FDA Not Enforcing GF Labeling Rule?

Recently, Tricia Thompson MS, RD and founder of GF Watchdog has asked the Gluten Free Community for their help.  She is saying that it appears that the FDA is not enforcing the GF Labeling Rule put in place in 2013.  She also has a great link to some information about self testing Gluten devices (at bottom).  Click Here to Read the Ruling

I have been saying this for years. “The FDA does not actively enforce the GF Labeling Rule!” Every time I would say it (last year at the GF Expo; I was given shocked and appalled looks; like I was making it up!) So,  I am glad to hear someone else say that the FDA does not seem to be enforcing the GF Labeling Rule.  There certainly is no accountability for restaurants because the local health department does nothing about it.  If you read it, the actual Rule/Law, said that we (GF manufacturers) would be self regulating; so this is not big surprise to me. Canada will not allow Cheerios to label their GF Cheerios as “GF” anymore, but the United States says, no problem Cheerios, keep making folks sick!  Expecting the FDA to do something is kind of funny…they made it a rule, not a law, because they don’t have the staff to enforce it.

So, I am not really surprised by any of this.  Below is what Tricia is asking of us.  I think this is well worth your time if you or someone you love has Celiac Disease, Gluten Sensitivity or a Wheat Allergy!

Dear Gluten Free Watchdog community,
First a request. We are continuing to remind FDA of our petition and ask for an update. The most recent “reminder” was sent to the Agency on July 6th. While we wait to hear from them, I have a favor. There is a newly established Twitter handle (@FDASpox) for Jennifer Rodriguez, Acting Associate Commissioner for External Affairs, U.S. Food and Drug Administration.
Today I sent her the following tweet: “Jennifer @FDASpox can you please comment on why the FDA does not appear to be enforcing the gluten-free labeling rule? The agency is aware of numerous mis-branding violations but does not act to have products removed from store shelves. Please click here to see what Tricia has observed  
If you could please tweet your own version of the above or simply re-tweet my tweet that would be great. Thank you!
Also, if you haven’t had a chance to listen to the webinar by Adrian Rogers from Romer Labs on Gluten analysis and the challenges of consumer testing devices, please make the time. You won’t be disappointed. As someone in our community posted to GFWD’s Facebook, “I think everyone in the GF community needs to watch this. Again, Adrian drives home the point that testing foods are not as easy as it appears. It’s a very complicated process with lots of variables.”
The link will only work for the next couple of weeks. Both the audio and slides are available. Click Here 
If you have any questions for Adrian, please post them by Clicking Here
Kind regards,
Tricia Thompson, MS, RD
Founder, Gluten Free Watchdog, LLC
Please check the above information out folks, Tricia is fighting for all of us!
We-Need-Your-Help

 

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New Celiac and Autism Research

Every year I get my fundraising letter from Dr Fasano at the Celiac Center at UMass. What I love about the letter is that he highlights some of the studies that they are doing at this time. They are doing some really cool stuff! (what I hate is that it comes on paper in the mail, so I had to paraphrase and type all of this stuff into the computer rather than give you a link to click on) Once again; I am predicting that many of the big breakthroughs on celiac and autism will come from Dr Fasano and the gang at UMASS Center for Celiac Research and Treatment.

-Collecting Diapers for Celiac Research for their  Celiac, Genomic, Environmental, Microbiome and Metabolomic Study. Basically, they are collecting stool, blood and other tissue samples from infants and mothers from the US, Italy and Spain. They have more than half of the 500 babies already enrolled. The goal is to understand why some people who are genetically at-risk will go on to develop celiac disease; while others who are at risk don’t develop it. By studying many factors along with the microbial colonies in the gut, they hope to ultimately prevent celiac disease before it begins. Well, if I was a baby and had a diaper, I would enroll myself in this study.

-Building an Intestine in the Lab where they are using intestinal tissue from volunteers to grow intestinal “organoids”. They use the 3D mini organoids to study the effects of different drugs and pre/probiotics on the human intestine. I am glad to see this study happening because I remember Dr Fasano saying on one of his visits to the cafe that his fear is that pre and probiotics may be overused and we might become immune to them like what is happening with antibiotics.

-Connecting the Mind and the Gut: the “enteric nervous system” is like our “little brain: in our guts and it’s communication with our “big brain” can have enormous effects on our mood and health.  I remember Dr Fasano saying “the gut is not like Las Vegas; what happens in the gut does not stay in the gut”.  Parents of kids with Autism have been saying this for about 20 years!  I am so glad to see this area being really researched. Recent results (Dr MR Fiorentino’s lab) showed an altered blood-brain barrier and impaired intestinal barrier could very well play a role in neuroinflammation in those with Autism Spectrum Disorders. They hope to make significant contributions to discovering a mechanism that could be used for prevention. (The belief used to be that the body and brain have different immune systems and are separate and therefore don’t communicate; but researchers at UVA discovered the link via the lymph nodes. I blogged about this 2 years ago)

-Celiac Education and Outreach: Celiac Symposium last April and outreach and donations for food for hurricane victims.

The Center for Celiac Research and Treatment is dedicated to improving the quality of life for patients with celiac disease, while learning the cause of the disease and finding a cure.  However, due to reductions in the NIH  (National Institute of Health) Budget they are reliant more than ever before on donations!  

This is one cause that I scrape up some money to support each year.  donate here

Learn More Here

 

A Tribute to Super Hero Moms!

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Mother’s Day is here again and it got me thinking about the mothers who are in my life.  The more I thought about it, the more I realized how different the mothers are that come into our cafe, deli & bakery. They are different by necessity. Each year on Mother’s Day we all acknowledge the mothers in our lives but a mother to a child with food allergies, celiac disease or autism is quite different because of the additional burden when it comes to caring for her child. A very big part of this care is safely feeding that child.

If you think about it, most families can go out to eat and celebrate mother’s day and they can go out to eat anytime and anywhere.  If invited to a BBQ; they can go  and relax and eat with friends and family, they can order take out for a quick meal at home, they can go to school or on vacation with no worries when it comes to eating. That is something that the parents who come here with their children are not able to do.

If you know (or are) a mom to a child with Food Allergies, Celiac Disease or Autism, then you know what I am talking about.  If you are not, I would like you to imagine your life and what it would be like if you had to inspect every morsel of food that your child or children ingest because of the fear of behavioral changes, severe sickness or the possible death of your child.

Imagine Yourself in the following situations:

-Your child with autism is not invited to birthday parties. What do you need to do every day to reassure this child that they are truly loved and special?

-Your child is invited to a birthday party and you have to bring every morsel of food with you to make sure that they are safe. You can’t just drop them off and then go out for coffee; you have to watch over them like a hawk to keep them safe from all of the unsafe food around them. What would that be like for you?

-Your family is invited to Christmas or a holiday meal and you still have to make your own safe meal to bring for your child. You never get a break, what would that be like for you?

-Imagine going on vacation and the additional weeks of prior planning required in order to  find stores where you may be able to find safe food and trying to find restaurants that could safely feed your child.  Imagine coming up empty handed and knowing that when you go on that vacation, you will need to drive rather than fly so you can bring all of your coolers full of safe food with you.

-Imagine not being able to eat out on vacation, you have to make every single meal at home. So, basic hotels are out of the question, you must rent a full house with a full kitchen. You never get a true vacation.

-Imagine planning that trip to the beach, renting that ocean front condo and you or your child can never step foot outside or onto that beach because they are selling dry roasted peanuts on the boardwalk right in front of your condo and the sand is littered with peanut shells.  All your child wanted was to go to the beach and you made that happen but your child could only look at that beach through the window!

-Imagine going to a restaurant that says that they can accommodate your child’s allergies and watching them get gravely ill after eating their first bite.  For many this includes administering epinephrine and an ambulance ride to the hospital and a several day stay in that hospital. You then feel guilty for trusting that restaurant or waiter or chef with your child’s life.

-Imagine reading and inspecting every food label, calling food manufacturing companies and being assured the food is safe.  You feed the food to your child and end up calling 911 because it was not safe after all.  How do you forgive yourself when you know it is not your fault, but you are there to protect your child…how do you process this and live with it?

-Imagine sending your child to school and panicking every hour of the day wondering if your child is safe, from food or from bullying; even when they are grown and in college!

-Imagine the hours spent educating family, teachers, nurses and other students at school about the seriousness of food allergies, celiac disease and autism.Or volunteering to mentor parents of those who are newly diagnosed.  Exhausting!  Then you still have to be nice to the doubters or those who don’t care how serious your child’s allergy is. Frustrating!

-Imagine telling  your family about your child’s shellfish allergy and a family member dangles a shrimp in front of the child’s face on Christmas Day.  Do you still talk to that family member?

-Imagine telling your family about your child’s Celiac Disease and they think that it is okay to give them “just a little bit” and they say things like “he/she does not look sick” or “are you sure it was the “gluten” making them sick?” (Like you and your child don’t know when they have ingested gluten…others know when they have a cold, the symptoms are easy to recognize each time you get a cold; the same is true with Celiac Disease and a gluten reaction.)

-Imagine trying to explain to your family or strangers that your child is not being a “brat”; and that he/she has autism and is having a difficult time adjusting to this new environment. Imagine dealing with the disapproving and incriminating stares from strangers and not ever being able to lose your composure.

-Imagine sitting across from your doctor and hearing him tell you that you have breast cancer and your first thought is “OMG, how will I safely feed my food allergic child while going through this?” (You know that well meaning neighbors and friends can’t bring meals that are safe for your child when you are going through chemo.)

These mother’s wear a halo and a cape that is invisible to many, but not to me. I see the invisible super hero emblem that you display proudly each time your child needs to eat. These mother’s are truly super heroes! I am not saying that these mom’s love their child more than other moms; what I am saying is that they spend more time actively loving, worrying and preventing tragedy than the average mother. These mothers and their children truly inspire me and I am thrilled to be able to allow them some time to relax and feel the difference when dining at One Dish Cuisine Cafe, Deli & Bakery. This is why I am committed to opening more safe havens for these children and their parents.

Mother’s Day would not be complete without honoring the other great mothers in my life. My mother-in-law, Pat, raised a wonderful son, David, who is committed to welcoming folks back to the table with me here at One Dish Cuisine.  Pat’s weekly presence and support mean so much to me and I am so grateful to have her love and support and to have her in my life.

Additionally, my daughter-in- laws are wonderful mother’s to my two grandsons! I am so thankful for their monetary sacrifices and the decisions they both made to stay home and be with their child and bringing them to the cafe so I can see them! Truly, incredible.

My ex mother-in-law, Emily, is still a support system to this day! She is still that safe port in the storm for me when I need to talk with someone and she always gives me the courage to stand up and dust myself off and move on when things go wrong. I am so grateful that we have maintained such a wonderful relationship and I have learned so much from her and am happy to still call her my friend.

For my sisters and sister-in-laws; who show their children the love and support that they need; unique to their own circumstances. Each of you inspires me with the challenges that you handle so well each and every day.  Thanks for being great moms and great sisters.

My mother, Vickie, who had seven children in eight years (no twins), buried two of them when they were young and still managed to pick herself up each day and  chose to see the “good” in her situation. Not only has she financially supported One Dish Cuisine but she taught me that loving and giving is the most important thing a person can do on this earth and when you combine that with following your passion; then you will feel complete. It took me quite a few years to get over the self induced “pity party” that I was having about my own situation, but thanks to my mom, I finally saw the light and understood that the food I was making for myself could also serve the needs of others.  I am happy to be able to live with passion, purpose and sleep well at night. I have never worked so hard or so many hours in my life and I don’t have any personal time for friends or family, but my mother taught me that this type of sacrifice is okay; knowing that what I am building here is so important for so many in need. I am so grateful that she taught me not to be afraid of challenges and that faith, love and giving are the most important gifts that I possess and that I have the ability to use these “gifts” every day; these gifts that I have don’t cost me anything when I give freely.  I am thankful for my mother never giving up on me, she is truly my hero.

Happy Mother’s Day to all of you great mothers, you all are Super Heroes!

I publish this each year.

 

“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

Our Food Testing Results; How Labs Test Food for Allergens

As many of you know, periodically we send out some of our food to a lab for allergen testing.  Even though our facility is free of allergens, we also count on suppliers to provide us with some ingredients.  Periodically testing our products gives us that extra confidence. (you can see report at the bottom)

This time we tested our Chocolate Cupcakes, “Rye” Bread and a Blue Menu Cheese Pizza. We have the lab test for the following allergens:  Peanut, Almond, Egg, Hazelnut, Total Milk Protein, Casein Protein, Gliadin (Gluten) Walnut, Shellfish (Crustacea), Soy, Sesame, Cashew and Pistachio.

It is important to understand how testing works. The lab has a very specific way of testing food for the presence of allergens.  The results come back in ppm (parts per million).  I am going to make this as simple as possible to understand.   The first thing you need to understand is that zero ppm does not exist; below, I explain why.

When an item is being tested, they assume it is at  0 ppm of the allergen.  They take the sample and inject 2.5 ppm (or some quantity) of the allergen into it. Then they test it to see how many ppm of the allergen it contains.  If it comes back at 2.5ppm, then there is no allergen detected..because they put 2.5ppm of the allergen into the food item. If it comes back at 5ppm. they know it contained 2.5 ppm of the allergen before injecting the allergen into it.  For an item to be called GF it must test less than 20ppm of gluten.

Some companies are certified to 10ppm (GIG), we are certified to 5ppm by the Celiac Support Association.  These companies who give GF Certification require the company to test their products and they charge the company an annual fee to stay in compliance. Companies that do this are those that take it seriously! Remember, the federal law only encourages companies making a GF Claim to test their products..it is not required by the law and the type of testing is not mandated either.  Look for CSA seal or GIG seal to be sure it is GF!

So, when you hear people saying that they want 0 ppm test results; it is just not possible. The test results show what the Detection Limit is (as low as the lab can go at detection) and the Methods they used to test the product.  Usually it ranges between 2.0 and 2.5 ppm. For gluten the testing can only go as low as about 5ppm.

How do I visually understand a Part Per Million?

“If you divide a pie equally into 10 pieces, then each piece would be a part per ten; for example, one-tenth of the total pie. If, instead, you cut this pie into a million pieces, then each piece would be very small and would represent a millionth of the total pie or one part per million of the original pie. If you cut each of these million minute pieces into a thousand little pieces, then each of these new pieces would be one part per billion of the original pie. To give you an idea of how little this would be, a pinch of salt in ten tons of potato chips is also one part (salt) per billion parts (chips).” *SOURCE: Cornell click here for more

When gluten is being tested, it is a little bit different. If they are testing Gliadin; only 50% of gluten is available as gliadin…so to calculate the results you need to multiply the gliadin ppm by 2!  So, if it is 2.5 on gliadin, it would be 5 ppm for gluten.

Testing is not cheap, this round of testing cost several thousand dollars. Here is what our testing results looks like! 

pass-with-flying-colors

tests-feb-2017

Gluten Free Watchdog

Many customers ask me how I learn about unsafe gluten free items so I decided to share this incredible site with you.  Gluten Free Watchdog randomly purchases and tests products for the presence of gluten.  Every week I get emails from them with test results of the products they have tested.  They test items based on what their subscribers want them to test and they test items randomly as well.

This is how I found out that GF Cheerios were not really GF. (see 2 previous blog posts)  I had heard this from many customers as well..telling me how sick they got when they tried them.  It all made sense when I read GF Watchdog’s report on them and how they are not using certified GF oats and they are not using solid testing methods to test the product.  I also learned about a Teff Flour today that is testing higher than 50ppm and it is Certified GF!

How does this happen?  How do you find out about it?

It is easy, just sign up on their website.  The cost is $5 per month and you get more than what you pay for from this invaluable service.

Click Here to Learn More

My Favorite Charity; Giving Tuesday

As many of you know, my favorite charities have to do with Celiac Disease, Autism and Food Allergies.  Each year, many of us choose to give to a charity and it is great that we do. I have to make a decision each year about where to put my donation.  This decision is easy to make when I look at where the donation will go and who it will help.

The criteria I use is simple. Where is the strongest need and will it help people locally in the Celiac, Autism and Food Allergy communities?  I choose SAFE Food Pantry because they are local and their mission is to bring safe gluten free/allergen friendly food to those in need. That is precisely what SAFE means: Supplying Allergy Friendly Emergency Food to those in need!

Well meaning family, friends and neighbors usually cannot safely feed those with Celiac Disease or food allergies when their is financial hardship.  The knowledge needed to safely prepare food is not mainstream and this leaves a big hole in the well meaning efforts to feed a family in need. The need is often left unfilled due to the lack of knowledge needed to prepare safe food.

I know first hand the hardship faced when there is an illness of a parent, a death of a parent, a loss of a job and the family is faced with trying to purchase safe food that costs 242% more than regular food. Over the years, I have tried to meet the needs of so many on my own. Unfortunately, One Dish Cuisine cannot financially support every family in need of safe food.  Our customer, Tiffany, saw this need as well and that is precisely why SAFE Food Pantry was started. To avoid any conflict of interest,  I am happy to say that I am on their advisory board only.  This incredible group of volunteers have been working hard on this for several year and are also One Dish Cuisine customers. I am so proud of their hard work.

SAFE Food Pantry is a 501 (c) (3) non profit and is local, here in Howard County, MD. You can donate safe shelf stable food or you can donate money to help them with the expenses incurred in running this food bank.  They are working with the Howard County Food Bank and hope to have them stocked soon!  When you are thinking of giving, please think of giving local, the need is so great!

Those with Celiac, Food Allergies or on a Gluten Free Diet for Autism are often left out in good times and they should not be forgotten in hard times. Thank you for your consideration. You can drop off a non-perishable donation anytime at One Dish Cuisine Cafe Deli and Bakery.

Click here to donate or learn more

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