Celiac Articles and Information
Celiac Articles and Information Celiac disease is an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats.
The exact cause of celiac disease is unknown. The intestines contain projections (called villi) that absorb nutrients. In undiagnosed or untreated celiac disease, these villi become flattened. This affects the ability to absorb nutrients properly.
The disease can develop at any point in life, from infancy to late adulthood.
Those with a family member with celiac disease are at greater risk for developing the disease. The disorder is most common in Caucasians and those of European ancestry. Women are affected more commonly than men.
There are numerous diseases and conditions associated with celiac disease, including:
Autoimmune disorders such as rheumatoid arthritis and systemic lupus erythematosus
Certain types of intestinal cancer
Miscarriage or unexplained infertility
Osteoporosis or osteopenia
Type 1 diabetes
The symptoms of celiac disease can vary significantly from person to person. This is part of the reason the diagnosis is frequently delayed. For example, one person may have constipation, a second may have diarrhea, and a third may have no irregularity in stools.
A partial listing of gastrointestinal symptoms:
Abdominal distention, bloating, gas, indigestion
Decreased appetite (may also be increased or unchanged)
Diarrhea, chronic or occasional
Lactose intolerance (common upon diagnosis, usually goes away following treatment)
Nausea and vomiting
Stools that float, are foul smelling, bloody, or "fatty"
Unexplained weight loss (although people can be overweight or of normal weight upon diagnosis)
A partial listing of nonintestinal symptoms:
Anemia (low blood count)
Bone and joint pain
Bone disease (osteoporosis, kyphoscoliosis, fracture)
Breathlessness (due to anemia)
Dental enamel defects and discoloration
Growth delay in children
Hypoglycemia (low blood sugar)
Irritability and behavioral changes
Short stature, unexplained
Skin disorders (dermatitis herpetiformis)
Swelling, general or abdominal
Vitamin or mineral deficiency, single or multiple nutrient (for example, iron, folate, vitamin K)
A complete blood count (CBC) may show signs of anemia. It is important to determine the cause if anemia is detected.
An increase in alkaline phosphates level may indicate bone loss.
Low cholesterol and albumin levels may be signs of malabsorption and malnutrition.
Mildly raised liver enzymes and abnormal blood clotting may also be noted.
Blood tests can detect several special antibodies. The health care provider will order these antibody test if celiac sprue is suspected. If the tests are positive, upper endoscopy is usually performed to sample a piece of tissue (biopsy) from the first part of the small intestine (duodenum).
Genetic testing of the blood is also available to help determine who may be at risk for celiac disease.
An endoscopy with enteroscopy, particularly of the lower sections of the intestine most commonly affected, will show a flattening of the villi
A follow-up biopsy or blood work may be ordered several months after the diagnosis and treatment. These confirm the disease. Normal results mean that you have responded to treatment, thereby confirming the diagnosis. However, this does not suggest that the disease has been cured.
You must follow a lifelong gluten-free diet. This allows the intestinal villi to heal. Eliminate foods, beverages, and medications that contain wheat, barley, rye, and possibly oats.
You must read food and medication labels carefully to look for hidden sources of these grains and their derivatives. Since wheat and barley grains are found abundantly in the American diet, keeping to this diet is challenging. With education and planning, you will achieve the goal of healing.
You should NOT begin the gluten-free diet before a diagnosis is made. Doing so will affect future testing for the disease.
The health care provider may prescribe vitamin and mineral supplements to correct nutritional deficiencies. Occasionally, corticosteroids (such as prednisone) may also be prescribed for short-term use or if you have refractory sprue. Following a well-balanced, gluten-free diet is generally the only treatment needed to stay well.
Upon diagnosis, get help from a registered dietitian who specializes in celiac disease and the gluten-free diet. A support group may also help you cope with the disease and diet.
For additional information and support, see the organizations listed in celiac disease resources.
Removing all damaging grains from the diet is the most important measureÂ you can take to become healthy. If you follow the diet strictly, youÂ can expect to lead a long, healthy life --Â ifÂ permanent damage did not occur before diagnosis.
You must carefully and continuously follow the gluten-free diet. When untreated, the disease can cause life-threatening complications.
Delaying diagnosis or not following the diet puts you at risk for related conditions such as:
Certain types of intestinal cancer
Call your health care provider if you have symptoms of celiac disease.
Because the exact cause is unknown, there is no known way to prevent the development of celiac disease. However, being aware of the risk factors (such as having a family member with the disorder) may increase your chances of early diagnosis, treatment, and a long, healthy life.
Hutchinson JM, Robins G, Howdle PD. Advances in coeliac disease. Curr Opin Gastroenterol. 2008;24:129-134.
Green PH, Cellier C. Celiac disease. N Engl J Med. 2007;357:1731-1743.
More Information on This Topic
News & FeaturesReview Date: 5/27/2008
Reviewed By: Christian Stone, MD, Division of Gastroenterology, Washington University in St. Louis School of Medicine, St. Louis, MO. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
The Expense of Eating With Celiac Disease
G. Paul Burnett/The New York Times
Kelly Oram and his daughter Micaela make gluten-free bread at home. Mr. Oram suffered for years from celiac disease before a doctor thought to test him for it.
YOU would think that after Kelly Oram broke more than 10 bones and experienced chronic stomach problems for most of his life, someone (a nurse? a doctor?) might have wondered if something fundamental was wrong with his health. But it wasn't until Mr. Oram was in his early 40s that a doctor who was treating him for a neck injury became suspicious and ordered tests, including a bone scan.
Celiac disease damages the lining of the small intestine, making it difficult for the body to absorb nutrients. Victims may suffer from mild to serious malnutrition and a host of health problems, including anemia, low bone density and infertility. Celiac affects one out of 100 people in the United States, but a majority of those don't know they have the disease, said Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Minnesota who has been studying the disease for two decades. The disease can be detected by a simple blood test, followed by an endoscopy to check for damage to the small intestine.
Seven years after receiving his diagnosis, Mr. Oram, who is married and has one daughter, is symptom-free, but the cost of staying that way is high. That's because the treatment for celiac does not come in the form of a pill that will be reimbursed or subsidized by an insurer. The treatment is to avoid eating products containing gluten. And gluten-free versions of products like bread, pizza and crackers are nearly three times as expensive as regular products, according to a study conducted by the Celiac Disease Center at Columbia University.
Unfortunately for celiac patients, the extra cost of a special diet is not reimbursed by health care plans. Nor do most policies pay for trips to a dietitian to receive nutritional guidance.
In Britain, by contrast, patients found to have celiac disease are prescribed gluten-free products. In Italy, sufferers are given a stipend to spend on gluten-free food.
Some doctors blame drug makers, in part, for the lack of awareness and the lack of support. "The drug makers have not been interested in celiac because, until very recently, there have been no medications to treat it," said Dr. Peter Green, director of the Celiac Disease Center at Columbia University. "And since drug makers are responsible for so much of the education that doctors receive, the medical community is largely unaware of the disease."
As awareness grows and the market expands, perhaps the prices of gluten-free products will come down. Meanwhile, if you suffer from the disease, here are some ways to keep your costs down.
When people first learn they have celiac disease, they tend to stock up on gluten-free versions of breads, crackers and pizza made from grains other than wheat, like rice, corn and buckwheat. But that can be expensive and might not even be that healthy, since most gluten-free products are not fortified with vitamins.
"The most important thing to do after being diagnosed is to get a dietary consultation," Dr. Murray said. With planning, you can learn to base your diet on fruits, vegetables, rice and potatoes. "I have some patients who rarely use those special gluten-free products," he said.
Get in the habit of reading labels, advises Elaine Monarch, executive director of the Celiac Disease Foundation, a nonprofit organization in Studio City, Calif. Soy sauce, for instance, often has wheat protein as a filler. But Ms. Monarch found a brand of light soy sauce at her local grocery with no wheat that cost much less than one specifically marked as gluten-free. "There are often alternatives to specialty products, but you have to look," she said.
Gluten-free bread is more expensive than traditional bread and often less palatable. And that holds for many gluten-free items. Some people, including Mr. Oram, end up buying a bread machine and making their own loaves. Nicole Hunn, who cooks gluten-free meals for her family of five and just started the Web site glutenfreeonashoestring.com, avoids mixes, which she says are expensive and not that tasty, and instead bakes with an all-purpose gluten-free flour from a company called Bob's Red Mill, which can be used in place of wheat flour in standard recipes.
If you're too busy to cook, look for well-priced gluten-free food at large chains like Whole Foods Market and Trader Joe's. "Trader Joe's now carries fantastic brown rice pasta that is reasonably priced and brown rice flour tortillas that can sub for bread with a variety of things," says Kelly Courson, co-founder of the advice site CeliacChicks.com. Ms. Courson put out a Twitter message to her followers and learned that many were fans of DeBoles gluten-free pastas, which can be bought in bulk on Amazon, and puffed brown rice cereal by Alf's Natural Nutrition, just $1 a bag at Wal-Mart.
Finally, it may be worthwhile to join a celiac support group. You can swap cost-cutting tips, share recipes and learn about new products. Many groups invite vendors to bring gluten-free products to meetings for members to sample - members can buy items they like at a discount and skip the shipping charges. Support groups typically have meetings, as well as newsletters and Web sites where you can post questions. Groups to check out include the Celiac Disease Foundation and the Gluten Intolerance Group of North America.
Finally, if you itemize your tax return and your total medical expenses for the year exceed 7.5 percent of your adjusted gross income, you can write off certain expenses associated with celiac disease. You can deduct the excess cost of a gluten-free product over a comparable gluten-containing product.
Let's say you spend $6.50 on a loaf of gluten-free bread, and a regular loaf costs $4; you can deduct $2.50. In addition, you can deduct the cost of products necessary to maintain a gluten-free diet, like xanthan gum for baking. If you mail order gluten-free products, the shipping costs may be deductible, too. If you have to travel extra miles to buy gluten-free goods, the mileage is also deductible. You'll need a doctor's letter to confirm your diagnosis and your need for a gluten-free diet, and you should save receipts in case of a tax audit.
Do you have a flexible spending account at work? Ask the plan administrator if you can use those flex spending dollars on the excess cost of gluten-free goods - many plans let you do this. For more on tax deductions, go to the tax section of the Celiac Disease Foundation's Web site.
Yes, managing the disease is a hassle. But untreated celiac disease can wreak havoc with your health. A study published in the July issue of the journal Gastroenterology found that subjects who had undiagnosed celiac were nearly four times as likely to have died over a 45-year period than subjects who were celiac-free.
"Sometimes I resent how time-consuming it is to cook from scratch," Ms. Courson of CeliacChicks.com said. "But I remind myself that my restrictions actually help keep me in line, more than the next person with unhealthy foods readily available."
Protein-fibre combo offers 'promising' gluten-free options
By Stephen Daniells, 18-May-2009
Related topics: Science & Nutrition, Cereals and bakery preparations, Proteins, non-dairy
Adding protein and fibre sources like pea protein and Psyllium fibre may improve the physical structure of gluten-free dough, and boost the nutritional content, says a new study.
Writing in Food Research International, researchers from the University of Milan and Michigan State University state that Psyllium fibre enhanced the physical properties of the dough by forming a film-like structure. Combining this with a continuous protein phase was found to be "critical for the workability of a gluten-free dough", they said.
"Generally, the more complex experimental formulations (containing corn starch, amaranth flour, pea isolate and Psyllium fibre) investigated in this research looked promising in terms of final bread technological and nutritional quality, even when compared to commercial mixtures already present on the market," wrote the authors, led by Manuela Mariotti.
The study taps into the growing trend for enhanced gluten-free foods, a rapidly growing market. According to a recent report from Packaged Facts, the gluten-free market has grown at an average annual rate of 28 per cent since 2004, when it was valued at $580m, to reach $1.56bn last year. Packaged Facts estimates that sales will be worth $2.6bn by 2012.
Coeliac disease, a condition characterized by an intolerance to gluten in wheat, is reported to affect up to 1 per cent of children and 1.2 per cent of adults, according to a study in the BMJ's Gut journal.
Using corn starch, amaranth flour, pea isolate, and Psyllium fibre, Mariotti and her co-workers formulated six types of gluten-free dough, containing different levels of the ingredients: 0 or 40 per cent amaranth flour, 1 or 6 per cent pea isolate, and 0 or 2 per cent Psyllium fibre. Corn starch levels were varied in response to the amounts of the other ingredients used.
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In terms of handling and workability, the researchers found that the worst product was, made mainly of corn starch (94 per cent), while replacing 2 per cent corn starch with 2 per cent Psyllium fibre improved both the structure and workability of the dough, "indicating that Psyllium fiber, despite the higher amount of water required to form a dough, could act as an improver of the cohesion of starchy matrix," said the researchers.
The best performance was observed for the formulations containing all four ingredients: 57 per cent corn starch, 40 per cent amaranth flour, 1 per cent pea isolate, and 2 per cent Psyllium fibre; or 52 per cent corn starch, 40 per cent amaranth flour, 6 per cent pea isolate, and 2 per cent Psyllium fibre.
The researchers also noted that staling of the new formulations would be delayed.
"Psyllium fiber generally enhanced the physical properties of the doughs, due to the film-like structure that it was able to form, and the most complex among the experimental formulations looked promising in terms of final bread technological and nutritional quality even when compared to two different commercial GF mixtures," concluded the researchers.
Source: Food Research International
Published online ahead of print, 7 May 2009, doi:
"The role of corn starch, amaranth flour, pea isolate, and Psyllium flour on the rheological properties and the ultrastructure of gluten-free doughs"
Authors: M. Mariotti, V.G. Celoria, M. Lucisano, M.A. Pagani, P.K.W. Ng
University Of The Basque Country Researcher Studies Genes Associated With Celiac Disease
For her PhD thesis, the researcher studied the genetic profiles of 175 cases of patients suffering from celiac illness, in order to determine which genes are related to the disease and to study diagnostic methods.
The objective of this research was to identify the genes associated with celiac disease. The author of the PhD thesis is Ms Itziar Zubillaga Azpiroz. Her thesis was entitled, Molecular genetic analysis of celiac disease and its contribution to diagnosis. It is currently known that 40% of the genetic tendency to contracting the illness is due to Class II HLA genes specifically to HLA-DQA1 and HLA-DQB1 genes. In her work, Ms Zubillaga analysed HLA Class II genes in a number of celiac patients and she showed once again that the presence of HLA-DQA1, HLA-DQB1 and HLA-DRB1 genes confers a genetic susceptibility to contracting the disorder. The data obtained from the analysis confirmed that, in the case of patients analysed, there is a genetic imbalance in these genes.
The precise analysis of these genes enabled the researcher to produce a graphical-format gradient of the genetic risk of suffering from the disorder as a function of the Class II HLA genes carried by the individual. The greatest genetic risk occurs when the patient is a carrier of the two susceptible genes; carriers of a single copy of the HLA-DQ2 and HLA-DQ8 molecules are at medium risk and, finally, there are those carriers of at least one of the HLA genes that code for the HLA-DQ2 molecule.
The literature published shows that 90-95% of patients with celiac disease have illness-related HLA genes. 90% of these are carriers of the HLA-DQ2 molecule. From an overall perspective, the thesis author confirmed that most of the patients studied for the research (96.56%) were genetically characterised as being carriers of the HLA genes associated to celiac disease i.e. a greater percentage than that cited in the literature.
Contribution to diagnosis
Focus was also on determining to what extent intestinal biopsy in the initial diagnosis of the disease can be substituted by the joint use of serological markers and genetic markers. Results showed that this combination of markers provides a positive predictive value of 100% and a negative predictive value of 97%, which clearly shows that the combination put forward is a valid alternative to intestinal biopsy. All those patients in which celiac disease was suspected and who showed both serological and genetic markers fixed for the diagnosis of the disease in these analyses proved in the end to be celiac sufferers.
Genetic disease and autoimmune system
Celiac disease is caused by a permanent intolerance to proteins present in certain cereals and occurs in genetically prone individuals. This intolerance presents itself as chronic inflammation of the small intestine. The results support the view that celiac disease is a genetic pathology, given that 10% of first-order relatives of sufferers also have the disorder. The current understanding is that of an autoimmune disease that can be treated effectively by excluding gluten from the diet.
Source: Elhuyar Fundazioa
About Gluten-Free Source
Location: 20 S. Baltimore St., Dillsburg
Contact: 432-5100 or www.glutenfreesource.com
Hours: 9 a.m. to 6 p.m. Tuesday through Thursday, 9 a.m. to 8 p.m. Friday, and 9 a.m. to 3 p.m. Saturday
Details: All the products in the store are gluten-free. Fresh-baked goodies are sold three out of four weekends a month. Call or visit the Web site for specific dates. Inventory includes everything from cereal to cake mix.
On the Web
On the shelf
· "Living Gluten Free for Dummies" (For Dummies 2006) by Danna Korn
· "Gluten Free Bible" (Owl Books 2005) by Jack Peters Lowell
About celiac disease
What is it? Celiac disease is a genetic disorder that affects children and adults. A person with celiac disease is unable to eat foods that contain gluten, which is found in wheat and other grains. The gluten sets off an autoimmune reaction that causes the destruction of the villi in the small intestine. People with celiac disease produce antibodies that attack the intestine, causing damage and illness.
Diagnosis: Celiac disease diagnosis is done with a blood test and a biopsy of the small intestine. Treatment: There is no cure, but many people diagnosed with celiac disease can lead healthy, normal lives by following a gluten-free diet, which means no products that come from wheat, rye or barley.
What to watch for
While grains such as wheat, barley and rye contain gluten, other products such as oats are a concern for many people with celiac disease because they are processed in the same equipment.
Rachel Fleming said to also look for words such as Monosodium glutamate (MSG), caramel coloring, modified food starch and artificial flavoring. These products might or might not contain gluten. You have to ask specific questions to the manufacturer. In July 2004, the U.S. House of Representatives passed the Food Allergen Labeling and Consumer Protection Act.
The legislation required the top eight food allergens (milk, eggs, peanuts, tree nuts, fish, shellfish, wheat and soy) to be listed on food labels by Jan. 1, 2006. By January of 2008, the FDA is required to develop rules for the use of the term "gluten free."
One out of every 133 Americans has celiac disease, according to the University of Maryland Center for Celiac Research.
Two to 3 million Americans have celiac disease, according to Dr. Stephen Wangen, founder of the IBS Treatment Center in Seattle
Ten to 20 million Americans are gluten intolerant, most of which are undiagnosed, according to Dr. Wangen.
The following recipes are taken from the book "Tell me what to Eat if I have celiac disease," (Career Press, $12.99).
Chocolate buttermilk cake
3/4 cup oil
2 cups sugar
2 teaspoons vanilla
3-4 (1-ounce) squares baking chocolate
1/2 teaspoon xanthan gum
2 cups fern soya powder
1/2 cup potato starch flour
2 teaspoons gluten free baking powder
1 teaspoon baking soda
1 1/2 sticks margarine or butter, melted
1 cup milk
Preheat oven to 350 degrees. Melt chocolate and let cool. Cream oil, sugar and vanilla. Beat in butter. Add eggs, blending well. Add melted chocolate and mix. In separate bowl blend flours, xanthan gum, baking powder and baking soda. Add dry ingredients to chocolate mixture, alternating with the milk. Blend well. Pour into greased 11-by-8-inch cake pan. Bake 30-45 minutes, or until knife comes out clean.
1/2 cup butter
1/2 cup butter-flavored Crisco
1 teaspoon vanilla extract
4 cups powdered sugar
4 tablespoons milk
Cream together butter and Crisco. Add vanilla and blend well. Add 1 cup of powdered sugar at a time, alternating with 1 tablespoon milk, until all is blended. Frost after cake has cooled.
Italian bacon and tomato risotto
1/2 pound sliced bacon
1 onion, chopped
Cherry tomatoes, halved (about a handful)
14 ounce gluten free chicken broth
1/2 cup milk or milk substitute
1 teaspoon dried parsley
2 cups instant rice
1/2 cup grated cheese
Cook sliced bacon and chopped onion in skillet. Drain. Stir in tomatoes, chicken broth, milk, dried parsley and instant rice. Bring to boil over medium heat. Simmer 5 minutes over low heat. Add grated cheese, to taste. Let stand 5 minutes. Serve topped with grated cheese.
Celiac Disease Provides Clues To Solving Autoimmunity
Researcher Alessio Fasano reports new findings in the battle against chronic illnesses, Celiac disease
Source: Cell Science Systems
On Thursday August 6, 2009, 6:00 am EDT
DEERFIELD BEACH, Fla., Aug. 6 /PRNewswire/ -- According to an article published in Scientific America, a study of potentially fatal food-triggered disease has uncovered a process that may contribute to many autoimmune disorders.
The epidemiology of celiac disease that once was thought to be in the rage of 1 in 10,000 is now known to be in the neighborhood of 1 in 133, although not all individuals with the disease face the same set of symptoms that makes celiac and other food-related conditions so dangerous and widespread.
Dr. Alessio Fasano, Medical Director with the Center for Celiac Research at the University of Maryland Medical Center, has attributed gluten intolerance to classic gastrointestinal problems including diarrhea, bloating, and indigestion and leading to disruptions in nutrient absorption. For example, failure to properly absorb iron may lead to anemia, whereas failure to absorb folate may lead to a variety of neurological conditions. Malabsorption of specific nutrients may lead to such diverse conditions as osteoporosis, joint pain, chronic fatigue, skin lesions (eczema, psoriasis), epilepsy, dementia, schizophrenia, depression, and seizures. In addition to the above conditions, the following diseases or conditions are considered autoimmune in nature: diabetes, obesity, multiple sclerosis, breast cancer, acute ischemic heart disease, and rheumatoid arthritis.
As researchers have elucidated the precise mechanisms involved in the cascade leading to what is considered autoimmune disease (where the body actually attacks its own tissues), it is apparent that both proteins from foods as well as several genetic components are involved.
"A growing body of evidence suggests that virtually the same trio of factors underpins most, and perhaps all, autoimmune diseases: an environmental substance that is presented to the body, a genetically based tendency of the immune system to overreact to the substance, and an unusually permeable gut," said Dr. Fasano.
The crux of the process involves a leaky gut where partially digested food proteins (the environmental factor) pass or leak through the gut to interact with genetically-sensitive elements of the immune system setting off a cascade of immune reactions.
Fasano has identified a specific protein, zonulin, involved in controlling the spaces at the tight junctions in the gut wall, which is partially responsible for the leaky gut syndrome. He and other researchers are looking for drug therapies to prevent the initiation of the autoimmune cascade.
Since this cascade is triggered by a number of food proteins, another viable and proven approach is to identify the offending culprits and eliminate them from your diet. Cell Science Systems has developed a laboratory technology, the ALCAT Test, involving whole blood which is incubated with various foods to identify specific foods that trigger food intolerance. The solution then involves not eating those offending foods.
Cell Science Systems has hundreds of examples of individuals who have successfully reduced or eliminated autoimmune disease symptoms by simply avoiding certain foods for a specified period of time.
Annette, an ALCAT tester, suffered from multiple sclerosis symptoms for decades. "It was as if I was drunk but I do not drink. Turning over in bed was nearly impossible to do," said Annette. After taking the ALCAT Test and following the recommended rotation diet, her symptoms immediately began to subside. Before long, she realized it had been over a month since her last spell of symptoms. According to her husband, "It was like being married to someone else's wife."
Fasano, Alessio (2009, July 27). Celiac Disease Insights: Clues to Solving Autoimmunity. Scientific American, Retrieved on August 2, 2009 from http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights
About Cell Science Systems
Cell Science Systems (CSS) is a life sciences company and the worldwide market leader in food sensitivity testing as the maker of The ALCAT Test . ALCAT identifies cellular reactions to over 300 foods and chemicals. These inflammatory reactions are linked to chronic health problems like obesity and diabetes, as well as skin, heart, joint, and digestive disorders. Located in Deerfield Beach, Florida, CSS is a FDA-inspected and registered, cGMP medical device manufacturer and operates a CLIA-certified laboratory.
Peace Arch News
Learning to say goodbye to gluten
David Spak is cycling from Victoria to Edmonton to raise money for the fight against celiac disease, which his five-year-old nephew, Kyle, suffers from.
0 Comments When Kyle Spak was two, he began to show signs of malnutrition.
Pale and gaunt, the youngster was going to the bathroom up to 15 times a day
As he lost weight, the bones in his back became clearly visible and the skin on his bottom sagged.
Low energy meant he lost his desire to walk, preferring instead to be pushed in a stroller, and would watch his friends play from the sidelines.
Parents Bernie and Michele were baffled, making numerous trips to the doctor for answers. They never got any - the physician brushed off Kyle's distended stomach as simply "toddler's tummy."
Desperate to get to the root of the problem, the couple packed up and went to BC Children's Hospital. Bernie will never forget the words of the doctor who saw them there.
"We're very concerned," he had said, adding he would be looking for a tumour.
"The ground falls from under your feet," Bernie recalled.
Over the next 48 hours, Kyle went through a range of testing.
The first day was a relief for the South Surrey family, who was informed cancer had been ruled out. The symptoms pointed instead towards celiac disease.
Those with the condition are unable to digest gluten, a protein found in barley, rye and wheat that damages the surface of the small intestine, resulting in the body's inability to absorb nutrients. The Canadian Celiac Association (CCA) estimates one in 133 Canadians are affected.
A blood test and subsequent biopsy confirmed the suspicions, and, 10 months after his first symptoms, Kyle was officially diagnosed. The news meant he would no longer be able to eat foods with gluten, some of the most basic of which include bread, pastries and pastas.
"At the beginning it was really daunting," Michele said. "What do we feed him?"
From reading up on the gluten-free diet, they learned about gluten alternatives, what food to avoid and what is safe to eat.
"What's important is to focus on what you can eat rather than what you can't eat," Bernie said.
Within two weeks of following the restricted diet, Kyle's health began improving. In just under six weeks, he gained five pounds.
Now, 2½ years later, Kyle is as healthy as any other five-year-old.
"There's no cure but the gluten-free diet puts you on the right path," Bernie said, noting he takes a multivitamin to get the nutrients he's missing out on. "He's a normal kid now."
But ensuring he stays that way can be challenging.
Ingesting even the smallest trace of gluten can cause Kyle to be sick. Within 20 minutes, he complains of stomach pains, and subsequently experiences diarrhea and behavioural changes.
While the Spaks, who also have a young daughter, Nicole, can control what their son eats at home - where they make a lot of their own food, have a separate toaster for Kyle and carefully prepare his meals to avoid cross-contamination - the same can't always be guaranteed in other environments.
Even a shared toy can affect Kyle, if a child with granola-bar crumbs on his hands plays with it, then Kyle touched it and puts his fingers in his mouth.
Birthday parties can also be difficult, as he is unable to eat the same treats other kids enjoy.
"He gets told 'no' a lot in a day," Michele said.
To make sure he doesn't miss out, she calls ahead to find out what colour the birthday cake will be, and bakes a similar cupcake for Kyle to take with him.
She does the same for dinner parties, making a meal ahead of time to ensure Kyle has the same experience as everyone else at the table
"If they say they're making lasagna, I make lasagna," she said. "We don't feel he's been without."
For the most part, the Spak parents - both of whom carry a gene for the genetic disease - said people are accommodating when they learn of Kyle's diet. Chefs at restaurants have prepared food to meet his needs, and a preschool teacher even made gluten-free playdough, so he could join in the fun.
"It's your responsibility to ask the questions, read the labels," Michele said.
Now, the couple is thinking about Kyle's future, and doing everything they can to make it easier.
Having joined the local chapter of the CCA, they hope to spread awareness about the disease so more restaurants can consider offering gluten-free menus.
Bernie said he would also like to see gluten-free diets taught in culinary school, so chefs know how to prepare the appropriate meals.
Bernie is also on a gluten-free diet, partially so he can test out situations - such as going to a buffet in which all the food contains gluten - and help his son through them in the future.
"We're trying to build an arsenal of tools so when he gets older, (he knows how to) handle these issues," he said. "As a culture, we experience so much through food.
Another person by Kyle's side is his uncle, Bernie's brother, David Spak.
The Edmonton resident is currently participating in Cycling for Celiacs, an 11-day bike ride Aug. 6-16 from Victoria to Edmonton, where David lives.
"He just wanted to figure out a way he could help contribute," Bernie said.
David raised $2,500 to take part, and is continuing to collect donations, which can be made at www.cyclignforceliacs.org
Kyle was able to cheer his uncle on last Friday, when he and his family visited the cycling team during a stop in Hope.
Michele said Kyle thinks the world of his uncle, and recently asked, "Is uncle Dave going to ride so I can eat wheat?"
"Kyle thinks he's a superhero," she said.
Celiac is family matter
BY Elissa Dickey, From the kitchen of Camille Abel
Published on Sunday, August 09, 2009
A sly smile crept across Rylan Abel's face when his mother told a nurse the 8-year-old had convinced a friend's mom he could have pizza.
For Rylan, his twin sister, Rhiannon, and older sister, Ashley, 10, pizza isn't just junk food. The tasty treat turns troublesome for the trio because they suffer from celiac disease.
As the start of the school year approaches, many parents are worrying about what kinds of grades their kids will get. But parents like Camille and Jason Abel also have to fret about what kinds of foods their kids will eat.
Celiac disease is a genetic, autoimmune disease in which the body attacks gluten - which is found in wheat, barley and rye - causing lesions in the intestinal walls. Eating foods with gluten can cause a host of symptoms and malnourishment because the disease interferes with the body's ability to absorb nutrients. In the long term, celiac disease could even lead to serious illnesses, such as intestinal cancer.
So the Abel children do what they can to avoid all foods containing gluten.
For their mom, that means three-hour trips to the grocery store as she scrutinizes every label. She bakes and freezes gluten-free bread in her three breadmakers.
The kids eat mostly meats, fruits and vegetables. They've found foods they enjoy - for example, the siblings go through a box of gluten-free Chex each morning.
But the twins, who are starting third grade at C.C. Lee Elementary, miss Toaster Strudels. All three children miss Doritos. Ashley, who will be in fifth grade at C.C. Lee, misses eating tacos.
"I can eat up to eight tacos," she said, beaming proudly.
Rhiannon said the hardest part is watching her friends eat fresh-baked cookies, cupcakes or pizza.
But Camille Abel said she tries to bake gluten-free goodies for her kids so they can have some normalcy.
Despite the difficulties, Abel feels fortunate that her kids were diagnosed at such a young age. Most people, she said, are in their 40s before they are diagnosed.
Their diagnoses came this spring. It all started when Rhiannon got a rash inside her elbows that wouldn't go away. Allergy testing determined she was intolerant to dairy and gluten. Then Ashley started getting the rash, and testing determined she was dairy and gluten intolerant as well.
That's when Camille Abel heard about celiac disease from a family member. She started doing research and noticed that Ashley matched many symptoms. After her pediatrician tested her, Ashley was referred to Dr. Stephen Nanton, a pediatric gastroenterologist from Avera McKennan Hospital in Sioux Falls.
Ashley was diagnosed with celiac disease with a throat scope and an intestinal biopsy. At that time, doctors also placed a capsule that released a tiny camera that took pictures of her intestine.
Because the disease is genetic, Nanton advised testing the twins as well as their parents, though Abel and her husband were negative.
Abel said her kids are pretty vigilant about what they eat now because they know how they feel when they eat gluten.
Before Ashley was first diagnosed with celiac, Camille Abel said she had to push her pediatrician to test her daughter. A lot of education is still needed on the disease, and Abel advises other parents to be equally persistent.
"All you can do is be your own children's advocate," she said.
· Do your research; read labels; if you haven't heard of an ingredient, look it up. When you're in doubt, every product has an 800 number - call it.
· Educate your children's teachers and parents of their friends about the disease, and the damage it can cause. "One little crumb can cause a lesion."
· Tell your kids they can't swap foods with friends.
· Abel freezes gluten-free chocolate cupcakes and sends them with her kids when they go to a birthday party.
· If you make a mistake, move on. "All you can do is the best you can."
Gluten-free, dairy-free chocolate frosted brownies:
· 1 1/3 cups flour (mix equal parts of tapioca, almond and rice flour)
· 1/2 teaspoon salt
· 1 teaspoon baking powder
· 1 cup Crisco or nonmilk margarine
· 1 1/2 cup unsweetened cocoa powder
· 2 cups sugar
· 4 eggs at room temperature
· 1 1/2 teaspoon vanilla
· 2 cups broken walnut pieces (optional)
· 1/4 cup margarine or Crisco
· 1/2 cup cocoa powder
· 1 teaspoon vanilla
· 3 1/2 cups sifted powdered sugar
· 1/3 cup rice milk (or soy, etc.)
Preheat oven to 350. Grease 9-by-13-inch pan. With a wire whisk, stir flour, salt and baking powder together. Mix well. Set aside. Melt butter or margarine, or soften Crisco. Stir in cocoa powder, and mix well. Add sugar. Beat in eggs, one at a time. Stir in vanilla. Add premixed flour mixture. Mix well. Add walnuts if desired. Bake in pan for 25-30 minutes. Remove from oven and cool. Ice with frosting when cool.
Frosting: Soften butter or Crisco. Then add cocoa powder, vanilla, milk and sifted powdered sugar. Mix well with a wire whisk. Spread over cooled brownies.
Alternative grains may boost coeliac nutrition
By Stephen Daniells, 04-Aug-2009
Related topics: Science & Nutrition
Replacing standard gluten-free flours with those made from 'alternative' grains like oats and quinoa may improve the nutritional profiles, says new research from NY.
Substitution with the alternative flour sources was found to improve intakes of protein, iron, calcium and fibre, according to researchers from the Celiac Disease Center at Columbia University in New York.
"By adding three servings of gluten-free alternative grains, the nutrients (fiber, thiamine, riboflavin, niacin, folate and iron) are improved," wrote the researchers, led by Anne Lee, in the Journal of Human Nutrition and Dietetics.
"By adding the alternative grains, the amount of protein, fat and calories from these foods would also be added to the diet," they added.
The findings could lead to enhanced products for the blossoming gluten-free food market, worth almost $1.6bn last year, according to Packaged Facts, and experiencing a compound annual growth rate of 28 per cent over four years.
Sufferers of coeliac disease have to avoid all gluten in their diet, but diagnosis is not the only factor. Other sectors of the population, such as those who have self-diagnosed wheat or gluten intolerance or who believe gluten-free to be a healthier way of eating, are strong drivers.
But against this backdrop of popularity, there have been concerns that some gluten-free products on the market made with rice, corn and potato flour and xanthan or guar gum to improve texture have sub-optimal levels of essential nutrients.
It should be noted that, although oats do not actually contain gluten there is some concern over their presence in foods since they are commonly contaminated during processing with gluten from wheat, rye or barley, according to Coeliac UK.
Lee and her co-workers performed a retrospective review of the diet history of 50 randomly selected people with coeliac disease in order to establish a 'standard' gluten-free dietary pattern. Analysis of this pattern revealed that almost 40 per cent of meals and snacks contained no grains, while of the 60 per cent containing grains, rice was the grain most often used.
The dieticians then devised an 'alternative' gluten-free dietary pattern by incorporating grains that were naturally gluten-free, or gluten-free products made from 'alternative' flours, including as oats, quinoa, and high fibre gluten-free bread
"The inclusion of alternative grains or grain products provided a higher nutrient profile compared to the standard gluten-free dietary pattern," explained the researchers.
"The grains used in the present study are widely available and often were less expensive," they wrote. "Therefore, altering the grain in the diet could potentially increase dietary compliance by reducing the economic burden of the diet.
"Because the present study focused only on the nutritional analyses of the two diets, the impact of the alternative pattern on dietary compliance, patient acceptability and long-term nutritional status warrant further study," they said.
ConAgra looks into the past
At the recent IFT Annual Meeting and Food Expo in Anaheim, ConAgra Mills announced its development of a proprietary blend of ancient gluten-free grains and tapioca starch.
The new flour reportedly has good nutritional properties, as well as good product characteristics. ConAgra Mills tapped its portfolio of naturally gluten-free ancient grains, like amaranth, quinoa, sorghum, millet and teff.
Source: Journal of Human Nutrition and Dietetics
August 2009, Volume 22, Issue 4, Pages 359-363, doi: 10.1111/j.1365-277X.2009.00970.x
"The effect of substituting alternative grains in the diet on the nutritional profile of the gluten-free diet"
Authors: A.R. Lee, D.L. Ng, E. Dave, E.J. Ciaccio, P.H.R. Green
Gluten-free diet not friendly to gut bacteria: Study
By Stephen Daniells, 19-May-2009
Related topics: Science & Nutrition
Following a gluten-free diet may be detrimental to gut health, which may also affect immune health, according to a new study from the Spanish National Research Council.
According to results of a small study with 10 people consuming a gluten-free diet, populations of beneficial gut bacteria, such as Bifidobacterium and Lactobacillus, decreased, while counts for Enterobacteriaceae and Escherichia coli increased.
"Thus, the gluten-free diet may constitute an environmental variable to be considered in treated coeliac disease patients for its possible effects on gut health," wrote the authors in the British Journal of Nutrition.
Coeliac disease, a condition characterized by an intolerance to gluten in wheat, is reported to affect up to 1 per cent of children and 1.2 per cent of adults, according to a study in the BMJ's Gut journal.
"Coeliac disease is a permanent intolerance to cereal gluten proteins and the only therapy for the patients is to adhere to a life-long gluten-free diet (GFD)," explained the authors, led by Giada De Palma.
According to a recent report from Packaged Facts, the gluten-free market has grown at an average annual rate of 28 per cent since 2004, when it was valued at $580m, to reach $1.56bn last year. Packaged Facts estimates that sales will be worth $2.6bn by 2012.
The Spanish researchers analysed the gut microflora of ten healthy subjects with an average age of 30 assigned to consume a gluten-free diet for one month. Consumption of the gluten-free diet did not change significantly the normal dietary intakes for the volunteers, except for polysaccharides, which were reduced.
Analysis of the participants' faeces showed that Bifidobacterium, Clostridium lituseburense and Faecalibacterium prausnitzii populations decreased following the gluten-free diet patter, while populations of Enterobacteriaceae and Escherichia coli increased.
Markers of immune health, such TNF-alpha, interferon-gamma, interleukin-10 (IL-10) and IL-8, which would be produced when the host's immune system is challenged, were also reduced following consumption of the gluten-free diet.
"Therefore, the GFD led to reductions in beneficial gut bacteria populations and the ability of faecal samples to stimulate the host's immunity," concluded the researchers.
Products aimed at gut health have traditionally been much more popular in Europe than North America, but this is changing as Americans embrace the idea of boosting gut health via foods and beverages.
Europe still leads the way in terms of product launches and market value, but North America is catching up fast, due in part to the remarkable success of Danone's DanActive in North America. The gut health product was launched there in 2005 and built on its Activia presence.
Source: British Journal of Nutrition
Published online ahead of print, First View article, doi:10.1017/S0007114509371767
"Effects of a gluten-free diet on gut microbiota and immune function in healthy adult human subjects"
Authors: G. De Palma, I. Nadal, M.C. Collado, Y. Sanz
s different than celiac disease. You can be allergic to gluten and not have celiac disease.
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