the condition. Everyone seems to be aware that celiac disease results from an adverse gut reaction gluten, a protein in wheat, barley and rye products. Meanwhile, supermarkets, high-end restaurants, convenience stores, fast-food joints, gas stations, and even international fast food chains like McDonald’s offer gluten-free options. As a nation, Finland places a heavy emphasis on research, diagnostics or government support for celiac disease. The nation embraces people who follow what the Finns call gluteeniton, or a ‘gluten-free’ diet. So if you’re looking for the closest thing to a gluten-free paradise on earth, consider a visit to Finland. Read more at AllergicLiving.com

Celiac.com 07/21/2017 - In previous studies, a team of scientists led by Professor Anette-Gabriele Ziegler had already shown an association between infections in early childhood and the development of type 1 diabetes. In that study, the researchers saw the highest risk for type 1 diabetes in children who experienced repeated respiratory infections in the first six months of life. Recently, Zeigler and another team of colleagues from the Institute for Diabetes Research at Helmholtz Zentrum München, a partner in the German Center for Diabetes Research (DZD), set out to determine whether infections during infancy are associated with increased risk for celiac disease later on. Their current study shows that the risk of developing celiac disease is particularly high when gastrointestinal tract infections occur during the first year of life. To a lesser extent, an increased disease risk was also seen in connection with early respiratory tract infections. The risk seems to be particularly high for people who experience repeated gastrointestinal infections in the first year of life. Whether the connections with early infections and later celiac risk are causal or are based on changes in the microbiome or specific immune responses is not clear from the data, said first author Dr. Andreas Beyerlein. "However," Beyerlein added, "it seems that the increased risk of celiac disease is associated with a permanent inflammation of the gastrointestinal tract in early childhood and is not caused by a specific viral or bacterial pathogen." The team reached their conclusion after analyzing fully anonymized data provided by the Bavarian Association of Statutory Health Insurance Physicians (Kassenärztliche Vereinigung Bayern) of 295,420 children who were born between 2005 and 2007. Medically attended infections from birth until a median age of 8.5 years were considered in the analysis. A total of 853 children developed gluten intolerance, equivalent to 0.3 percent. Their results appear in the American Journal of Epidemiology. Source: Helmholtz Zentrum München - German Research Center for Environmental Health