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 6^th. 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!

 

St Pat’s Day; Safe GF Beers and Food!

How do you navigate Saint Patrick’s Day with Celiac, Wheat Allergy or Milk Allergies? Well, I am gonna give you some insight and talk about the food and the beer. Yup, where do you get some safe food and the Good, the Bad and the Ugly when it comes to Gluten Free (GF) and Gluten Removed Beers!

When I remember St Paddy’s day, I think of corned beef, Irish Stew, Colcannon (Irish Potato Salad) and beer.  I have great memories of my childhood and the parties my parents would throw with our friends, neighbors, parish priests and nuns all letting their hair down to celebrate Saint Patrick; the Patron Saint of Ireland.

Who was this Saint Patrick and why do we all want to party with this guy?  Why do we have this religious and cultural celebration each year on the anniversary of his Death; March 17th?  Well, it started off as Religious Holiday in the 1600’s; a Holy Day of Obligation for Catholics because it was he who brought Christianity and Catholicism to the Pagans of Ireland. It is said that he taught them about the Holy Trinity using a 3 leaf clover.

I guess everyone caught onto all of the fun that the Irish were having and now this holiday is celebrated in more countries than any other national festival!  Ah, those were the days..not that I was around in AD 385-461, hanging out with St Pat, but passing on traditions is what the Irish do best. However, way back in once upon a time, time;  I could go to church, come home and celebrate and I could drink beer; real beer. Most Catholic Dioceses allow consumption of meat on Friday when the holiday falls on a Friday during Lent. The good news is that you have dispensation if you live in the Archdiocese in Baltimore or Washington, DC!  The Cardinal said…let them eat meat!

The Danger Foods on St Paddy’s Day: These memories get my mouth watering  for the real deal folks! Many don’t realize it but a whole lot of beer (Guinness) can be put into the stew and even the corned beef or something as innocent as a burger! (yes, a burger). Not to mention that the stew in mainstream places is thickened with flour too. Although, you don’t need to thicken with flour when you have potatoes in a stew.  Then there is the butter and milk in the mashed potatoes in a shepherd’s pie. Wow, talk about feeling left out. Not this year gang, you can have traditional Irish fare without sacrificing taste or getting sick! Here we go gang; first the food and then the Beer.

FOOD: We have you covered with safe food at the Cafe, Deli and Bakery; then you can pick up your safe beer on the way home!

-Traditional Irish Stew: Maureen’s recipe with Beef and Lamb and a soft roll to soak up the juice; Free of Gluten, Dairy and Top Allergens

-Traditional Reuben: Maureen’s recipe available free of all top allergens or choose real Swiss cheese.

-Irish “Cream” Whoopie Pies: Chocolate and mint “cream” filling!

Beers: The Good, The Bad and The Ugly!

Taste Good GF Beers:  I have not had them all, so the other source is Gluten Dude!

-Pyro (Burning Brothers Brewing out of MN, co founder has Celiac)  Click Here

-Glutenberg (Quebec, Canada; owner gluten sensitive) Click Here

-Harvester Brewing (Ground Breaker Brewing out of Portland, OR) click here

Taste Bad GF Beers:

-Redbridge: I really, really, really tried to like this one back when it came out; it was my only choice and tasted like sorghum, bitter, yuck enough said! Turned m

Ugly Gluten “Removed” Beers that you should not drink if you have Celiac or Gluten Sensitivity or serious allergy to wheat or rye or barley!

-Omission

-Daura

-New Planet

I have had several gluten sensitive customers tell me that if they have 2 or more of these “Gluten Removed” beers, they get sick..so why would a person with Celiac. Gluten Sensitivity or a Food Allergy try them? It is like people knowing that “GF” Cheeri-oh-nos, as I call them, are not safe but are still eating them. Then they go to the doctor when they can’t understand why they don’t feel good and he says their celiac antibodies are high. Crazy. Here is the info you need to know about Gluten Reduced Beers and why they ARE NOT safe referencing a study done by GIG (Gluten Intolerance Group). Click Here

What does Gluten Dude have to say? 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! 

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

Nima Sensor, Sunflower Cafe to Close, New Day GF Hopes to Re-open

This week I tell you all about the new Nima Sensor and how it works.  Three weeks in a row I am having to tell you about gluten-free places closing; The Sunflower Cafe/Bakery in Williampsport, PA will close on October 30, 2016. Lastly, I will share some news about New Day GF hoping to open in a new location!

The Sunflower Cafe/Bakery in Williamsport, PA will close it’s doors. I was informed by one of my facebook followers last week and I immediately went to Sunflower Cafe’s facebook page. I  went to her page and read back about one year; I started crying.  She was very open about her struggles; talking about selling furniture to pay her business loan and trying to do it all by herself because she could not afford to pay help. Wow; she had 5 star ratings.  Let’s look at this situation by looking at the numbers:

Population of Williamsport, PA: 29,349 x 1.3% = 381 Celiacs

-This means every Celiac and their friends/family would need to eat there at least once a week. I know from experience that this did not happen.  Looking at this population statistic, I know it could not work because there are no large cities nearby. I am thankful to Sunflower Cafe & Bakery for being a safe haven for those with Celiac Disease.

Everyone is talking about the new Nima Sensor: Dining out in restaurants full of gluten is a calculated risk that many take way too often and pay the price later. Now you can test your food before you eat it! This is great news if you have Celiac Disease or a Wheat Allergy. Nima Sensor is a portable sensor that tests liquid and solid foods for the presence of gluten (wheat, rye and barley) in about two minutes. Nima hopes to be able to test for top 8 allergens in the future! My thoughts are:

1. If you eat out a lot, you can make sure your food is safe before you eat it.
2. If people detect gluten in their meals it will drive them back to the completely GF places who are doing it right!
3. Cost for the device is $279.00
4. Refill test capsules cost $60.00 for 12 capsules or $5.00 per test.
5. Pretty pricey; add $5.00 to the price of your meal.
6. Your meal is probably cheaper at the dedicated GF place; you don’t need to test it.
7. If you must eat at a regular restaurant; a  $5 test is cheaper than taking days off work.
8. If it detects gluten, the restaurant probably won’t refund your meal; especially if they have a disclaimer on their menu!
9. Level of detection is to 20 ppm (parts per million).
10. I won’t be getting one right now because I am always at One Dish Cuisine!

Click Here to learn more

Go Fund Me Page for New Day GF:  As I told you two weeks ago; this 5 star rated Gluten Free and Peanut Free cafe  was in a small town, too far out from St Louis, MO and had several competitors that had opened up in St Louis.  Last Friday they posted that they identified a new location just outside of St Louis and were awaiting “capital” or financing. It looks like they were not able to obtain financing. A “Go Fund Me” page was posted to their facebook page. They need to raise $300,000 in order to re-open. I hope that they can raise the funds, re-0pen and prosper in the new location.

 

 

Cheeri-Oh-Nos, Not GF Says Canadian Celiac Association!

In the summer and fall of 2015, I spent a lot of time blogging about the sloppy processing and testing of General Mills “Gluten Free” (GF) Cheerios. Not only are they not using certified GF Oats, they are using sub-par testing methods to make their”GF” claim! Hence the nickname that I gave them; “Cheeri-Oh-Nos”! The Canadian Celiac Association has just advised those with Celiac Disease or Gluten Sensitivity not to eat them.

What happened and why have I been perpetually banging my head against the proverbial brick wall for over a year? How can this be so?  You just won’t believe it, so here is the re-cap and update.

Basically, the problem is that General Mills (GM) is using contaminated oats and “shaking” them in order to get off the offending wheat, rye and barley. Then they are using a testing method known as “means testing” to get their final ppm. A product must test below 20ppm to be called Gluten Free. So, if they make a batch of cheerios, they will  take out several samples…if one sample is 21pm, one is 80ppm and one is 5ppm..they would combine those to get the actual parts per million. Then they would keep adding in batches at lower ppm to get their 20ppm score. That is dangerous because in the end, you can mix them together over and over but there is still a high likelihood that some or many boxes will test higher than 20ppm.  The big problem is that they were not testing the final batch or boxes.

This practice resulted in many Celiacs getting sick and complaints to the FDA. Eventually GM had to recall 1.8 million boxes of GF Cheerios.  How can this be? Well, it is simple folks, the FDA does not mandate testing or a particular method for testing..they suggest that each company regulate themselves.  Yup, GM is NOT looking out for those with Celiac Disease or allergies to wheat, rye and barley!

A regular (celiac) customer came in last month and told me that his blood levels were elevated and he was having stomach problems and could not figure out why because everything he is eating is GF. He told me he would be going in for new endoscopy and biopsy in the next few weeks. I asked him, to tell me what he was eating for breakfast and he said “GF Cheerios”.   I asked when his issues started…he said around that time. He was shocked when I filled him in on the happenings. I directed him to my blog articles from last year and suggested he also do a google search and read what Gluten Free Watchdog has been saying and also suggested he remove the “GF” Cheerios and see how he does.

If you are a Celiac, Gluten Sensitive, or have an allergy to wheat, rye or barley; you are playing a game of Russian Roulette if you are eating GM’s GF Cereals.

Many of us have been outraged that the Celiac Associations in the US have not been more vocal about this. Last month the Canadian Celiac Association recommended that those with Celiac Disease or Gluten Sensitivity not eat them.  Gluten Free Living Magazine just wrote an article about this. Click Here to Read Article

 

 

How Much Gluten Can Make a Celiac Sick? Dr Fasano & FDA Study Results

How much gluten does it take to get you sick?  Well according to Jane Anderson, a Celiac and Gluten Sensitivity expert with About Health, the amount varies from person to person. Dr Fasano and the FDA have different ideas on this. Basically it can be:

-as little as a crumb                       -as much as 1/350th of a slice of bread

-less than 1/500th of a teaspoon of flour (or 1/233,333 of that slice of bread)

Wow, this is a great article and a must read if you or a family member have Celiac Disease or Gluten Sensitivity, especially if you or someone you know doubts how little bit of cross contamination can make you sick. I got cross contaminated and suffered greatly, see January blog post.

http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm

Testing Food for Presence of Allergens or Gluten

From May 2014 Newsletter:

Food Testing Explained; 0ppm does not exist!

I was surprised to find that many people really don’t understand Food Allergen Testing.  There was a discussion going around on a celiac group recently about people wanting 0 ppm. Many don’t truly understand the testing that is available or the testing that we do here. So, I will explain it to you in a way that is easy to understand:

The FDA has set a threshold for Gluten in Food at 20 ppm or less. (ppm means parts per million).  We are certified to 5ppm for Gluten by the Celiac Support Association (CSA). There is no lab test that detects 0ppm.

There is no threshold set for other food allergens, this is probably due to the different thresholds of sensitivity from person to person.  Also, there is no lab test that detects 0 ppm!

So, when I send out food samples for testing, I am only as good as how low the lab can detect for each allergen.

A result can come back at less than 2.5 ppm (< 2.5ppm).  What that means is that the lab cannot detect any lower than 2.5 ppm. So, it could actually be 2.4ppm or 1ppm, we just don’t know! The level of detection capability is different for each allergen.

If a lab test comes back with an exact number, then that is what it is, I like exact numbers, we know what it is; but there is a margin of error and you can get false positives because the lab has to inject the sample with the allergen in order to even perform the testing. When a false negative occurs, the lab will re-test the samples.Since the FDA does not regulate thresholds for other food allergens, each company has to pick their own standard for their allergen testing. Periodically I will choose items that contain the most ingredients that we use at ODC and send them out to be tested.  I aim for below the lowest level of detection available on each allergen and am pleased with our latest results.

So what does this mean to you, the Celiac or the person with Food Allergies?

The question you need to ask yourself is this:

“When I buy a product that is allergen free, what exactly does that mean?” (you have to ask them)“How do I know if a company tests their products & what their standards are?” (you have to ask them)

“Where am I safer when I go out to eat; at ODC or at a  restaurant that says they have Allergen Free or GF but don’t test?”  (I would say hands down, at ODC)

Testing costs a lot of money, this last round cost over $3,400.00 for 5 products.

It is not possible to test every single meal, every day in a restaurant. Below is an example of a recent test result:

Results for Mock “Rye” Bread

-Gluten:                       5 ppm                           FDA Standard 20 ppm

Item Tested              Result PPM           Level of Detection PPM
-Milk,Casein,Whey:    <2.5 ppm                     2.5
-Soy:                               <2.5 ppm                     2.5
-Egg:                              <2.5 ppm                      2.5
-Fish:                             <1.4 ppm                       1.4
-Sesame:                       <0.2 ppm                      0.2
-Peanuts:                      <2.5 ppm                       2.5
-Almond:                      <2.5 ppm                       2.5
-Cashew:                       <2.5 ppm                       2.5
-Hazelnut:                     <2.5 ppm                      2.5
-Pistachio:                     <2.5 ppm                      2.5
-Walnut:                       < 0.35 ppm                   0.35