The symptoms of celiac disease cover a wide range and are variable from person to person, but according to the Canadian Celiac Association, there are some symptoms that seem to be particularly common among celiac children.

These are: vomiting, irritability, behavioral changes, delayed growth or puberty, short stature, and dental enamel abnormalities.

According to Celiacs, Inc., the symptoms of celiac disease usually manifest in children after three to five months after they first ingest gluten, but this period of time may be shorter (“as short as one month”).  Their website lists additional celiac symptoms commonly found in children, such as a large abdomen, abnormal stools (large, pale, or floating), flattened buttocks, and acute diarrhea and dehydration.  Older children will experience “more subtle” symptoms such as: poor appetite, poor growth, and anemia.

Tina Turbin
http://www.GlutenFreeHelp.info
b.a.

Celaic disease, which has a wide variety of symptoms in itself, often is attended by other health conditions. According to the Canadian Celiac Association, for this reason, it’s recommended that people with celiac disease symptoms or a family history of celiac disease get tested for the following associated conditions:

-Osteoporosis
-Type 1 diabetes mellitus
-Other autoimmune disease (such as autoimmune hepatitis or autoimmune thyroid disease)
-Down syndrome
-Turner syndrome
-Lymphoma

Tina Turbin
http://www.GlutenFreeHelp.info

b.a.

Fulfilling the requirements of both the Canadian and U.S. government standards for gluten-free (http://glutenfreehelp.info) facility certification is no easy task. Ask Beth Armour of Cream Hill Estates, Canada.

Cream Hill Estates routinely undergoes painstaking and expensive tests to eliminate any and all possibilities of cross-contamination. The complicated and demanding process begins with the transportation of the select seed and crop of specific farmers via “proper” vehicles to the gluten-free facility.

The cost of the select seed is high. It is 99% pure, with only one non-oat seed per 25,000 seeds of oats. The fields must be proven gluten-free for three years with additional standards met such as distance to other lands and ditches. Inspectors visit regularly.

“Cream Hill Estates uses only equipment dedicated to further the process by high pressure air and industrial vacuum to eliminate any possibility cross-contamination,” Beth says. “Their trucks and storage bins are handled the same way.”

Cream Hill Estates tests their products at various stages in the lengthy and expensive process, and they are also tested at a laboratory certified by the Canadian government.
The Canadian Celiac Association (CCA) has established a specific standard for growth, harvesting, and processing oats in Canada of 20 parts per million (ppm). Beth Armour says her oat flakes test under 5ppm. http://www.creamhillestates.com/

Adding gluten-free oats to a celiac person’s diet (http://glutenfreehelp.info/celiac-or-gluten-sensitive) is another test. It can be tolerated successfully with a gradual approach in recommended dosages. The additional fiber and health benefits will be a welcome addition to the celiac patient’s diet. It’s recommend that a quarter of a cup of dry rolled oats be the maximum for adult consumption.

Dr. Peter Green, MD, the head of the Celiac Disease Research Center at Columbia University (http://glutenfreehelp.info/gluten-free-info), recommends annual blood tests as well as “appropriate timed” biopsies for celiac patients who decide to add oats to their diet. Dr. Green supports the attempt to add oats to the gluten-free diet for additional fiber and increased variety.

Watch the video review I did on these Cream Hill Estates products here or below.

Tina Turbin
www.glutenfreehelp.info

Because even the tiniest amount of gluten can make celiacs ill, reading labels in selecting gluten-free foods is one of the necessary skills celiac patients should acquire right at the start of their gluten-free diet. However, it isn’t enough for celiacs to look for a “gluten-free” label to stay safe in the U.S. Although proposals for gluten-free labeling laws are in the works, currently there is no official definition in this country for “gluten-free.”

According to Living Without, neither of the two major food government agencies, the U.S. Department of Agriculture, which regulates egg, meat, and poultry products, nor the FDA, which oversees packaged and other foods, have a specific definition for “gluten free.” As it stands, the FDA’s standard for gluten-free labeling is that the label be “truthful and not misleading.” This means that if a food is supposed to be “free” of an ingredient, it shouldn’t have that ingredient in it.

Unfortunately, this standard isn’t workable when it comes to gluten-free products. Whereas other products which claim to be “free” of substances such as caffeine or sodium can be confirmed with testing to indeed have zero of these substances, Living Without reports that the technology for testing for zero gluten isn’t yet developed, according to attorney Andrea Levario, who is the executive director o the American celiac Disease Alliance (ACDA).

As it stands, gluten is tested in parts per million (ppm) and the smallest detectable amount is presently 20 ppm. According to Living Without, celiac experts are in agreement that this is a safe amount for celiacs to ingest. However, other countries define “gluten-free” as having below 20 ppm.

According to AmericanCeliac.org, the Food Allergen Labeling and Consumer Protection Act 0f 2004 (FALCPA) has required the FDA to formulate voluntary gluten-free labeling laws. The website provides a series of questions and answers from the FDA regarding the current proposals, which were developed in 2006. These current proposals require that the gluten content be less than 20 ppm and that the product itself can’t have 20 ppm or more of gluten, due to the limitations in the current analytic technology.

According to Living Without, “With the number of products making unregulated gluten-free claims on the rise, the marketplace can be potentially dangerous for consumers with gluten sensitivity and wheat allergy.” Recognizing this fact, the American Celiac Disease Alliance is clarifying the proposed gluten-free labeling regulations on its website, www.AmericanCeliac.org.

Before this labeling regulation can be put into effect, according to Celiac.com, the FDA needs to make another draft of the proposal public, gather and consider the commentary generated from the new draft, and then publish a notice regarding the safety assessment. “The FDA will likely publish the notice on the safety assessment soon,” Celiac.com reports, but there is no indication as to just when they will issue the final rule. With “gluten-free” labeling on the rise, it seems more crucial than ever to get these regulations passed with a clear definition for “gluten free.”

Tina Turbin

www.GlutenFreeHelp.Info

k.m.

Resources:

American Celiac Disease Alliance: Gluten-Free Labeling Proposed Rule http://americanceliac.org/food-industry/gf-labeling/

Celiac.com: FDA Set to Adopt New Gluten-Free Labeling Standards In-Line with New Codex Alimentarius Standards http://www.celiac.com/articles/21617/1/-FDA-Set-to-Adopt-New-Gluten-Free-Labeling-Standards-In-Line-with-New-Codex-Alimentarius-Standards/Page1.html

Diet.com: Contamination of Naturally Gluten-Free Grains   http://new.diet.com/blogs/read/contamination-of-naturally-glutenfree-grains/19524

“GF Product CLAIMS: Can You Trust Them?” Living Without: April/May 2010.

I’m sure you’ve heard the great news: the Food and Drug Administration (FDA) has finally published its proposal for gluten-free labeling requirements and is accepting comments from consumers through October 3, 2011.

Now that the proposal has been published, it’s time for the celiac community to take the critical step of providing feedback to the FDA. In order to assist gluten-free consumers with this task, the Celiac Disease Foundation and American Celiac Disease Alliance, with the help of notable experts, have set up an informative website (www.1in133.org) with resources on the proposed guidelines and even a Gluten-Free Labeling Proposal Letter to which consumers can add their signature.

According to the Celiac Disease Foundation, “Many individuals want to comment on the proposal but may not be sure of what to write or how to frame their comments or perhaps find it complicated to navigate through the process.”

The Frequently Asked Questions page is informative and easy to understand, and the proposed letter is cogent and well-analyzed. Check it out and let your voice be heard!

http://1in133.org/proposal

Tina Turbin

www.GlutenFreeHelp.info

In my work as an author, researcher, and gluten-free advocate, I work hard to help the gluten-sensitive and celiac communities live a healthy, balanced lifestyle, free from the threat of gluten ingestion. Over the past several years, I am grateful to have witnessed a marked increase in gluten-free awareness and celiac disease research, with many benefits for gluten-free consumers, such as gluten labeling laws, more companies devoted to manufacturing gluten-free alternatives, and helpful online resources. Nevertheless, there is one arena that needs to be addressed—gluten labeling requirements of  medications. As it stands, the FDA hasn’t implemented any such requirements, putting celiac patients at risk.

It’s estimated that three million Americans have celiac disease, an autoimmune reaction to gluten, a protein found in wheat, barley, and rye. Genetic in origin, the disease works by attacking the absorptive fingers which line the small intestines, called villi, damaging them so that vital nutrients can’t be absorbed. What results is a wide variety of painful physical and mental symptoms, such as chronic diarrhea, chronic exhaustion, stomach problems, and migraines. Even though prescription and over-the-counter drugs can contain this ingredient that can make 1 in 100 Americans seriously ill, no clear gluten labeling laws exist, a fact which NFCA (the National Foundation for Celiac Awareness) is working hard to remedy.

The FDA has already launched a Safe Use Initiative, in which the FDA “seeks to partner and collaborate with relevant stakeholders to measurably reduce preventable harm from medications, thereby improving patient health,” according to the FDA’s website. Alice Best, Founder and President of NFCA, and Loretta Jay, M.A., the Director of Program Development, have teamed together to get the FDA to expand the initiative’s scope on behalf of the celiac community. “The Safe Use Initiative’s emphasis on informational errors makes this project particularly important to people with celiac disease and gluten sensitivity,” they wrote to the FDA.

According to Best and Jay, without labeling requirements for medications, “although few medications do contain gluten, every medication must be investigated to verify its gluten-free status.” The current situation requires that pharmacists and patients contact the pharmaceutical manufacturers themselves to inquire about gluten content. “Answers are not available after regular business hours, and sometimes manufacturers are not prepared with the responses when contacted during the day,” Best and Jay write. Furthermore, this information can change easily as pharmaceuticals are manufactured differently. Whereas time-consuming research can be inconvenient for celiac patients when it comes to food products, it can be a health-threatening matter when dealing with medication.

Clearly, this lack of gluten labeling requirements can put celiac patients at risk and result in what Best and Jay call “the almost certain potential for error and consequent grave harm to the celiac and gluten sensitive patient population.” Thankfully, we have the NFCA working on our behalf. In the meantime, celiac patients and pharmacists will have to continue their diligent research on their own. “It will be a long road,” Jay says, but with perseverance I think we can look forward to future gluten labeling on our medications.

Tina Turbin

www.GlutenFreeHelp.info

k.m.

Resources:

FDA: FDA’s Safe Use Initiative http://www.fda.gov/downloads/Drugs/DrugSafety/UCM188961.pdf

Regulations.gov: National Foundation for Celiac Awareness (NFCA)  http://www.regulations.gov/search/Regs/home.html#documentDetail?R=0900006480b0e253

Dr. Thomas O’Bryan is a leading researcher, writer and internationally recognized speaker and work shop leader specializing in Gluten Sensitivity & Celiac Disease. He is the Sherlock Holmes for chronic disease and metabolic disorders. Read my interview with him below:

What was your purpose in becoming a doctor?

My passion and purpose is to Help Heal the World, One Patient at a Time.

Tell me about the goal of your website Dr.com.

TheDr.com is a source of education for the general public as well as healthcare professionals with a major focus on the effects of Gluten Sensitivity and Celiac Disease and its many manifestations.

With such an abundance of health and wellness products on the market, how could it be possible that our youth are predicted to live a shorter life span than their parents?

That’s a very good question and cause of great alarm to Researchers. The consensus at this point appears to be that it is the exponential  increase in environmental toxins (including foods) that has overwhelmed our bodies altering metabolic function to every tissue. For example, our bodies were not designed to ingest or digest the modified form of gluten found in our foods today. With all due respect to those who argue bread has been the Staff of Life for thousands of years, my response is ‘no one on the planet is eating the bread that Jesus Christ ate’.  Our food industry is a competitive ground of over – everything. – Supersize, oversize, big portions, overweight, lack of exercise.   Here are just two studies that suggest our bodies, and our brains are affected by our foods:

• Emerging findings suggest that dietary factors play major roles in determining whether the brain ages successfully or experiences a Neurodegenerative disease,

National Institute on Aging, Annals of Internal Medicine,Vol.139,no.5 2003, 441-444

• All Celiac children clinically diagnosed with ADHD or their parents report a significant improvement in their behavior and functioning after 6 months on a gluten-free diet

Journal of Attention Disorders, March 2006, 1-5

What type of programs(s) do you offer to individuals who are interested in losing weight and/or improving health?

TheDr.com is primarily a resource for GS and CD.  TheDr.com does offer a homeopathic metabolic reset program called Slim & Fit.  This 42 day program is nutrient dense,  promotes the body to burn fat, not muscle and resets the metabolic system while burning stored fats in the body.

It is common in the medical industry for symptoms to be diagnosed and as a result, medication is dispensed.  Is this your method of operation or are you interested in revealing the underlying cause?  Please explain.

Our Rule of Thumb is ‘if you need pharmaceuticals, make sure to take them EXACTLY as your doctor prescribed. AND, let’s find out what the underlying imbalances are, correct the imbalances (if possible), and then go back to your prescribing doctor and ask them to monitor you as they wean you down on the medications. This is the essence of Functional Medicine-take what your body needs as long as your body needs it. This includes medications and neutraceuticals (vitamins, minerals and antioxidants).

I see that you take an interest in the topic of gluten-free, why is that?  Do you have Celiac?

According to the New England Journal of Medicine, Celiac Disease is one of the most common lifelong disorders in both Europe and the US.  (NEJM 348;25 June 19,2003)   It can be the root, the trigger in over 55 Auto-Immune Diseases.  Gluten Sensitivity can affect any area of the body.   I do have a Gluten Sensitivity.

Your credentials and your level of skill and training are very impressive, especially in regards to celiac disease.  Do you regularly research and write about this topic?  If so, please share some of the publications/websites which you have written for.

Yes, my time is spent researching, writing and educating on the topic of gluten sensitivity and celiac disease.

• Intestinal Problems and ‘Whole-Body’ Symptoms, Gut 101-the Effect of Foods’, The Autism File Global magazine (Issue 37, October 2010)
• Reproductive Disorders in Celiac Disease, Journal of Practical Gastroenterology (October, 2009)
• The Immunology of Immediate and Delayed Hypersensitivity to Gluten, European Journal of Inflammation (Vol. 6 no. 2; 1-9, 2008)
• The Immunology of Gluten Sensitivity Beyond the Intestinal Tract, European Journal of Inflammation (Vol. 6 no. 3; 1-8, 2008)
• Immune Responses to Dietary Proteins, Gliadin and Cerebellar Peptides in Children with Autism, Nutritional Neurosciences (Vol. 7, no. 3, 151-161, 2004)
• Bone Up to Speed Healing of Fractures, Alternative Cures: The Most Effective Natural Remedies for 160 Health Problems (274-277, ISBN #1-57954-058-9)

And numerous others.

Please shed some light for our readers, what exactly is a gluten coach?

We receive calls and emails from people that have seen dozens and dozens of doctors who have no idea what gluten can cause or how to treat sensitivity to gluten or celiac disease.  Many people come to us at TheDr.com and ask for a healthcare practitioner in their area that knows something about the topic.  There are thousands of practitioners that have been in my education sessions over the years.  Although we do not endorse these Practitioners, we give them an opportunity to be listed at no charge on our site as a Practitioner who has been in my all-day gluten education seminar.  These Practitioners should have ‘The Big Picture’.

I’m aware of the fact that you regularly create videos and speak on radio shows in which you educate others on a variety of health issues.  What are some of the issues that you discuss?  Can you please share a few links?

There are several links to the audios and videos.  They can be found under Dr. Tom’s Gluten World @ theDr.com.   Topics mainly are focused on gluten sensitivity and how it harms some part of the body, how to test for it and how to treat it.

Are you involved in public speaking engagements?  If so, how might one stay up to date on your schedule?

I travel the world, educating on the topic.  On the website,  theDr.com, my calendar is located under the tab, Where is Dr. Tom.   Check often as my schedule changes frequently.  I very much enjoy giving General Public Lectures in cities where I am teaching to Health Practitioners. Requests to have me speak at an event can also be done through theDr.com or by contacting Karen@theDr.com.

I am sure that some of my readers will be interested in staying connected with you on a regular basis, do you publish a newsletter which one could subscribe to?

Yes, one can sign up for our newsletter at theDr.com.

Before I end off, do you have any future plans of expansion that you would like to share?

Sure, there will be a series of short books and Webinars released soon, designed to educate the general public as well as practitioners on the subject of gluten sensitivity.
And in closing, is there anything at all that you would like to share with readers?

Don’t underestimate the power of the silent killer in ‘gluten’.  This kills people.  At this point, with the best of research out there, if you have a gluten sensitivity, it must be a lifelong avoidance.  As of yet, there is no drug, no shortcut, it’s a lifelong food plan. It’s very doable.  If you need help, use the local Celiac Support Groups, or the gluten free program at theDr.com to get started.  Find someone that is knowledgeable.  Get tested.  Educate yourself.  If you don’t know or are unsure, then get tested.  There is new testing available as of January, 2011.  They are available to practitioners at CyrexLabs.com or patients and practitioners, at theDr.com.

http://www.thedr.com/

248-790-5428

Tina Turbin

www.GlutenFreeHelp.info

k.m.

Here is a very interesting article from Sasha Cagen:

Imagine there is a food additive that slowly poisons you and can even kill you. Now imagine you have no way of knowing whether it is in your foods. Three million American celiacs and I find ourselves in this situation. We have been patiently waiting for the FDA to pass a gluten labeling law while Brazil, the European Union, and Australia acted years ago.

On May 4, activists will be baking a 12-foot gluten-free cake in Washington, DC to get the FDA and Congress to take long-overdue action on this public health crisis. It’s high time the U.S. caught up with the rest of the world.

I’m a diagnosed celiac. My doctor’s orders are to strictly avoid gluten for the rest of my life. I cannot eat even a speck (say, a bread crumb). Celiacs who keep eating gluten have a sixfold higher risk of developing cancer and increased risks of osteoporosis and other autoimmune conditions. Gluten causes a celiac’s intestine to attack itself and destroy the villi, which are tiny hairs that reach out to absorb food. Over time, celiacs don’t absorb the benefits of food.

Gluten is a protein found in wheat, barley, rye and oats. The obvious no-no list includes beer, bread, cake, cookies, pies, and soy sauce. But it doesn’t stop there. Manufacturers may use gluten as a thickening agent in surprising foods like ice cream and salad dressing.

Food manufacturers are not required to disclose whether a product contains gluten.

The solution is simple.

A rule that would require manufacturers to tell us if a product contains gluten would eliminate thousands of accidental “glutenings.”

My Story: Fatigue and Anemia Point to Celiac

Last fall, I felt so depleted I could barely type an email. First my blood tests revealed iron-deficient anemia. Additional blood tests — and then a stomach biopsy — confirmed that I have celiac too. Celiac explained the anemia. (I wasn’t getting enough iron because my stomach couldn’t properly absorb food.)

I was relieved to get a diagnosis with a dietary solution. Being diagnosed as celiac is a huge life change that takes time to fully absorb. It’s changing how I cook, socialize, and travel. My energy is back. I believe I may have more energy than ever before once my body is fully healed. It’s boggling to think that I have been eating food for (who knows how long) but not receiving full nutritional benefit from it.

But it’s making me crazy to live in a country that is so far behind the curve on gluten safety. Every time I go to the supermarket I find myself questioning whether a product may be safe. I have already accidentally “glutenized” myself several times; when I get glutenized, I turn into a depleted zombie.

Three million (or one in 133 Americans) are celiac, and 18 million are gluten-intolerant. That’s 7% of the population. How can anyone host a dinner party or Thanksgiving without reliable product labels? Will my guests be able to eat safely? Without labeling, who knows?

Europe, Brazil, Argentina, Canada, and Australia all have labeling laws that standardize what “gluten-free” labeling means so consumers can trust that a food is safe to eat.

American food producers can slap “gluten-free” on a label and there is no process for verifying that it’s true or the food is safe. And what does “gluten-free” mean? Other nations have set standards for a safe amount. (It’s technically impossible to create many products with zero gluten.)

In the absence of a definition, each manufacturer decides what it thinks is safe. Some vendors are more deliberately deceptive. In North Carolina, a man took regular bread and labeled it gluten-free, sickening dozens.

There are many hidden sources of gluten. Last week my friend Agnes invited me over and sweetly offered me a plate of gluten-free food: dates, goat cheese, with roasted nuts on top. But there was no label on the nuts and sometimes nuts are roasted with a seasoning mixture containing gluten. Ditto for any product with “natural flavorings” in the ingredients list. Sometimes they contain gluten, sometimes not. There are so many gotcha moments for a celiac: Oh, %@#$@#! That’s why I can’t get out of bed!

What’s the Hold-Up?

Congress charged the FDA in August 2006 with the responsibility of issuing a rule defining “gluten-free” for food labeling. Congress required the FDA to issue a final rule no later than August 2008. Nearly three years later, the FDA still has not acted.

By contrast, Brazil passed a law requiring that food manufacturers disclose whether a product contains gluten in 1992.

The FDA makes the excuse that it has spent years reviewing scientific debate what gluten-free means. By now Europe and many governments elsewhere have decided the limit is 20 ppm (parts per million).

The longer the FDA lags, food producers put gluten-free on labels and benefit from sales without investing in procedures that ensure safety.

A new group called 1 in 133 is organizing a gluten-free summit May 4 in Washington, DC to push the FDA into action during Celiac Awareness Month. The summit is the brainchild of two gluten-free activists, John Forberger, 30, a triathlete who has been to the hospital 17 times due to accidental glutening, and Jules Shepard, 40, author of The First Year: Celiac Disease and Living Gluten-Free. John and Jules originally met via Twitter and have done all their organizing via social media and phone.

Not Just Any gluten Labeling Law, a Good One

As currently proposed, the FDA would establish a scientific definition for “gluten-free” but would still be entirely voluntary for producers of food to use this designation and there would be no certification process.

Shepard says it may better to go back to Congress before the FDA acts to push them to issue a more meaningful rule requiring manufacturers to disclose if gluten is present in a product (as they are required to do for allergens like peanuts, wheat, and shellfish according to the Food Allergen Labeling and Consumer Protection Act of 2004). Shepard and her fellow advocates are organizing briefings with members of Congress for May 4.

One possible solution is getting barley and rye added to FALCPA so that all sources of gluten are included.

“If you were to poll people to ask people what they think this FDA labeling provision means,” says Shepard, “most people would think it would create a labeling law similar to what we have for allergens. I don’t think most people understand we are just setting a standard for ‘gluten-free’ that manufacturers can choose to use or not.”

“Every year new data comes out showing that celiac, gluten intolerance, and other medical conditions requiring a gluten-free diet are more widespread than previously believed. That alone is a reason to go back to Congress,” says Shepard.

“This is a public health issue that is going to get a lot more attention as numbers are recognized. We are hoping our initiative will spur on Congress to take such action, so that the end result will not just be some kind of gluten-free labeling regulations, but rather, good gluten-free labeling regulations.”

To show your support for gluten labeling laws, sign a petition at 1 in 133.

Tina Turbin

www.GlutenFreeHelp.Info

k.m.

      There are several organizations in the United States which are researching the disease and working hard to raise celiac awareness and support. One such organization is the Celiac Disease Research Center at Columbia University, headed by Dr. Peter Green, MD, a Professor of Medicine at the University. He is personally responsible for the diagnosis of 2,400 people with celiac disease every year and is dedicated to increasing the celiac diagnosis rate in the United States.

     A higher rate of diagnosis yields a higher rate of support, Dr. Green says. This means more and more grocery stores and restaurants offering gluten-free foods and gluten-free cooking to gluten-intolerant consumers. Abroad, there are more gluten-free options available because there are more people diagnosed with gluten intolerance or celiac disease. For instance, every pizzeria in Sydney, Australia offers gluten-free pizza, made with gluten-free flour.

     Why is America way behind in celiac awareness? It probably has something to do with the fact that celiac disease is the only autoimmune disease that the government doesn’t support with research grants. Centers such as Dr. Green’s Celiac Disease Research Center are one-hundred percent dependent on charitable donations or university funds. Even though diagnosis is slightly up for celiac adults, this isn’t enough to raise awareness and bring relief for the three million people who suffer from celiac disease, nearly ninety-seven percent of whom don’t even know the cause of their painful symptoms. With increased diagnosis, we will surely see increased support, and soon the celiac community will be able to enjoy the same quality of life and food and cooking options which is enjoyed by, for instance, the lactose-intolerant community.

Tina Turbin

Tina Turbin