Posts Tagged ‘Celiac’
Celiac Disease
May 30th, 2010 | 
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I entered this video in the 2009 SEVAs (Student Educational Video Awards). I won the SEVA for the 9-12 grade documentary category. It is about Celiac Disease, which I was diagnosed with about three years ago. I hope you like it!
Duration : 0:2:36
Do you suffer from wheat allergies or have celiac disease?
Learn to enjoy meals again with Gluten Free recipes.
If you’ve just been told that you or a family member has celiac disease, it’s likely your head is spinning with information overload and you’re in a daze of disbelief. A celiac diagnosis isn’t the worst thing but it can feel like the end of your world—at first.
I was diagnosed over ten years ago by a gastroenterologist who didn’t offer any guidance about how to live my life gluten free. Although I commend him for finally discovering the reason behind the ailments that had stumped doctors for many years, when he informed me that I had to change my lifestyle, he didn’t include instructions on how to do it. Since then, I’ve spoken to celiac groups and taught gluten-free cooking classes around the country and I can confirm my experience was not unique. People are often left with more questions than answers after their diagnosis and they can feel woefully unsupported.
Fortunately, it’s never been easier to embark on a special-diet lifestyle. Follow these tried-and-true steps to be on your way to a happier and healthier gluten-free life.
Understand Your Disease
Make a point to learn all you can about your condition. Read recently published books written by acknowledged experts and turn to websites run by national celiac organizations, noted celiac research centers and trusted publications. The Internet offers a wealth of material but some of it is erroneous or, at minimum, conflicting. Be sure to verify data and make certain your sources are reliable. As you learn more about the disease and your new lifestyle, you can explore other resources with more confidence and better scrutinize the information being proffered.
Don’t Settle
Just because you are now eating gluten free doesn’t mean that you don’t have the right to enjoy delicious meals. Trust me. I’ve tasted more than my share of just plain awful gluten-free food. Don’t buy it. Don’t order it. Don’t make it. Once you know it’s possible that your food can be just as good as (if not better than!) wheat-based foods, you’ll become adamant about wanting only the best. If we all demand better, companies and restaurants will have to respond with delicious products.
Exhale
Relax. It’s going to be all right. Your diagnosis is a life sentence, not a death sentence. You’ve been handed the opportunity to largely control your health by what you choose to put into your body. Without a prescription, you can heal yourself simply by taking charge and changing a few of your foods. Now don’t you feel better already?
Get sample recipes on our recipe page.
It is possible for you to enjoy meals again with the Gluten Free Cookbook and recipes. Enjoy!
Celiac Disease and Diabetes
Wednesday February 10, 2010
often occur together, especially in people with type 1 diabetes (also known as juvenile diabetes). The estimated rate of celiac disease in people with juvenile diabetes ranges from 10 to 20. By comparison, the rate of celiac disease in the general U.S. population is about 1 percent.
Diabetes and celiac disease are both autoimmune disorders. Genetic links between the two diseases are becoming clearer, and many doctors now recommend that anyone who’s been diagnosed with type 1 diabetes should also have tests for celiac disease.
If you have celiac disease and a close relative has diabetes, it would be very worthwhile to tell the diabetic person’s doctor about the celiac connection in the family.
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New Research Shows Benefits of Gluten-Free Camps for Kids with Celiac Disease
Monday February 15, 2010
Children with celiac disease who attended a gluten-free camp benefited from improvements in well-being, emotional outlook, and self-perception, according to an article scheduled to appear in the March issue of the medical journal Pediatrics. (An advance copy of the report was published online today.) Based on their results, the authors of the report concluded, “A gluten-free camp that provides an environment of unrestricted foods can at least temporarily alleviate stress and anxiety around food and social interactions.”
Dr. Mel Heyman from the University of California, San Francisco, who oversaw the project, told me, “Many of the children, especially the teenagers, commented that this camp environment provided ‘the first time in their lives that they didn’t have to worry about the foods they were eating’ – and ‘It was great knowing that all of the food provided were safe to eat.’” And finally, Dr. Heyman added, many kids wished they didn’t have “to wait until next year to have that feeling again!”
Dr. Heyman and his colleagues distributed questionnaires to 104 children with celiac disease at the beginning and the end of a week-long session at a gluten-free camp in California (Celiac Camp at Camp Arroyo). Seventy-seven children completed both of the questionnaires.
The 77 campers who completed both surveys were between the ages of 7 and 17, and most of them were girls (only 21 were boys). Overall, 70% had been on a gluten-free diet for less than four years.
All of the children enjoyed the camp, “no longer feeling different from other kids or feeling frustrated with a restricted diet,” the researchers said in their paper. A press release from the American Academy of Pediatrics, which publishes the journal Pediatrics, points out that “those still learning to adapt to a life with a gluten-free diet benefited the most by no longer feeling embarrassed or singled out from other kids by having a restricted diet. In addition, participants were able to interact with others who had been on a gluten-free diet for a longer time, and were able to learn new coping mechanisms from them.”
Specifically, Dr. Heyman and his colleagues write, “The positive effects of camp were more apparent among campers who had been on a gluten-free diet for less than 4 years compared with those who had been on a gluten-free diet for 4 years or more,” which suggests, they say, that over time, children adapt to life on a gluten-free diet.
The researchers hope their findings will encourage children with celiac disease to attend these camps so they can improve their quality of life at home, at school, and during social interactions.
If you’d like more information on gluten-free summer camps, see my 2010 list of camps and dates.
Dr. Heyman mentioned to me that he is also involved in a camp for children with inflammatory bowel disease, so pass the word if you know anyone who could benefit from that!
Source:
Bongiovanni TRS, Clark AL, Garnett EA, et al. Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease. PEDIATRICS (doi:10.1542/peds.2009-1862) Published online February 15, 2010
Read about other recent advances in celiac disease research.
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Posted in Celiac | 
Tags: Benefits, Camps, Celiac, Disease, Gluten-Free, Research, Shows | 
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New York Times features Celiac Disease
liac in the News 12/16/2009
Times Health Guide publishes an article series devoted to celiac disease and the gluten-free diet.
The New York Times website published a series of articles on celiac disease in it’s Times Health Guide, which featured NFCA Scientific/Medical Advisory Board Member Dr. Ritu Verma, director of the Celiac Disease Center at Children’s Hospital of Pennsylvania.
Dr. Verma highlights NFCA’s efforts to increase the number of gluten-free menus in restaurants through its Appetite for Awareness and Gluten-Free Resource Education Training (GREAT) programs.
Also quoted by the NY Times was Dr. Charles Bongiorno, the chief of the division of gastroenterology and hepatology at the University of Medicine and Dentistry of New Jersey.
Both Dr. Verma and Dr. Bongiorno participated in NFCA’s recent Appetite for Awareness event, held September 30th 2009 at the Wachovia Center in Philadelphia.
NFCA would like to thank the author of today’s Times Heath Guide celiac disease series, Carolyn Marie Sayre.
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Enzyme and Immunotherapy May Someday Treat Celiac Disease
Celiac in the News 12/21/2009
LA Times article looks at research on the horizon.
While the only treatment for celiac disease remains a 100% gluten-free diet, researchers are in pursuit of alternative therapies, which may someday allow celiacs to ingest gluten without causing an autoimmune response and harming the body.
An LA Times December 21st article entitled, ‘New hope for celiac disease sufferers?’, provides a progress report on two major non- dietary treatment research initiatives currently underway, enzyme therapy and immunotherapy.
NFCA Scientific/Medical Advisory Board member, Dr. Robert Anderson, discusses efforts he is leading to develop a celiac vaccine.
From the LA Times:
“In Australia, a company founded by Anderson, called Nexpep, is packaging the gluten peptides that trigger this immune response into a vaccine that will desensitize the immune reaction. The theory, which he says works in animals, is that by introducing these peptides through injections under the skin rather than through the gut, the immune cells learn to tolerate them and no longer display them to the T cells. That can theoretically prevent or turn off the reaction that damages the intestines
Anderson expects Phase I safety trials of this vaccine, Nexvax2, to be completed in mid-2010. He anticipates that patients would receive a series of injections of the vaccine, followed by occasional maintenance doses.”
Dr. Anderson was the keynote speaker and honoree at NFCA’s May 2009 Washington DC Gluten-Free Cooking Spree.
NFCA Scientific/Medical Advisory Board member Dr. Peter Green, of Columbia University’s Celiac Disease Center, and Dr. Daniel Leffler, of the Celiac Center at Beth Israel Deaconess Medical Center in Boston were also quoted in the article.
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Celiac Disease in Columbia University Magazine
Celiac in the News 1/6/2010
An interview with renowned celiac expert Dr. Peter H.R Green.
The winter 2009-2010 issue of Columbia Magazine features NFCA Scientific Medical Advisory Board member Dr. Peter Green in an article entitled, Against the Grain.
Dr. Green sheds light on the lack of celiac disease awareness within the physician community and other barriers to diagnosis.
“If drug companies don’t think there’s money to be made treating celiac disease,” Green says, “doctors aren’t going to see many research papers about it, they’re not going to hear lectures about it at the big medical-education conferences sponsored by drug companies, and they’re certainly not going to have attractive ex-cheerleaders showing up at their office doors with samples of gluten-free food, asking them how many people they diagnosed with celiac this week.”
Green also admits the level of awareness, understanding and diagnosis among the international medical community is far greater than here in the United States.
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North Carolina Protects Celiac Community from Poisoned Bread
Celiac in the News 1/22/2010
Lawsuit Against Gluten-Free Bakery Backed By State Attorney General’s Office.
The North Carolina Attorney General’s office announced today that it is supporting a lawsuit filed against restraining order against the Paul Selig, owner of Great Specialty Products, which manufactures gluten-free breads.
Gluten-Free Raleigh writes:
“The state of North Carolina is enforcing Gluten Free product claims/labeling (via fraud) when the FDA won’t. It’s great to know that our state is actively protecting its citizenry, especially Celiacs who are often left fighting for themselves at every turn.”
A lawsuit was filed against Selig on Wednesday afternoon, following an N.C Department of Agriculture investigation of Great Specialty Products. Many local customers reported having been contaminated after eating Great Specialty Products bread.
The Attorney General’s office is asking the judge hearing the Seelig lawsuit to close the company. Yesterday’s hearing will enforce a temporary restraining order against the company preventing them from selling gluten-free labeled products for at least 10 days.
Two members of the gluten-free community, Rebecca Fernandez, of Raleigh, and Fred Lybrand, of Chapel Hill, home tested samples of seven Great Specialty Products breads and found them positive for the gluten protein, which prompted the N.C Department of Agriculture investigation. State agriculture officials sent samples from the same breads tested by Fernandez and Lybrand to a University of Nebraska lab, which determined that the breads tested did in fact contain gluten.
Whether the breads were made with wheat or exposed to the gluten protein through cross contamination could not be identified.
But according to NBC17:
Dan Ragan with the Department of Agriculture said after getting the bread tested, the levels of gluten were much too high to be simple contamination.
“Those results came back with 5,000 parts per million of gluten,” Ragan said.
Complete coverage of the lawsuit can be found on the News & Observer website.
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JAAPA recognizes crisis of undiagnosed celiac disease
Celiac in the News 1/29/2010
Medical journal supports increased awareness and testing
The Journal of the American Academy of Physicians Assistants (JAAPA) recently highlighted NFCA’s GREAT Healthcare education program for medical professionals.
In a letter to the editor authored by Loretta Jay, NFCA Director of Program Development, JAAPA supports NFCA’s efforts to drive diagnosis and raise awareness of the disease within the physician community through GREAT training.
“Because recognition of the symptoms must occur before practitioners consider the disease and pursue screening, more comprehensive information that supports detection is needed for health care providers to include celiac disease in their differential diagnosis.”
To read the entire letter, visit the JAAPA website.
Back in December 2009, an article published by JAAPA brought the issue of undiagnosed celiac disease to the fore; encouraging health practicioners to become more familiar with the many signs and symptoms of the disease so that they may better recognize the disease in their patients.
“Celiac disease is not uncommon in this country, yet it remains widely unrecognized. The diagnosis should be considered in patients who present with compatible symptoms, typical or atypical, and in those with other indications for screening.”
The article “Common signs and symptoms, and a diagnosis that is often overlooked” was written by Bettie Coplan, MPAS, PA-C.
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GREAT Healthcare — Program Aims to Improve Celiac Knowledge Among Professionals
Celiac in the News 2/9/2010
Article by Loretta Jay, NFCA Director of Program Development, featured in Today’s Dietitian, February 2010 Issue
Vol. 12 No. 2 P. 14
In 1995, newly diagnosed with celiac disease and motivated to educate others, Margaret Weiss Masiello left her lucrative career as a financial planner to go back to school to become a dietitian. One of her first jobs in the field was with the ALS Association Greater New York Chapter. The patients there were provided with physical therapy, occupational therapy, speech pathology, and mental health and nutritional counseling through weekly clinics.
The multidisciplinary approach of this clinic struck a chord with Masiello as it acknowledged the effects that ALS can have on many aspects of life, and it made sense to target treatment accordingly. Masiello continued this interest when she began working as the dietitian and clinical coordinator at the Kogan Celiac Center at the Saint Barnabas Health Care System in New Jersey.
At the helm of the center, Masiello soon realized that Saint Barnabas’ network of 18 hospitals and rehabilitation centers was in need of training on how to not only manage a gluten-free diet for patients with celiac disease but also recognize potentially undiagnosed or misdiagnosed patients. Masiello’s experience at the ALS clinic provided her with a multidisciplinary model she wanted to apply and further develop at Saint Barnabas.
The timing was opportune. The National Foundation for Celiac Awareness (NFCA) had recently completed a needs assessment about celiac disease training in hospitals and confirmed that the call for educational services was great. As a result, the NFCA was developing a first-of-its-kind, comprehensive continuing education program for healthcare providers called GREAT Healthcare (Gluten-free Resource Education and Awareness Training). It was a perfect fit, and Saint Barnabas, with Masiello in the lead, was identified as the pilot location.
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Tags: Among, Celiac, GREAT, Healthcare, Improve, Knowledge, Professionals, Program |
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