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.
Follow Sasha Cagen on Twitter: www.twitter.com/sashacagen
I know, I know. I don't always follow that rule either. Part of the problem is we have *convinced* ourselves that we *must* eat a certain way or we're wrong. Unfortunately we convinced ourselves in a direction that is slowly killing us--again, whether or not we're celiac. How about we convince ourselves in the other direction. Drop the vegan idiocy, drop the industrial food fanaticism, quit being scared of cooking and just get on with it. If your great-great-grandparents wouldn't recognize it as food (my grandma's an industrial food junkie along with most of her generation!), you probably shouldn't touch it. Sorry but that includes natto, tempeh, tofu, and (good God in heaven) Veggieburgers.
Also, many other auto-immune conditions require a gluten free diet, including thyroid diseases and autism, to name a few.
Eating a Gluten Free diet for medical conditions, even without Celiac Disease, requires no gluten to enter the system. None. Zip. Not even a crumb. Our bodies were made in such a way that the tiniest little toxin to enter our systems is immediately attacked by our immune systems. Which is great. For fighting off a poison. Not so great if it puts us at risk.
(Just for fun: try to imagine yourself living with chronic flu like symptoms. I mean, full blown flu like symptoms. All day. Every day. Oh - and then try to imagine yourself in the hospital, problems with your other organs, rail thin like a skeleton, and the doctors can't figure out what is causing it until - voila - they notice the villi in your small intestines are completely flat and food is passing right through you without being absorbed. True story. I've been there.)
Toxicology and Applied Pharmacology 237 (2009) 146-153: Effects of wheat germ agglutinin on human gastrointestinal epithelium: "Here we show that at nanomolar concentrations WGA is unexpectedly bioactive on immune cells . . . At nanomolar concentrations WGA stimulates the synthesis of proinflamatory cytokines . . ."
British Medical Journal Gut 2007; 565:889-890: Is gliadin really safe for non-coeliac individuals? Production of interleukin 15 in biopsy culture from non-coeliac individuals challenged with gliadin peptides. "Thus, since the toxic 19-mer elicits its harmful effect through a DQ2-independent mechanism, we hypothesise that the innate response is common in patients with and without CD, whereas the adaptive response is exclusive of susceptible patients with CD."
PLoS ONE. 2007; 2(8): e 687: Lectin-Based Food Poisoning: A New Mechanism of Protein Toxicity: "Lectins (wheat germ agglutinin) potently inhibit plama membrane repair, and hence are toxic to wounded cells . . . lectins, based on the damage they do to the lining of the GI tract, and their hypertrophic effect, have been implicated in, respectively, celiac disease and cancer . . ."
I think gluten is just the tip of the iceberg. There is so much we do not know on how the body works, we think we do and it surpises us,
I think what is leading cause of so many allergies is the issue of gluten and damage to the intestines.
Once there is inflammation and such other proteins and foreign matters gets through to the blood and the body launches an attack. If you have any kind of allergy it is always the food!
The real gluten free products would be like cookies, pasta, bread and crackers.
I think the numbers are really skewed to what constitutes as gluten free foods.
We have been serving the gluten free community for over 12 years.
Find the best tasting gluten free foods at http://www.glutensolutions.com.
I would like to point out that although most commercially-available oats test positive for gluten, it's not because they naturally contain gluten, but actually instead because of cross-contamination in processing (another great reason for GF labeling laws!). There are some select companies producing certified gluten-free oats though -- they have thankfully brought oats back to our gluten-free tables!
Regarding beer, traditional beers do contain gluten, but there are several delicious gluten-free beer offerings available now -- springing up to serve this growing market need. The Beer Lobby in Canada recently persuaded their law-makers to exempt certain alcoholic beverages from their new gluten-free labeling laws though; I do hope that US regulations will be more encompassing.
I also want to thank everyone (like some of you who have posted here!) who has taken 30 seconds to sign our petition! From 1in133.org you can also send letters to FDA, HHS or Congress, urging them to take up our cause. Only by joining together as one voice can our message be heard - thank you!
For those of you who have never had to deal with a serious dietary restriction, shopped or baked for someone with a severe dietary restriction, I would hope that you would bow out of these conversations about changes that would so drastically affect and improve our lives. Respect would dictate as much - thank you.
~jules shepard
1in133.org
One of the most common symptoms are dry raised bumps on the upper arms & in more severe cases panic attacks begin. This is related to normal cortisol release being hindered.
I'm almost to the point of thinking I have a brain tumor, but fear becoming a hypchoncriac.
I"m not kidding, out of the blue 5 days ago I wondered if I had a gluton intolerance. I am not anemic but lyme disease (2004) thyroid malfunction (began in 2004) then cancer makes me thing my immune system has been compromised one too many times.
I'm going to be fan #3 for your help! again, Thanks!
He had his surgery which was declared sucessful and 3 years latter he became so thin, weak, we all thought he was dying and that the cancer had returned. On our visit to his doctor, she stated she thought he may have celiac disease instead. He did
A diet change was all it took to bring him back from the brink to full health, even his arthritis cleared up. You see celiac is an autoimmune disease NOT a digestive disease or allergy. That is why it can lead to so many other diseases including cancer and at the end death by starvation. He was litterly starving to death, his small intestines was NOT absorbing any nutrients from the food he was eating, gluten was posining him.
I highly recommend you research this more, just google Celiac disease, like I did when I first found out he had this, there is a wealth of information out there. Also if you don't want to get the tests, just take yourself off gluten, for a month, not easy but very doable. Good luck to you, if you want more info you can find me on facebook under Judy Bell.
"CD, an autoimmune enteropathy, results from an inappropriate T-cell-mediated adaptive immune response against ingested gliadin. In the past few years, though, it has become apparent that "classic" CD represents the tip of the iceberg of an overall disease burden. An emerging problem is the clinical characterization of a group of gluten-reactive patients, accounting for roughly 10% of the general population, presenting with symptoms similar to CD but with negative CD serology and histopathology. As in CD, these patients, here and elsewhere referred to as GS, experience distress when eating gluten-containing products and show improvement when following a gluten-free diet."
There is also some pretty strong scientific evidence that all humans have at least some adverse innate immune reactions to gluten, including production of Interleukin 15 in response to gliadin and inhibition of gut tissue repair by ingestion of wheat germ agglutinin. See, e.g. the work of Paul McNeil MD at the Medical College of Georgia, found at Miyake K, Tanaka T, McNeil PL, 2007 Lectin-Based Food Poisoning: A New Mechanism of Protein Toxicity. PLoS ONE 2(8): e687. doi:10.1371/journal.pone.0000687.
fanned
check this out: http://thehealthyskeptic.org/9-steps-to-perfect-health-1-dont-eat-toxins
Yes, it costs more, but it beats anaphylactic shock hands down.
It's unrealistic to expect that most people will call the manufacturer about every product. Whole foods are wonderful but it is not realistic to expect that all Americans will eat only "naked foods" like fruits, salad, potatoes, rice and meat all the time. There's a simple solution to this as far as products go (restaurant safety is trickier, as you note.) Manufacturers are already required to list eight allergens--so let's add barley and rye and we can know at a glace whether a product is safe to eat.
Why not? That's what we used to do. Quit defending the food industry (the ones who make industrial food)--your kind of attitude is the reason it seems implausible that any of us would ever walk away from it. You're giving them an easy ride. Just quit eating their crap. Simple.
There's one good answer!
Maybe a Doctor or Historian can chime in on anything else I may have missed.
http://www.fda.gov/food/labelingnutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106187.htm