NOTE FROM ALICE
NFCA Executive Director
Plant your own seeds this spring... the seeds of awareness. Word of mouth is one of the best forms of helping those folks still undiagnosed get diagnosed. Like Mother Nature your words have limitless potential to pollinate your community so, in turn, additional seeds of awareness may germinate. For celiac sufferers the real beauty in spreading the word is that you may help improve the quality or EVEN save the life of another
person. You see, we are lucky to have a celiac diagnosis. We have a treatment, a gluten free diet.
Just think...just by "sharing your story" you can help someone Restore Her Health and Reclaim Her Life. Just think...just by passing out brochures to doctors in your area, you can help someone Restore Her Health and Reclaim Her Life. Just think... just by distributing brochures to local school nurses, you can help someone Restore Her Health and Reclaim Her Life. Just think....just by volunteering at local health fairs, you can help someone Restore Her Health and Reclaim Her Life. Just think.... Just by telling people to fill out the symptom checklist, you can help someone Restore Her Health and Reclaim Her Life. Just think... just by donating to the NFCA (www.beyondceliac.org), you can help someone Restore Her Health and Reclaim Her Life.
So, this spring...set a goal! And, think positive! Tell five friends about celiac disease. Who knows, they might have it, too. Also, try meeting other people with celiac. It is comforting to know others have a similar story. By helping others, you will help yourself! You never know who you will bump into in the elevator, at the supermarket, standing in line at the movie theater. They can be an influencer and help create the seeds of change. How do you think great corporations like PF Chang's and Anheuser-Busch decided to enter the gluten-free market? They were inspired by a celiac sufferer just like "YOU"!!! We have a vision for the future, and the future is now!!!! But we need your help. There is work to do and we need people like you to do it!
Get out and spread the seeds of change.
Back to Top
BEYOND RICE CAKES
Baby Bits: Registry Seeks to Link Celiac Disease to Birth Defects
By Vanessa Maltin
NFCA Director of Outreach & Programming
Diarrhea, bloating and gas are the first things that come to mind when I hear the words celiac disease. Icky right?!?! But have you ever stopped to think about the non-gastrointestinal complications? I'm talking about things that you might not associate with celiac disease…complications that might not even be linked yet.
According to the University of Chicago Celiac Disease Center, there are more than 300 symptoms related to celiac disease. To better understand how celiac disease affects the body and how it may relate to birth defects, the National Foundation for Celiac Awareness and Birth Defect Research for Children are asking that parents who are diagnosed with celiac disease to register their children in the National Birth Defect Registry if their children have been diagnosed with a structural or functional defect. The registry will help determine if celiac disease plays a role in children developing birth defects.
What does this mean and how do you know if you should register your child?
First of all, you must understand what a birth defect is. According to the Centers for Disease Control and Prevention (CDC), a birth defect is an abnormality of structure, function, or metabolism (body chemistry) present at birth that results in physical or mental disability, or is fatal. Most birth defects occur during the first three months of pregnancy, but brain development continues throughout pregnancy so there may be effects past the first trimester. There are thousands of different birth defects that range in severity from very mild to extremely severe and life threatening. Approximately 250,000 babies are born each year with a major structural birth defect.
There are two categories of birth defects. Structural birth defects are related to body parts and generally result in physical disabilities. Common structural defects include cleft lip or cleft palate, heart defects, abnormal limbs, and neural tube defects that are related to development of the brain and spinal cord.
Functional birth defects relate to how the body works and may result in immune and nervous system disabilities. Examples of functional defects include problems such as attention disorders, autism, Asperger's Syndrome, Pervasive Developmental Delay, learning disabilities and other intellectual disabilities.
Birth defects are recorded on the newborn hospital records of 3% or more of babies born in the United States. But, from one-third to one-half of all birth defects are not detected in the neonatal period. If babies are followed for 5-7 years after birth, up to 16% may have a minor or major birth defect. Approximately 20% of all birth defects are genetic (having one or more gene that does not work correctly; having an extra chromosome or missing part of one). Other birth defects are caused by maternal illnesses like diabetes or exposure to certain viruses like rubella or CMV. In addition, an increased risk birth defects has also been linked to deficiencies in certain nutrients like folic acid. Other experts believe that 25% or more of birth defects of unknown causes will be linked to an adverse environmental exposure during pregnancy or in the prenatal period.
Can celiac disease cause birth defects? The answer is: we don't know! That's why we would like to join with Birth Defect Research for Children in collecting data through the National Birth Defect Registry. We want to collect information about current patients to determine if there is a there is a link that can be proved scientifically.
The National Birth Defect Registry is a research project designed through a collaboration of seven prominent scientists. The registry collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers of these children. Registry data have identified patterns of birth defects in the children of Vietnam and Gulf War Veterans. The registry has also helped detect clusters of birth defects in communities with toxic environmental exposures and in the children of mothers exposed to similar medications during pregnancy. Registry data have been presented to numerous government agencies and in many national and international media forums.
How can you help?
If you have celiac disease and are the parent of a child who was born with a structural or functional defect, enter your case in the registry.
Step 1: Register your case at http://www.birthdefects.org/registry/main.asp. You will be asked to fill out basic demographic information about your family's medical history.
Step 2: Currently, there is no option within the registry to select celiac disease. But don't worry! When you respond to the section about maternal and paternal illness, just fill in the blank that you are DIAGNOSED WITH CELIAC DISEASE or UNDIAGNOSED CELIAC DISEASE, depending on the time of the diagnosis in relation to childbirth. The evidence must be medically documented cases of both celiac disease and the structural or functional birth defect.
If you are a parent of a child with birth defects, please take a few minutes to contribute to the registry. Your participation will ensure that future research includes celiac disease and helps all of us with celiac better understand our disease and how it affects our future children.
Once data is collected, NFCA will publish the findings!
Back to Top
Chocolate for Dinner: How to Use Chocolate for More than Dessert
By Edgar Steele
NFCA Chef Spokesman
Cooking "inside the box" leads most of us to follow a recipe, adjust the final product to our personal taste, and then enjoy the fruits of our labor. To help us understand how not only to follow directions in cooking, but to create our own dish and flavor profiles that will be pleasing to the palate, it is important to break away from the "training wheels" of a guide such as a recipe, and to learn how dishes are built. One may ponder how something like chocolate can be used to create a savory dish. In order to understand the answer, it is important to understand the following: with the proper thought process, it is easier and, eventually, more pleasing to follow your own guidelines for cooking than to follow directions. Recipes are important for inspiration and fundamental learning, but, when used properly, will be building a base instead of a law to follow.
In my opinion, starting with the profiles of flavor and texture is crucial to find the starting point in the process. As an example, let's examine a traditional gazpacho. The flavors are sweet from the tomatoes, spicy from the jalapeno, sour from lime and/or vinegar, refreshing from the premium ingredients, and salty from the adjusted seasoning. Next, the texture of the soup is creamy from the bread and crunchy from the croutons. Change it!
Try using a different type of tomato, such as a yellow or green heirloom variety. This may change the sweet or acidic properties of the soup. Try using a different source of acidity such as lemon, your favorite vinegar, or some type of berry. Try using a new spice, such as cayenne or a different variety of chili. The realm of textures in a soup is usually intertwined with a garnish, and this is the fun part. When deciding on the garnish, look first to the ingredients in the soup. How can you manipulate a tomato? You may wish to extract the seed (refer to the NFCA archived watermelon article). You may wish to prepare a gelatin of tomato juice to place atop the soup in cubed form. An oil of sun dried tomato and extra virgin olive oil can be drizzled atop as well for an extra flavor and texture. Try hitting the finished plate with fresh zest of lemon or lime. If using a berry in the mix, place a fresh cut berry atop the soup.
I didn't once mention chocolate in the above example, and for this I apologize a little bit. It really is not important, however, because chocolate is not the lesson. The main point is for us to focus on the properties of each individual ingredient and gain an understanding of their flavor and texture contributions to a dish. What is chocolate? To the mouth it can be sweet, bitter and creamy. Let's embrace those properties, and, then, develop them. Before we create a spectacular dish, we owe it to the chocolate to understand its roots.
Chocolate as we know it is produced from the tropical cacao tree, which is native to South America. The seeds of the cacao tree are fermented, dried, cleaned, roasted, and the shell is then removed. The shell of the seed is removed at this point to produce a wonderfully bitter and crunchy ingredient known as cocao nibs. These nibs can be used in their natural state or ground and liquefied to create chocolate liquor. From this liquor, cocoa solids and cocoa butter are produced. Most of the chocolate marketed and therefore used by chefs is sweetened chocolate, which is the combination of chocolate in its pure form with sugar. In its pure form, chocolate is mainly cacao solids and cocoa butter in varying proportions. Milk chocolate is pure with the addition of a milk product, and white chocolate contains cocoa butter, sugar and milk but with the absence of cocoa solids. Because of its absence, the cocoa solids make the white variety not a true chocolate. Dark chocolate has the benefit of lowering blood pressure and has a number of antioxidants.
Now let's incorporate chocolate into our dish-developing solution.
I like grilled chicken with buttered carrots, sautéed collard greens, and mashed potatoes. Do we dare incorporate chocolate into this mix? I want to so badly! As a starting point of inspiration for this fusion, I will reference a traditional molé sauce. A molé sauce is nuts, fruit, chilies, herbs, vegetables and… chocolate. From this point, it is a game of matching. Let's marinate our beautiful breasts of chicken in a mix of fruit juice such as orange with cocoa powder for 12 hours before grilling. Next, I will make a glaze of butter, cocoa butter and fresh chopped cilantro for the carrots which will be blanched ahead of time. When whipping the potatoes, I will add a hint of white chocolate to the butter and cream that will be used to texture and flavor the potatoes. This will provide an added note of sweetness and creaminess to the final mashers. After sautéing the greens in extra virgin olive oil and garlic, I will toss in some cocoa nibs at the end for some added crunchy texture. We now have a modified version of my favorite, yet simple, chicken with chocolate…and this is only the beginning!
White Chocolate Scallops with Cauliflower Puree
- 6 oz. fresh scallops
- Cocoa butter for dusting
- 8 oz cauliflower
- 3 qts. salted water
- 3 Tbsp. heavy cream, heated
- 1 tsp. extra virgin olive oil
- 1 oz butter, room temperature
- 1 Tbsp. white chocolate, chopped
- 1 tsp. chopped parsley
- Salt to taste
- Trim the tips of the cauliflower to yield ¼ cup cauliflower florets. In a small saucepot, heat salted water to a boil. Place the cauliflower in the water and boil just until soft, about 3 minutes. Drain the water and add the cooked cauliflower directly into a blender. Add 2 tablespoons of the hot cream and the butter, and puree on high speed until the mixture is smooth.
- Add the white chocolate to the remaining cream and stir until it is completely melted and keep this mixture hot.
- Heat the oil in a small sauté pan, and sauté the cauliflower florets until golden brown. Season them with salt.
- Dust the scallops in the cocoa butter, season them with salt and heat a sauté pan to medium high heat. Add the scallops to the pan, and allow them to cook to a golden color on both sides.
- Place a few dollops of the cauliflower puree onto a plate. Place the seared scallops on top of the puree. Arrange the sautéed cauliflower in a scattered fashion around the scallops. Drizzle a small amount of the white chocolate over the plate. To finish, sprinkle the parsley over the scallops and serve hot.
Back to Top
GLUTEN-FREE COOKING SPREE
Beer Jello?? St. Louis Gluten-Free Cooking Spree Brings New Flavors, Delicious Food
By Vanessa Maltin
NFCA Director of Programming & Communications
Have you ever been in a room filled with gluten-free beer…..beer bottles, beer bread, beer jello and nearly every other food item made from gluten-free beer! Sounds like a dream right?? On Tuesday February 26 this actually happened at none other than Anheuser-Busch's headquarters!
Top St. Louis-area chefs, doctors and dietitians took over the Budweiser and Bud Light rooms at the Anheuser-Busch Brewery and cooked up some of the most delicious gluten-free beer-based meals of all time! Five teams raced against the clock to prepare decadent meals that highlighted the event's secret ingredient: Redbridge Beer.
Team 1 included Chef Matthew Dawson (Peppertini's Piano Bar & Grill), Dr. Tara Talwar (St. Anthony's Medical Center), Jamie Bommarito (St. Louis University), and Stephanie Jansing (St. Louis University). This team presented Chilean Sea Bass Tempura.
Team 2 was led by the former executive chef of the Plaza Hotel in New York City, Chef Marc Felix. He was joined by Dr. Paul Stein (Washington University School of Medicine), Dr. Kathryn Diemer (Washington University School of Medicine) and Aaron Reinberg (Operation Food Search). This team went against the norm by preparing a Redbridge Beer Jello with Tapioca Pearls, Tropical Fruit Salsa and Redbridge Foam. All I can say is YUMMY! AMAZING…OH MY GOODNESS!
Team 3's Chef Eric Brenner (Moxy Bistro) actually doubles as a drummer after he finishes cooking! His teammates were Dr. Amanda Heidemann (BJC Medical Center), Lori Richardson (Apria Healthcare) and Lana Sepek. This team made a fabulous Steak and Ale Stew.
Team 4 was a huge hit! Chef Scott Phillips (Provisions Gourmet), Dr. Brent Tetri (St. Louis University), Dr. Marc Bernstein (Endoscopy Center of St. Louis) and Betty Jo Hummel (St. Louis Dietetic Association) presented a Redbridge Chicken with Caramelized Onion Cream. Soooo good!
Team 5 prepared a delightful Chevre Stuffed Chicken Vera Cruz with Roasted Corn and Red Pepper Rice Pilaf. This team included Chef Robert Huhn (Aramark), Dr. James Keating (St. Louis Children's Hospital), Tara Todd (St. Louis Children's Hospital) and Molly Ennis (St. Louis University).
The judges for the evening were Candace O'Conner (Outlook Magazine), Dr. Leonard Weinstock (BJC Hospital), Amy Davis (Crossing Back to Health), and Catherine Neville and Allyson Mace from Sauce Magazine.
So…who were the big winners for the night?? It was a tie! The judges couldn't decide, so the NFCA decided to award two prizes: The first was for BEST TASTE. This award went to team #4 with the Redbridge Chicken with Caramelized Onion Cream. The second award was for BEST USE OF GLUTEN-FREE INGREDIENTS. This award went to team #2 with the Redbridge Beer Jello with Tapioca Pearls, Tropical Fruit Salsa and Redbridge Foam! I just knew the jello would win! They used 7 different Bob's Red Mill flours!
A huge thank you to Anheuser-Busch for providing the perfect location for the event and for being such a tremendous help with raising awareness of celiac disease…but most of all thank you for Redbridge beer!
A very special thank you to all of the NFCA sponsors who make having these events possible and to all of the vendors who graciously donated food for the event! We couldn't have done it without you!
And, a HUGE ROUND OF APPLAUSE for the St. Louis Celiac Community for making this one of the largest attended Cooking Sprees yet!
Back to Top
Functional Medicine: Repairing the Damage of Celiac
By Dr. Morgan Camp M.D.
Mainstream medical treatment for Celiac Disease consists of one remedy and one remedy only: stop your intake of gluten. This methodology ignores one of the most important hidden facts about Celiac Disease: during the months, years, or decades of gluten consumption, numerous systems, organs and functions of your body can endure serious, long-lasting damage. Simply adopting a gluten-free diet does not repair the body's compromised organs and pathways.
Stopping your gluten intake is vital, but it is only the first step on the healing path. Changing your diet is like stopping a physical beating: no additional blows are raining down on you, creating further damage. Yet the organs, limbs and bones which suffered the hits desperately need medical attention. In much the same way, the damage of Celiac continues to plague the body long after you enter the gluten-free zone, unless you work with a practitioner with appropriate qualifications and skills to help guide you.
What is Functional Medicine?
Functional Medicine is a comprehensive approach to Celiac designed to correct the long-standing damage created by gluten. Functional Medicine is a sound scientific method that focuses on identifying and correcting the underlying causes of illness and disease. It is founded on the following tenants:
- Each patient is genetically and bio-chemically unique.
- Diagnosis and treatment is customized for each individual patient.
- Treatment targets the underlying causes of illness, not just the symptoms that mask the causes.
- Testing and evaluation is based on "optimal levels," rather than "population norms."
- A powerful emphasis is placed on in-depth understanding of the patient: their life, environment, relationships and needs. As the father of modern medicine, Sir William Osler stated, "It is more important to know which patient has the disease than to know which disease the patient has."
In contrast, allopathic medicine specializes in prescriptions for drugs that mask symptoms while ignoring the underlying causes. Although this financially benefits the pharmaceutical business, it does very little to improve long term health. Functional Medicine desires to uncover the factors that contribute to a disease and create individualized programs to correct the underlying imbalances.
Celiac's Ongoing Legacy
As a practitioner of Functional Medicine, I work in partnership with you to uncover the hidden causes that contribute to your current state of ill health. For patients with Celiac Disease, these problems include:
- Small-intestinal overgrowth with bacteria and/or yeast. (The small intestine is just past the stomach.)
- Hidden parasitic infections.
- Food sensitivities and food allergies.
- Inability to properly digest foods in addition to gluten and gliaden.
- Specific nutritional deficiencies including B12 and other B vitamins, and minerals such as calcium and magnesium.
- Impaired liver detoxification, creating increased sensitivity to medication, chemicals, diet, and environmental toxins.
- Depleted serotonin levels, contributing to low energy and depression.
- Weakened immune system.
How will a visit to a functional medicine doctor be different than a visit to my doctor?
With so many variables active within each patient, I take valuable time to know and understand each of my patients. Lifestyle, exercise, diet, and stress levels play a significant role in Celiac health. It can be challenging to wade through the murky waters of hidden gluten and gliadin intolerance and we help each person become more aware of these issues along with food additives, chemicals, etc. I work closely with our on-staff holistic nutritionist who helps patients make healthier food choices that taste great, and provides emotional support and guidance during the healing process.
In contrast to traditional allopathic medicine, Functional Medicine assists the Celiac patient using a wide array of tests and treatments, in addition to recommending a gluten free diet. An effective Functional Medicine digestive program includes:
- Replacement of deficient digestive enzymes and hydrochloric acid.
- Replacement of natural bacterial flora.
- Removal of pathogenic bacteria, yeasts, and parasites.
- Elimination of any foods that stimulate an immune response (not just IgE-mediated immune response.)
- Healing Amino Acids, nutrients, and herbs that work to heal the damaged intestinal lining.
Vital B Vitamins
Those with Celiac often have addition vitamin and mineral deficiencies because of the mal-absorption that is occurring in the digestive tract due to the sloughing off of the intestinal villi because of the gluten allergy. The most common are B vitamin deficiencies, especially B-12. These deficiencies are easily diagnosed using serum testing, or for less obvious deficiencies, organic acid panels.
In addition, I have found that all of my Celiac patients suffer additional food allergies and intolerances. The most common is dairy intolerance that may not be permanent, sometimes improving after 6 months of a gluten free diet. I measure additional sensitivities using non-traditional testing methods ( these are tests that an allopathic doctor would not usually order), which include IgG testing and other very sensitive measures of cellular immune reactivity to foods.
Fatigue and Celiacs
Fatigue is a very common symptom in Celiac patients, and often caused by one or more of the following:
- Poor nutrition.
- Very weak absorption of macro- and micronutrients.
- Food sensitivities
- Impaired detoxification pathways in the liver and kidney
- Vitamin deficiencies
In conclusion, as a functional medicine practitioner, I approach each patient that I see as a unique individual. I use history, physical exam, and functional lab testing to pinpoint the systems, organs, and hormones that are out of balance. I then use a holistic approach to correcting these areas of imbalance through education, scientifically proven vitamin and herbal therapies, and medication (if needed). In addition, I work with each of my patients to identify the emotional, environmental, and stressful triggers that are contributing to their state of ill health. In this manner, I am able to work on many levels to help each patient reach their goal of ideal or optimal health.
Back to Top
EDUCATION & AWARENESS
To Eat or Not to Eat To Eat or Not to Eat... That is the Question with Oats
To eat or not to eat. That is the question that all of us with celiac disease are asking about oats. Are they contaminated or not? Do they contain gluten? Everyone seems to disagree. Here's some information to help you make the decision whether or not oats should be included in your gluten-free diet.
Oats in their natural form do not contain the gluten protein. However, most mills that produce and store oats also manufacture wheat, making the chances of cross contamination inevitable. In addition, current research shows that approximately 1%- 5% of celiac patients react to oats in their pure form. Although the cause for this reaction is unknown, some literature suggests that a protein in oats can trigger a similar response to gluten.
However, for the rest of us, oats in their natural form that are produced in a gluten-free facility are safe and can be enjoyed!
Bob's Red Mill, for example, has gone to great lengths to ensure that their Whole Grain Rolled Oats are prepared and kept safe from contamination. Their oats are grown, transported and processed in entirely gluten-free environments and tested a number of different ways for gluten. With this level of care given to avoiding gluten contamination, most people with celiac disease should be able to safely eat these oats. The back label of the product explains how the oats are prepared and protected from contamination. The folks at Bob's Red Mill even took the time to explain on their label that some celiacs may not be able to tolerate them. Thanks, Bob!
The best advice I can offer is to take a great deal of care before introducing oats into your diet. There is no way to determine if you will react, so proceed with caution. But remember that with each new manufacturer that produces pure oats, there is hope that celiacs can again enjoy a hearty bowl of oatmeal for breakfast!
Back to Top
Outside of the Classroom: From Field Trips to Slumber Parties
By Abby Schwartz
Sending your celiac child safely out into the world is easy, as long as you plan ahead, ask questions, and are prepared to send along food as needed. Below are some of the social scenarios that your child may encounter, along with suggestions on how to approach them with grace and ease.