FDA Labeling Law Post 1: "Verbiage"

I get a lot of questions regarding the FDA labeling law and how it should be interpreted. Most of these answers can be found on the FDA website's Q&A page, but I thought I would cover some of them a little more in depth.

Today, I will be talking about "verbiage" because it is one I misunderstood until recently. This is the question and answer on the FDA website:

(Full text of this below if you'd like to copy and paste)

 Previously, my understanding was that any form of stating gluten free such as "naturally free of gluten" meant the same exact thing as "gluten free" meant. While researching the topic, I discovered I was wrong. I definitely want to look further into this. They state the statement needs to be "truthful and not misleading," but what does that ultimately mean? If it's made without gluten-containing ingredients, are they are allowed to say that with zero regard to manufacturing practices? Could it potentially have a large amount of cross contamination from another product made on the same lines?

On a sidenote, this is such a misunderstood topic that I read an argument regarding the use of a dash in stating gluten free and how it determined whether or not they needed to follow the labeling laws (as in with it or without it didn't need to: "gluten free" vs "gluten-free"--I can't remember which way they argued was correct).  Please correct me if I'm wrong, but I've never read anything in the FDA guidelines pertaining to the use of dash when stating a product is gluten free.

As promised, here is the text of the verbiage above if you'd like to copy and paste the info:
Are statements like “made with no gluten-containing ingredients” or similarly “not made with gluten-containing ingredients” permitted on labels of foods bearing a gluten-free claim?
Yes. Neither the final rule nor FDA’s general food labeling regulations prohibit the use of a statement like “made with no gluten-containing ingredients” or “not made with gluten-containing ingredients” on any food products, provided that the statement is truthful and not misleading. However, unless the label of the food including such a statement also bears a gluten-free claim, consumers should not assume that the food meets all FDA requirements for the use of the “gluten-free” claim.

I was never thoroughly impressed with the labeling law, but it was definitely a huge step forward. It was something that was needed to avoid companies labeling anything as gluten free (even if it was a "regular" product--if you want to read a story of this happening, click here). My worry is what happens when companies start working around the rules so that they don't have to comply AND they're not breaking the law. It would be great if we could come together as a united gluten free community to encourage companies to make things as safe as possible while being as straightforward as possible.

I highly recommend using cautious when purchasing an item that does not specifically state gluten-free. Research the product just as you would any product that did not bear any type of gluten claim by checking with the manufacturer and confirming their manufacturing practices and labeling policies. It is definitely always better to be safe than sick!

Cheerios Are Not Gluten-Free

I rarely post something quickly without taking at least a day or two to make sure I'm not overly angry, happy, or any other emotion that could be affecting how rational I'm being about the matter. I'm deciding to make an exception. I've been putting a lot of thought into all of the controversy surrounding Cheerios for the last several months, and I'll admit that I could not stop being angry or frustrated this whole time. I'm now at my tipping point.

I'm sure most people have heard at this point that General Mills has issued a recall on approximately 1.8 million boxes of Original and Honey Nut Cheerios. They were all made in their Lodi, California facility, and according to General Mills, all other boxes meet FDA regulations. If you'd like to read their recall "apology," you can do so on their blog here. If you want additional information, simply google "Cheerios Recall." I guarantee you'll find a plethora of information.

Why does all of this make me angry? There are far too many reasons to address them all, so I'll cover the top ones:

1. General Mills claimed the gluten-free Cheerios were being manufactured in one dedicated gluten-free facility. They're now revealing that there are multiple locations, although I have not yet seen an explanation from General Mills explaining this discrepancy in their story. The closest they've come is the following comment to a post on their blog post. 
   
2. They've claimed their testing methods included testing 12-18 boxes per "lot," yet when asked how the final product passed testing, they admitted they did not test any of the 17 lots included in the recall. The photo below is their response to someone on their Facebook page regarding the testing. 
   
3. Based on the information above, I now know that if you piece together all of their information, they are testing 12-18 boxes/lot. If there are 17 lots in 1.8 million boxes, then there are over 100,000 boxes per lot. Do they really think that testing 12-18 is adequate? That means they are testing less than .018% of the boxes. That would be the case if they are actually testing as often as they said they were. I invite them to tell me if I'm wrong. 
   

I'm not the only one upset about this. I could honestly go on and on, but I won't because simply complaining never fixes anything, so here is my "positive spin." I said previously that I had faith that General Mills could do this. I have MUCH less faith, but I still have faith they can do this. In my opinion, they need to take the following steps:

1. Admit they made a mistake, recall ALL boxes of "gluten-free" Cheerios, and take the time to fix their processes. It does not matter how long this takes, they need to make sure ALL boxes are gluten-free before claiming they are. This includes pulling the commercials that are pulling at the heartstrings of so many gluten-free consumers. 
2. In order to fix their processes, they should use the suggestions recommended by Tricia Thompson of Gluten Free Watchdog. She is still of the opinion that the problems can be fixed, but I get the impression she is losing faith as well. 
3. Find a way to make this up to all of the consumers who got sick because they trusted that a large manufacturer wouldn't lie to them. If General Mills wasn't lying, and they truly believed their processes were creating a gluten-free product, then they need to do A LOT more research prior to re-releasing the product. 

I want to hear your thoughts. I know many people are angry, but I want to hear construtive thoughts. How do we as a gluten-free community help General Mills to fix this mistake or simply admit defeat and go back to not labeling them as gluten-free?

**Update (10/6/15): According to Gluten Free Living magazine, the FDA has received at least one box that tested over the regulated limit of 20 ppm gluten. The level was 43 ppm which is over twice the legal limit. They have not disclosed if this box was part of the recall or not. 

Smoked Salmon & Hummus on Toast or Crackers

Today, I'm starting a new "meals" section of my blog. I know one of the most common questions for those newly diagnosed is "what will I eat?" I've been doing this long enough that eating gluten-free seems second nature to me at this point. Don't get me wrong, we still play the "what's for dinner" game which is by far my least favorite game in the whole wide world. We don't play this game because we only eat gluten free in this house, we play this game because we plan poorly. We aren't lucky enough to have the option of swinging through McDonalds or ordering pizza on the way home, but that is basically the only thing that makes us different from other non-gluten-free families.

We have a lot of "stand-by" meals at this point. They're usually quick and we always know they'll work.

Today for lunch, we had Smoked Salmon & Hummus on Crackers. The first time we made this, it was on a whim. I was shopping at Costco with my husband, and he was supposed to plan a great "date night" dinner. It was Friday, and he'd had a really long week. Meal planning was the last thing on his mind, and he hadn't done it. We were shopping for our "regular" items, and he was hoping to come across something we'd love.

Somehow, we wound up with smoked salmon and hummus in the cart, and it dawned on me that it would taste great on the Udi's bread we also had in the cart if we toasted it. With that, a new stand-by meal was born.

I had a craving for salmon today, so I decided it would be our lunch. This would also be a great opportunity to take a couple pictures and share the idea with my readers. I used Schar Table Crackers, Hannah Hommus, and Honey Smoked Salmon (that I've never seen anywhere but Costco, but I'm unsure of the brand). The three items are pictured below in case you're looking for them yourself. The hommus comes in a bulk box with something like 24 of the little containers pictured below.

Once it's all put together, it looks like this:

Some of the crackers were broken, and I didn't do the greatest job of "staging" it for a great looking picture, but this is what my lunch looked like:

On toast, it seems a bit more like a meal, whereas on crackers, it would make a great simple appetizer at a party. 

I'm going to do my best to post more of our "stand-by" meals. This one is definitely not a "typical" meal, so I thought it would make a great first post to encourage others to "think outside of the box." 

What are your stand-by meals? I'd love to hear ideas from others so we can add to our arsenal. I hope my ideas help you add to yours. 

My 100th Post

Wow! I can't believe I've made it to 100 posts. To go with that, I've finally redone the "look" of my page, and I reorganized it to make things easier to find. What was originally a whim, and a place to post my occasional thoughts seems to have become a somewhat regular part of my life. I want to be a source of positivity in the gluten-free world. I understand how hard it can be, and I understand how easy it can be to get sucked into negativity. I encourage you to avoid the negativity.

A recent video developed by NFCA is making the rounds, and I highly suggest everyone share it. ""Seriously, Celiac" explains in a simple way why it's important for family members of those with celiac disease to get tested. Go ahead and watch it...

The thing that struck a cord the most with me is when they brought up the "c word." Yes, cancer. I don't mention it to scare people, I mention it to encourage people to be proactive. Undiagnosed celiac disease and/or not adhering to a strict gluten-free diet dramatically increase your chances of developing intestinal cancer. 

So my 100th post goes out to all of those who haven't been tested. I understand that it can be incredibly difficult to get doctors to run the test, but what do you have to lose? GO GET TESTED! 

If you don't know what to ask for, check out information from the experts at the University of Chicago Celiac Disease Center.

Worst case scenario? The blood test comes back positive, and you need an endoscopy. If the endoscopy comes back positive, then you go on a gluten-free diet. You don't need medication, you don't need constant follow up appointments, you don't feel sick constantly. You go on a gluten free diet, and it's resolved. 

Have you already been diagnosed with celiac disease? Share this video, and encourage your family members to get tested. 

What's the worst case scenario for them? See above. 

Holy Communion & the Gluten Free Diet

Easter & Christmas are the two times a year that most people go to church even though they don't go the rest of the year. Based on this, it is those two times that I see the most activity of people asking about the safety of different aspects of the gluten-free diet and how it meshes with religion. Communion is quite possibly the most common topic of these questions. (Scroll forward a couple paragraphs if you want to read information rather than a personal story.)

Six years ago, I had been attending a Lutheran church that I liked near my home for several months. I was raised Lutheran, and every church I went to had communion once a month--usually on the 2nd or 3rd Sunday of the month. The first time I went to this church, they served communion, so I made the plan to attend every Sunday except for the Sunday's they served communion so I could avoid the uncomfortableness that went with skipping communion. But then they served it the next Sunday. I assumed one of the two must have been a "special" day I was unaware of due to not going to church for so many years. The third Sunday had me really confused when they served it once again. It was then that I realized they must do it every week. 

Even though it made me uncomfortable, and I wanted to go up to receive communion, I simply sat in my seat while it was being served. Eventually, someone very tactfully inquired as to why I didn't go up after church one Sunday. I explained that I had celiac disease, so I could not consume gluten which meant no communion for me. They quickly assured me that they had gluten-free wafers, so I could take communion. I questioned further, and discovered they put the gluten free wafers in the same cup as the regular wafers, thereby contaminating them. They also served the wine by intinction which means you dip your wafer in the cup of wine, which would contaminate the wine. It was uncomfortable for me, but I explained that I am extremely sensitive, and I couldn't take that risk. 

I continued to simply sit in my seat while communion was served until Easter of that year. At that point, I decided that I would take the risk and take the wafer, but skip the wine. How much could it possibly get contaminated anyway? I felt good about it as I approached the front of the church. I had been instructed to simply say "gluten free" as I approached the pastor so they'd know I needed a gluten free wafer. I watched in horror as the pastor dug to the bottom of the cup for a gluten free wafer. There was no way there wasn't gluten all over it. I must have panicked because in any other circumstances, I would not have consumed something that was almost certainly contaminated. I had no idea what I could do with it, so instead, I put it in my mouth and ate it. I vowed to never take communion if it was a risk again. It was also the first and the last time that I knowingly ate something that would be contaminated. 

That day, I made a large Easter dinner for myself and the guy I was dating because neither of us had family in town. I was scared to death of when the symptoms would hit, but I went forward with the cooking fully aware that I could wind up wasting all of the food. Thankfully, I didn't get sick until after dinner. The guy left shortly after I rushed to the bathroom, and our relationship didn't last much longer after that. I felt incredibly stupid  because I know better, but it was definitely a good lesson to learn. 

Fast forward several years, and after becoming more involved in the church and getting to know the pastors, they have now made accommodations to make the gluten free communion safe for those who need it. They were unaware that cross contamination was a concern. As far as I know, the individual who originally requested gluten free wafers has celiac disease, but they're not at all careful and often "cheat" on the diet. They didn't think it was a concern to mix the wafers, so the church never knew. Now, they have a separate container for the gluten free wafers based on my suggestions. I confirmed they are safe for me to consume even with my other food intolerances/allergies. The individual that puts them in the container makes sure their hands are clean prior to doing so, and instead of a pastor handing the gluten free wafer to communicants, they allow us to pick up the gluten free wafer ourselves so they don't contaminate it after handling the regular wafer. They will eventually figure out a solution for the wine but for now, I just skip it. 

Ener-G Communion Wafers that my church uses.

I've also been to another church where they have the gluten free wafers wrapped in saran wrap on a separate part of the plate where they keep the regular wafers. They allow the individual to pull a gluten free wafer from the plastic. They also do the small individual cups of wine, so I am able to consume the wine there as it is not contaminated. A friends church has 100% gluten free communion so there is no chance of cross contamination (I would love to attend a church like this). 

So now to my point and the education part: 

Different churches and denominations handle communion in different ways. In most Protestant churches (including Lutheran), they are able to use a gluten-free wafer such as the Energ-G Communion Wafer pictured above that my church uses. I've also heard of churches using homemade bread or even crackers as a substitution to ensure they have a gluten free product. 

The problem is the potential for cross contamination at various points including the handling of the wafers, storage of the wafers, distributing of the wafers, contamination of the wine, etc. Those are all things to take into account if you are going to ensure what you are consuming has not been contaminated by gluten. Most churches are open to discussing various aspects to see what they can do to work with you. I've even heard of individuals bringing their own bread and carrying it with them to the front of the church for the pastor to bless it rather than anyone else ever handling it. This should be discussed with the pastor ahead of time as some churches wouldn't allow that as I understand it. 

I don't know from personal experience, but I've heard things are much harder in Catholic Churches. Unfortunately, the wafers pictured above do not meet the requirements for the Catholic Eucharist. According to Catholic Celiac Society:  

Because the Catholic Church states that Communion bread must be made of only wheat and water with "sufficient gluten to attain the confection of bread," the only option for the Catholic celiac has been to receive Communion under the species of wine alone.

The link goes on to say...

The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri, have developed a Communion host that is extremely low in gluten....

According to the Sisters, they were tested to a level of 0.01% gluten. 

There have been several arguments regarding the safety of these "low gluten hosts," and it is up to the individual to decide if they think it is a risk and whether or not it is a risk they are willing to take. 

I encourage you to click on the link above for the Catholic Celiac Society if you are Catholic for additional information as there is a lot of information I simply don't know as I am not Catholic. Protestants have different beliefs than do Catholics, but it is an important part for most Christian denominations and I am thankful every day that I have a safe option. Personally, I didn't realize how much I missed it until I was able to receive communion again. 

Gluten Free Museum

A friend shared a link with me from Buzzfeed and asked me what I thought of it. It referenced a Tumblr post titled Gluten Free Museum which was meant to show how prevalent wheat is in our culture. I didn't really read anything the first time I looked at the link on Buzzfeed, so all I saw were pictures like these:

 Photos courtesy http://glutenimage.tumblr.com/

My first reaction was that it wasn't necessary to remove the majority of the items. I liked the wheat field best because they at least replaced the wheat with grass, but those tools could have been used for the grass too, so removing those made no sense. When it came to pictures like the woman pouring water with the basket of bread, I figured they could have used gluten-free bread. The portrait of Andy Warhol with a cheeseburger could have been on a gluten free bun--or they could have at least left the ketchup in the photo as that should be gluten free although a portrait of a person with a bottle of ketchup would be quite odd. 

I voiced my concern about the fact that items don't cease to exist if everything needs to be gluten free. There are gluten-free breads, cakes, beers, etc, etc, etc. Why did they need to remove these items instead of replace them???

She responded with the following: 

I think it's to make people who don't have to think about gluten every day, every meal look at how important gluten is, how prevalent it is in our culture.

I felt a little foolish. Mrs. Positivity (me, if you weren't sure who I was referring to) had immediately jumped on the defensive. I'll admit I may have taken a different stance if I had actually read what the page said (that was the whole point of it) instead of simply looking at the pretty pictures. I think it's a good reminder to myself (and others) to look at all sides before making any snap decisions.

With that being said, I highly recommend checking out the links below to see all of the photos. 

Tumblr Link

Buzzfeed Link

Dangerous Minds Link

I Missed the Anniversary of My Diagnosis

Apparently after seven years, the anniversary of my diagnosis is less of a big deal, because I was mistaken on the actual date. For some reason, it seemed to have more meaning to me this year. I decided I was going to really take note of March 28th. Unfortunately, when I double checked a calendar, I realized it was March 27th, 2008 when I was diagnosed. I also realized I missed my "blogiversary" (the day I started this blog). That date was March 17th, 2013.

What does all this mean? I'm not really sure, and quite possibly, it means absolutely nothing. Webster's dictionary defines anniversary as:

Yes, the anniversary of my diagnosis was most definitely a special or notable event. I had struggled for over ten years with horrible gastrointestinal issues. I had a million other symptoms that I never realized had anything to do with each other. These included mouth sores, dry flaky & painful skin, achy joints, brain fog, debilitating fatigue, etc, etc, etc. I'm thankful that the doctor I saw that day immediately knew what was wrong, and he happened to be right. My assumption walking into the appointment was that I would have yet another doctor tell me I had IBS and I needed to eat more bread and crackers when my stomach was upset. It was a huge relief that one simple condition could explain everything wrong with me including the major depression I had suffered with for years (I didn't find this out until later).

I was told to remove gluten from my diet, and when I asked how to do that, I was told to go home and look it up on the internet. I must mention that I am amazed at the fact that doctors still give this same advice to patients despite all of the misinformation on the internet and the fact that there is amazingly accurate information from all kinds of reputable celiac disease organizations. I was shocked at the advice, but I went home and did just that. I quickly found a very helpful online forum. I wish that forum were still around so I could go back and see my original post. I'm curious what I said...if I sounded desperate or scared or if I took the stance of overconfidence.

I made a plan to completely remove gluten from my diet that coming Sunday. I have no idea what I ate the rest of that Thursday, or the subsequent Friday or Saturday--I simply remember that I was going grocery shopping the first chance I got which was Sunday. I looked up all of the common ingredients where gluten could hide, and was convinced I was familiar enough to go for it.

I went grocery shopping alone that Sunday. I started in the back aisle as I always do, and I literally went up and down every single aisle until I got about halfway through. In this time, I scanned each item on the shelves, and if I thought it might be gluten free, I picked it up and began reading ingredients. Even those items that didn't seem to have any reason to contain gluten did, such as...

Rice-a-Roni

Twizzlers

Candy

Eventually, it felt like all I was seeing was this on every. single. item.

The picture above does a good job of explaining my experience. I wish I had taken a picture of the contents of my cart (that was long before I had a smartphone, and I doubt if I had a camera in my purse), because although I don't remember what was in there, I know it was very little. By time I got about halfway through the store, I was exhausted and defeated. The one shining note was when I found the "gluten-free section." At the time, this section was about five feet wide (now, it's about 15 feet wide). I skipped the majority of the remaining aisles, and decided I was done.

I had no idea what I was going to eat that week. I was scared that I would never figure it out. As I approached the checkout lanes, my phone rang. It was my boyfriend asking me to grab him milk. I tried to explain in as few words as possible that I simply didn't have it in me to go to the back of the store because I feared if I said too much, I would burst into tears. He was mad, but I went home without milk.

The second I got into my car, I burst into tears. I knew it wasn't the end of the world, but I felt absolutely, completely defeated.

I wound up eating chicken and potatoes for most meals for several months. Eggs made a simple breakfast. I also bought Ensure to supplement my meals to ensure I was getting adequate nutrition. Bananas were also a common snack. I quickly figured out that the Enjoy Life Foods Soft Baked Cookies didn't taste amazing, but they were good, and they were filling enough to eat as a snack.

Seven years later, it's rare that I have anything close to a defeated feeling (although it does happen). It's second nature to find gluten-free products. I've taught myself to cook, and I really enjoy it. I'm glad I did it the way that I did--went 100% immediately--even though it was really hard. Most individuals I've talked to removed the obvious things, and continued doing so until they had removed gluten completely. I see why people do that, but I've seen far too many people continue eating gluten for much longer than necessary because there are one or two items they didn't think to check. When it comes to celiac disease, it's 100% or nothing, so why go through the hassle if you don't have it all removed from your diet anyway?

If I could give any advice to anyone starting out, I would encourage them to figure out things they can eat that should be available prior to leaving for the grocery store. It's also best to stick to the outside of the store where all of the fresh fruits, veggies, meat, and dairy are. Ingredient lists are short or non-existent, which makes things easier.