In addition to its great strides in awareness, education and advocacy, the Celiac Center has developed several programs that benefit the celiac population free of cost.  Some of these include the Celiac Disease Information Hotline, where one can call 5 days a week with questions regarding symptoms, testing and diagnosis.  You can call Monday through Friday, from 9 a.m. to 5 p.m. central standard time at (773) 702-7593.  Another program is the annual free celiac screening, which takes place in October, and provides free celiac blood screening for those at risk of developing celiac.  This is a hugely popular program and registration fills up quickly so it is important to sign-up as soon as registration open in September.  Experts and vendors are also on hand to answer questions.

One of the most fun programs the Celiac Center initiated is the free gluten-free care packages to those newly diagnosed with celiac disease.  This program began in 2001 and is available to anyone in the US, to you or a family member that has been diagnosed, by biopsy, within the last three months.  You may call the Center for your own bountiful care package.

I received my package earlier this year, and it was a welcome treasure to receive by mail.  It was a large basket full of gluten-free goodies wrapped just like a gift basket one would receive for the holidays, and it was all safe!!  Care packages include gluten-free food guides, support group information, coupons for gluten-free products and samples…many useful and yummy samples!!  Package contents may change from time to time depending on participating vendors.  A list of past and present vendors can be seen here.

Some of the items my package included were 2 packets of spicy Bhuja snacks (I think these were my favorite), Mary’s Gone Crackers, Erewhon cereal, Tinkyada pasta, Chébé bread mix, dip mix from Cali Fine Foods, a coupon for a free package of Bob’s Red Mill pizza dough mix, a copy of Living Without magazine and many more edibles.   I wanted to keep it all for myself, but my family enjoyed it all too.

Call the center for your free care package today!

You are reading Free Gluten-Free Care Packages for those Newly Diagnosed with Celiac Disease!. This post is the property of Celiac-Disease.com © 2009.

After speaking with some people that worked in the insurance industry, and some who used to, everyone agreed this letter might be the insurers attempt to drop my coverage because I had recently been diagnosed with celiac disease. We told the insurance company we didn’t have supplemental coverage and that was the end of it. Maybe we assumed wrong about the meaning of the letter but we’ll never know one way or another.    

One of the main issues here is that most insurance companies do not think most people with celiac disease are following the gluten-free diet faithfully. Studies show that up to 60% of patients who are told to go gluten-free continue to eat gluten, so the insurance companies assumptions are understandable. Many of them even mark the charts of celiac patients “pre-cancerous condition”. This is because untreated celiac can lead to several types of cancer, including but not limited to, non-Hodgkins lymphoma.         

Certianly I don’t know what the answer is regarding health care reform. Health insurance is not the same as health care anyway, but that point seems to be get lost in the discussion at times. It also seems that in this country, you might be better off not having a bonafide celiac diagnosis on your health record. Here is some evidence that this assumption might be correct.

Excerpt from the Chicago Tribune:

When 17-year-old Brianna Rice was diagnosed with celiac disease in February, she had health insurance.

She doesn’t now.

In the months that followed her diagnosis, her insurance company, American Community Mutual Insurance, combed through her medical records and ruled that her parents lied on her application last year.

In May, American Community not only canceled her policy, but also rescinded coverage all the way back to the day it started — Nov.

Please take time to read the entire article. At the very least, what is happening to this family is sad and unfortunate. Share your thoughts about the issue in the commments below.  

You are reading Why Some People Don’t Want an Official Celiac Diagnosis. This post is the property of Celiac-Disease.com © 2009.

My background is in the promotional products industry. For eighteen years I worked with corporate clients including, but not limited to:  Cingular Wireless, Arby’s, Intel, Toshiba, Cousins Properties, Hewlett-Packard, Xerox and John Wieland Homes. In Silicon Valley I worked with companies whose names you would not know unless you knew who made all the parts in your computer. It was a very rewarding career for many years and I was quite fortunate to stumble into the positions I landed in. I didn’t even know what the term Ad Specialty meant when I started selling them!

In 2006 when I was diagnosed with celiac disease, I was as overwhelmed as everyone else is – maybe more so since one of my hobbies back then was planning vacations every chance I got. We’re “dinks” to quote a terms used years ago – dual income no kids – for you youngsters out there. Shortly after my diagnosis we went to Europe and when we came home my husband started looking into getting transferred somewhere over there. Almost any place was easier to navigate gluten-free than the U.S. back then. The way I was treated over there regarding special meal requests compared to how I was treated here was like night and day – even in Paris!

Everyone in this country said Paris was absolutely unmanageable regarding gluten-free dining. Without question, at that time Paris was the worst place to go in Europe for gluten-free service. But it was ten times better than being here! I arrived home to feel more depressed about living gluten-free than I’d been before the trip. If not for our families objecting, we’d probably be living abroad right now. But if we’d moved, I would have been running away from a challenge and that’s something I’ve never done.

So, I rolled up my sleeves and joined forces with the thousands of gluten-free advocates out there – fighting the good fight and bringing change to this gluten-free world of ours. According to someone from the U.S. who has celiac disease and lives in Paris at present, it’s easier to live gluten-free here than there these days. Now that is what I call progress!

Do we have a long way to go? Yes. Is it easier to live gluten-free in Italy, Finland or Australia than the U.S.? Yes. But together we can continue to affect change here at home. We can’t wait for the government to do it for us. The FDA can’t even come up with a standard for gluten-free labeling law here and Canada has had one for 24 years. The NIH Celiac Disease Awareness Campaign is slow going to say the least. It’s up to all of us to do our part – large or small – to make it easier to enjoy living gluten-free here in the U.S.

It is my personal goal to look back one day and marvel at how easy it is to live gluten-free in this country compared to today. And things have already improved greatly in just the last three years. People aren’t risking their lives to come here from all corners of the globe for no reason. Anything really is possible here and that means that living rich, full and delicious gluten-free lives is well within our reach.

Thank you to all the gluten-free advocates out there who inspired me to start this crazy journey. Many of them don’t write blogs so you don’t know their names. They run support groups, organize fund raisers for celiac charities and donate their free time for various projects around the country. Those activists are the unsung heroes of the gluten-free movement and we owe them all a debt of incredible gratitude!

Has someone inspired you to get involved in the gluten-free  community? If so, tell us about them in the comments below!

You are reading How a Celiac Diagnosis Changed my Life for the Better!. This post is the property of Celiac-Disease.com © 2009.

For your reference, here is the top 5 in order: 1) Peanuts, 2) Dairy/Beef/Lactose, 3) Shellfish, 4) Wheat Allergy/Gluten Intolerance (Celiac Disease), 5) Eggs.   Here is an excerpt from their post regarding Celiac Disease:

An increasing number of Americans are being diagnosed with wheat and gluten intolerance, due to increased awareness programs surrounding Celiac disease. A wheat allergy deals specifically with the wheat grain, while Celiac disease is brought about by an autoimmune disorder which affects the body’s ability to process gluten proteins within grain (wheat as well as others).

Those diagnosed with wheat allergies have about a 20 percent chance of being allergic to other grains. With Celiac disease, you must also avoid barley, rye and oats. There is the possibility of outgrowing a wheat allergy, however those suffering from Celiac disease will have a lifelong issue with gluten and wheat products. Celiac disease can lead to severe malnutrition if not properly diagnosed and because it will require a lifestyle change, make sure that you seek out a proper diagnosis from trained medical personnel, such as an allergist, rheumatologist, or gastroenterologist.

As with other common allergens, the government has mandated packaged food be properly labeled as containing wheat (although not gluten). Be particularly careful about baked goods, bread crumbs, cereals, and grains like semolina, couscous, and farina. You may also find wheat, in various incarnations, in beer, breaded food, sausage, sauces, and even ice cream, salad dressings and soups. General food guidelines for wheat allergy can be found here at the Lucille Packard Stanford Children’s Hospital website.

I suppose this should help raise awareness for Celiac Disease and I wouldn’t be surprised as Celiac diagnosis continue to go up if Celiac Disease moves up the list.

You are reading Celiac Disease Named in Top 5 Food Allergies, Sensitivities, and Intolerances. This post is the property of Celiac-Disease.com © 2009.

A minority of patients with recurrent mouth sores (aphthous stomatitis) have gluten-sensitive enteropathy, making evaluation for celiac disease appropriate in this population, according to a new study in BMC Gastroenterology.

Gluten-sensitive enteropathy, or celiac disease, is an inherited, autoimmune disorder in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats.

“It has been reported that in 5 percent of celiac disease patients, aphthous stomatitis may be the sole manifestation of the disease,” write Dr. Farhad Shahram, of Tehran University of Medical Sciences, Iran, and colleagues.

Aphthous stomatitis is a painful open ulcer, such as a canker sore, in the mouth that is white or yellow and surrounded by a bright red area. They tend to reappear in times of stress and are associated with viral infections, food allergies and other conditions.

The researchers studied 247 aphthous stomatitis patients (average age 33 years) who had at least three aphthous attacks during the year. The team measured antibodies and other immune factors associated with celiac disease, and patients with negative results were excluded.

Those with positive results underwent biopsies of the lining of the small intestine. Gluten-sensitive enteropathy was defined as a positive blood test for immune factors and abnormal biopsy results. A gluten-free diet was recommended for patients with gluten-sensitive enteropathy.

Of the 247 patients, seven patients with positive blood tests underwent upper GI endoscopy and duodenal biopsies. Endoscopic findings were compatible with gluten-sensitive enteropathy in two patients and were normal in five patients. However, biopsy findings were compatible with gluten-sensitive enteropathy in all seven patients.

The patients with gluten-sensitive enteropathy were an average of 27 years old and the average duration of the disease was 4.5 years. The seven celiac disease patients had not responded to conventional mouth ulcer medications, including topical corticosteroids, tetracycline, and colchicine.

Of the seven celiac disease patients, four started a strict gluten-free diet. All showed a significant improvement within 2 to 6 months.

“Gluten-sensitive enteropathy should be considered in aphthous stomatitis patients,” the authors conclude. A lack of response to conventional treatment for could be another indicator of celiac disease risk.

You are reading Recurrent Mouth Ulcers Could Suggest Celiac Disease. This post is the property of Celiac-Disease.com © 2009.

Prometheus Laboratories Inc., a specialty pharmaceutical and diagnostic company, yesterday announced the launch of MyCeliacID, the first do it yourself, saliva-based genetic test dedicated to celiac disease. MyCeliacID identifies distinct genetic sequences associated with celiac disease, a largely undiagnosed genetic disorder that affects approximately 3 million people in the United States. MyCeliacID is the saliva-based version of a blood test used by doctors. The test can be ordered online at MyCeliacID.

“Prometheus is a leader in celiac genetic testing, performing more than 80,000 blood-based genetic tests for celiac disease to date,” said Ron Rocca, Prometheus’ General Manager, Gastrointestinal Products. “An estimated 1% of people in the United States live with celiac disease however many remain undiagnosed. We have decided to make MyCeliacID, a highly-reliable, non-invasive, DNA-based test for celiac disease, available directly to the public so that people who are searching for answers can have better information about their condition.”

Celiac Disease appears in individuals genetically predisposed to the disease and who consume gluten, a protein found in grains such as wheat, barley and rye. MyCeliacID is the only test that provides individuals with their risk of developing the disease relative to the general population. In addition, MyCeliacID can virtually rule out celiac disease in a person’s lifetime. A negative test result indicates that the individual does not have the genes associated with celiac disease and is highly unlikely to develop the disease. A positive result indicates that the individual has one or more genes that predispose to celiac disease, however it is not an indication of the disease itself. Individuals with a positive test result should see a physician, who may elect to perform other testing. Only a doctor can diagnose celiac disease.

“When my son Tyler was diagnosed in 1991, genetic testing for celiac disease wasn’t available,” said Danna Korn, founder of Raising Our Celiac Kids (ROCK) and author of four best-selling books, including Living Gluten-Free for Dummies. “It took two frustrating years of searching for answers and for the cause of my son’s symptoms. Today, with MyCeliacID, you can quickly find out if you or a loved one has the genes for celiac disease.”

MyCeliacID is available online. A licensed physician will review and place the order in accordance with state and federal law after a test request is made online. In addition, after the testing is performed, the physician will review and release the result. Test results can be accessed online via a secure link, usually within 7 days from receipt of the saliva sample.

About Prometheus

Prometheus Laboratories Inc. is a specialty pharmaceutical and diagnostic company committed to developing and commercializing novel pharmaceutical and diagnostic products to help physicians individualize patient care. Prometheus is a leader in applying the principles of personalized medicine to the diagnosis and treatment of gastrointestinal diseases and intends to apply these principles to oncology. Its strategy includes the marketing and delivery of pharmaceutical products complemented by proprietary, high-value diagnostic testing services. By integrating pharmaceutical products and diagnostic testing services, Prometheus believes it can address the full continuum of care, thereby providing physicians with a comprehensive solution to treat chronic diseases. Prometheus’ corporate offices are located in San Diego.

You are reading Prometheus Releases MyCeliacID, a Saliva-based Celiac Disease Genetic Test. This post is the property of Celiac-Disease.com © 2009.

Recently, a study of 128 patients on a gluten free diet revealed that changes in the permanent teeth may be the only sign of what can be for some people a symptomless Celiac Disease. It should also be noted that calcium and vitamin D deficiencies are common in Celiac Disease. Deficiencies of these nutrients lead to cavities.

“Dentists mostly say it’s from fluoride, that the mother took tetracycline, or that there was an illness early on,” said Peter H.R. Green, M.D., director of the Celiac Disease Center at Columbia University. “Celiac disease isn’t on the radar screen of dentists in this country. Dentists should be made aware of these manifestations to help them identify people and get them to see their doctors so they can exclude celiac disease.”

Green completed a U.S. study with his dental colleague, Ted Malahias, DDS, that demonstrates Celiac Disease is highly associated with dental enamel defects in childhood—most likely due to the onset of Celiac Disease during enamel formation. The U.S. study, which did not identify a similar association in adults, concluded that all physician education about Celiac Disease should include information about the significance of dental enamel defects.

It is critical that children are identified early. Dental enamel defects will have occurred before the critical age of 7 years, when the crowns of permanent teeth have developed. Defects can also be used as a screening tool in the adult population. Those with defects should be checked for Celiac Disease to avoid other health complications, such as irritable bowel disease, weight gain, osteoporosis or cancer.

If you know someone who cannot determine the cause of their dental enamel defects, tell them to ask their physician to consider Celiac Disease.

[Information Collected via Recognizing Celiac Disease]

Edit: Triumph Dining also has published some information on this subject, which you can read here.

You are reading Celiac Disease and Your Dentist. This post is the property of Celiac-Disease.com © 2009.

Our friend Nancy Lapid of About’s Celiac Disease page recently did some research and explains what groups have higher risks for Celiac Disease, based upon information taken from the American Gastroenterological Association (AGA) and the American College of Gastroenterology.

Included on the list are the following groups of people:

• Relatives of people with celiac disease
• People with iron deficiency anemia
• People with premature osteoporosis and osteopenia
• People with type 1 diabetes mellitus
• People with autoimmune thyroid disease
• Women with reproductive disorders
• People with irritable bowel syndrome (IBS)

Click here to check out the rest of the list.

Know of anyone who fits into several of these groups?   Pass along a suggestion that they get tested!

You are reading Who is Most at Risk for Celiac Disease?. This post is the property of Celiac-Disease.com © 2009.

Here are the 10 points he makes:

1. Your health is better!
2. You helped improve the health of other people by telling family members, friends, coworkers, and doctors about the importance of testing for celiac disease.
3. You don’t need medicine or surgery to treat your disease.
4. You don’t have to share your food. This is from the video of Dominick Cura’s fourth grade presentation.
5. You save money by not impulsively buying sweets, by not impulsively eating out, and by not buying your lunch daily.
6. Since you read labels, you have a better idea of the nutritional facts and ingredients of the foods you eat and can make more informed choices.
7. You appreciate the small things in life and find joy in them like new good gluten free foods, the mention of gluten free or celiac on a television show, gluten free lists of foods and medicines, and an informative blog post or review. (Yes, these are big things to celiacs, but they are still small things in the big picture of life.)
8. You eat healthier at home when you don’t feel like driving far to eat out or buy gluten free convenience foods.
9. You have something to blog about.
10. You participate in amazing internet networking with other celiacs and have an instant bond with them.

You can check out the entire article and the comments with other Celiacs input on this subject here.

You are reading The Benefits of Having Celiac Disease. This post is the property of Celiac-Disease.com © 2009.

If you are wondering what exactly this test is good for, here is some additional information provided by Celiac.com:

The test tells users with a high degree of accuracy that they are either negative, developing celiac disease, or already have celiac disease. In the last two cases, the specially formulated Canadian kit encourages people to consult a physician for confirmation, which usually involves a biopsy of the small bowel.

I have mixed feelings about this test, as I feel that peope who “self-diagnose” using an at home test may run into problems, as they won’t have a doctor’s guideance.   Hopefully people don’t use this test to diagnose, but instead use it to determine if they need an endoscopy and a dietician, etc.

What do you think?

You are reading Celiac Disease Home Test Now Available in Canada. This post is the property of Celiac-Disease.com © 2009.