Every kid has strong feelings about the end of summer and going back to school. Some love seeing teachers and friends and can’t wait to roll up their sleeves and attack the course work, while others feel – shall we say – just a little different about the whole experience. Needless to say, if you’re the parent of a child with special dietary needs associated with celiac disease, you too might be feeling a little excited or stressed about sending your child back to school.

Thanks to the growing influence of the Web, more information than ever is now available to help parents understand their child’s rights when it comes to schools making accommodations for students with food allergies and intolerances.

To begin with, it’s important to know that according to the U.S. government, public schools are not necessarily required to make an accommodation for children with celiac disease, and if a school does choose to make accommodation, the gluten-free substitution does not need to be identical to that of the non-gluten-free option.

Taking a step backward for a moment, in 1973, the United States Congress passed Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination on the basis of physical or mental disability and states:

No otherwise qualified individual with handicaps … shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…

To be protected under Section 504, a child must have a disability that is defined as a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; and, is regarded as having such an impairment.

Sadly, celiac disease by itself does not qualify a student for special accommodations, even under the Rehabilitation Act of 1973.

In 1990, Congress passed the Americans with Disability act. Title II of the Act requires equal availability and accessibility in state and local government programs and services, including public schools. The U.S. Dept. of Agriculture oversees school lunch programs and requires public school systems to provide substitutions for “qualified disabled students” whose disability restricts their diet, but since many school systems are set up to follow the qualifications associated with Section 504 of the Rehabilitation Act, celiac disease — because it isn’t defined as a physical or mental impairment that substantially limits one or more major life activities — rarely qualifies for special accommodations.

It seems for now at least, parents of children with celiac disease must be extremely strong and vocal advocates for their kids. To learn more about what you can do to help your child and their school navigate the myriad of issues associated with celiac disease and back to school, visit the Celiac Sprue Association’s Getting Along at School web page.

Curious to see if you have the genes associated with celiac disease? Now you can without ever leaving your home! Prometheus Laboratories, a San Diego-based pharmaceutical company, recently received Food and Drug Administration (FDA) approval for MyCeliacID, the first do-it-yourself, at-home, saliva-based genetic test dedicated to celiac disease.

Approximately 1 in 100 Americans have celiac disease. Some have common symptoms, such as bloating, diarrhea, and general gastrointestinal distress, while others have symptoms like anemia, infertility, weight loss, or osteoporosis. It is estimated by the celiac community that 60% of children and 41% of adults newly diagnosed with celiac disease had no symptoms at all.

From Tiffany Janes of Atlanta Gluten-Free Food Examiner:

Most people with celiac know that the tests for these conditions are lacking greatly in terms of accuracy. False negatives on the blood panel alone have been quoted in the 20% range. Obviously, if someone tests negatively on the blood test, their doctor isn’t likely to schedule a endoscopy looking for further indications of celiac disease.

Even when people have the endoscopy is performed, many doctors take only one or two biopsy samples. Dr. Cynthia Rudert of Atlanta explains that the proper way to do that test, is to take at least six samples since the small intestine is so ling. Taking only two samples might not catch the damaged villi. This might result in a false negative or inconclusive results.

Many in the medical community who are “in the know” about celiac, prefer to use the California based lab Prometheus Labs for their patients celiac blood tests, among other things. To quote one doctor “generic lab techs don’t know how to read a celiac panel. That is why so many people with celiac are testing negative for it”. If you have a celiac blood panel run and can get your doctor to use Prometheus to interpret it, you should do so.

MyCeliacID uses a recently approved saliva-based version of the blood test used by doctors — it is said to identify distinct genetic sequences associated with celiac disease, and is touted as the only test that provides you with a measurement of risk of developing the disease relative to the general population.

MyCeliacID is available online. According to the company website, a licensed physician will review and place the order in accordance with state and federal law after a test request is made online. Then, after testing is performed, the physician will review and release the result (accessed online via a secure link, usually within 7 days from receipt of the saliva sample).

Learn more at MyCeliacID.com.

Thanks to an astute customer, I recently learned Celiac Awareness Month is celebrated in October and May. Who knew!

As I shared in this post, for the last 21 years, the Celiac Sprue Association has designated October as “Celiac Disease Awareness Month.” What I didn’t know when I wrote and posted that blog entry is that a lot of other organizations, including the American Celiac Disease Alliance (ACDA)—a group comprised of college and university researchers, nonprofit foundations, pharmaceutical companies, food manufacturers, and celiac support groups—have, for the last half-dozen years or so, celebrated “National Celiac Disease Awareness Month” in May.

Digging a little deeper, I learned May is also National Digestive Disease Awareness Month, so it seems fitting many celiac-focused organizations are interested in acknowledging the fifth month of the year in the Gregorian Calendar as “National Celiac Disease Awareness Month.”

Personally, I think the estimated 1 in 130 Americans who suffer from wheat and gluten intolerance are lucky so many organizations care enough about Celiac Disease that they actually disagree over when its official “awareness” month should be observed.

For PureFit, the confusion simply means we have two designated and widely recognized opportunities to raise awareness about solutions to managing this awful disease (that is, until Congress gets off its lazy you-know-what and does something about H. CON. RES. 70: a Congressional resolution introduced by U.S. Congresswoman Nita Lowey of New York’s 18th Congressional District, calling for Congressional support and acknowledgement of the goals and ideals of National Celiac Awareness Month in May only).

Many of you reading our blog know that PureFit bars are among the best-selling wheat- and gluten-free sports nutrition bars on the market (oh, and they’re dairy-free also). The reason we decided to make a crap-free bar was due to the simple fact that 3,000,000 Americans (and many millions more if you look to Canada and across the pond to the rest of the world) have a difficult time digesting wheat or gluten, ingredients commonly found in other nutrition bars.

With an estimated one in 130 people in the United States having celiac disease — most of whom are undiagnosed — it was clear to me that something needed to be done to provide a healthy alternative in the nutrition bar category. (If you are unfamiliar with celiac disease, please read my February 25, 2008 blog post “What is Celiac Disease?”) Eight years later and we’re still going strong, as are organizations like the Celiac Sprue Association — a nonprofit  dedicated to helping people with celiac disease and dermatitis herpetiformis through world-class education, research and support — and the Celiac Disease Foundation — a Studio City, California-based organization that strives to provide support, information and assistance for people affected by celiac disease and dermatitis herpetiformis (CD/DH).

You may not have noticed but October is “Celiac Awareness Month.” If you feel you might have celiac disease or simply do not do well on foods that contain wheat and gluten, everyone here at PureFit strongly suggests that you see your doctor and get tested.

If your doctor suspects you have Celiac Disease, they will probably order a simple celiac blood panel for gluten antibodies. If the results of the blood test show you or a loved one have a high level of antibodies to gluten and to certain other proteins in the intestinal lining — a sign that you could have celiac disease — your doctor may talk to you about conducting a small bowl biopsy to confirm the diagnosis (trust me, that sounds a lot worse than it really is).

In any event, get tested and be sure to tell your friends and loved ones that there’s no time like to present to start feeling better! October is Celiac Awareness Month… spread the word!

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Note: Celiac Disease is sometimes spelled “Coeliac Disease”

Another Note: If you’re wondering about the “g” symbol that appears at the top of this post, it comes from Trader Joe’s and is their way of displaying products in which no ingredients or sub-ingredients contain gluten.

PureFit nutrition bars are all about what they do not contain in terms of potentially harmful ingredients or ingredients which may interfere with the bar’s ultimate nutritional value. For example, PureFit nutrition bars don’t contain any dairy, artificial sweeteners, hydrogenated oils, trans fats, or sugar alcohols. They also don’t contain gluten.

The fact that PureFit bars are gluten-free is important to many people but especially to those who suffer from Celiac Disease. Celiac Disease (also called celiac sprue, nontropical sprue, gluten-sensitive enteropathy, or, simply, CD) is a genetic, autoimmune, intestinal disorder triggered by gluten. It affects, on average, 1 out of every 133 people, and yet 97 percent of people who have Celiac Disease don’t even know they have it. As many as three million Americans are believed to have Celiac Disease, and, if left untreated, these people run the risk of additional complications including, but not limited to, osteoporosis, cancer and autoimmune diseases.

For somebody who has Celiac Disease, exposure to gluten (wheat products) damages the villi of his or her small intestine making it difficult for him or her to absorb essential nutrients from food. Currently, the only effective treatment for celiac disease is a gluten-free diet.

PureFit has long been committed to making a product that is gluten-free, but we also feel it is vitally important to educate people about Celiac Disease. This is a topic to which we will continue to return over the coming months, and it is one that is core to the PureFit philosophy. In the meantime, for additional information on Celiac Disease, check out the following resources:

National Foundation for Celiac Awareness (NFCA)

Celiac Disease Foundation (CDF)

Celiac Sprue Association (CSA)

PureFit is a proud supporter of the Celiac Sprue Association (CSA).