Article: Gluten-free food labels reviewed by FDA for trust issues

I've been instructing people to know labeling and manufacturing policies for years. Individuals are taking a risk every time they simply rely on an ingredient label to determine whether or not a product is gluten-free. Many individuals forget that wheat is the only ingredient that is required to be clearly disclosed on ingredient labels. The other forms of gluten (barley, rye, and sometimes oats) are not required to be disclosed and can easily be included in ingredients such as natural flavors. Even products that do not actually contain gluten can easily be cross contaminated with various forms of gluten too.

In my opinion, it doesn't take that long to do a little research into the company to find out what their labeling and manufacturing practices are. Are they unsure? If they're unsure, shouldn't you be?

Today, I discovered the article Gluten-free food labels reviewed by FDA for trust issues which is the first time I've seen a study done to prove my point. The article states:

Researchers found that 98.9 percent of the products they tested met the FDA rules for gluten-free labels. This means that the items had less than 20 ppm of gluten. Although this is positive news for people with celiac disease who depend on these labels, there is another aspect that needs to be considered. Food products that were not labeled as gluten-free but did not have obvious sources of the protein in the ingredient list were a problem. They found that 19.4 percent of these items had more than 20 ppm of gluten.

Read that last sentence again:

They found that 19.4 percent of these items had more than 20 ppm of gluten. 

Can I please yell out "I told you so!"???

This is exactly why I do my research. I may not have the money to test every product I consume, but I can definitely be familiar with which brands clearly label all forms of gluten and have good manufacturing practices so that I can simply read their label to know.

One of my biggest pet peeves is when someone asks if a product is gluten-free, and the answer they receive is, "I never react to it" or "I eat it with no problems" or some other ridiculous response that has absolutely no basis in fact or reality (this happens often on gluten-free forums). I see people recommending they contact the manufacturer but other people seem to think they're being ridiculous and wasting their time. Someone will state that they have contacted the manufacturer and were told that it is not gluten free, and someone else will still argue with them that they've never reacted to it, therefore it must be safe.

Ultimately, my opinion is something along the lines of "to each their own," but I would love if I could get the word out there that it isn't worth it to eat items that aren't necessarily safe. Why is the gluten-free community supporting brands such as Kraft even though Kraft states their products that contain "colors, flavors, or spices" may contain gluten (part of the issue may be that Kraft has their old labeling policy on outdated web pages on their various sites). Why don't we speak out to Kraft to get them to change their policy back to their old policy that clearly stated all forms of gluten? Why don't we stop buying their products so that they feel the financial repercussions and have incentive to change? Obviously Kraft is not the only company, but they've done an excellent job of ticking me off so I usually use them as my example. They're also the largest company that I'm aware of that has gone from having a very clear labeling policy to a very unclear labeling policy.

(stepping off soapbox)

Back to the article. Do you know what's in the food you're eating? Do you take the little bit of extra time it takes to confirm the items you're eating? I'll be the first to admit that I am overly careful because I am scared to death of cancer. My luck will be I'll get another kind of cancer, but I will take every step possible to avoid colon cancer by taking every precaution against ingesting gluten.

I strongly urge everyone to contact companies. Show them your appreciation for clearly labeling their products or show them your displeasure at their vague statements or inability to know. Don't be too hard on smaller companies (they have smaller pocket books to have separate prep areas, etc), and never be rude as that will cause companies to think the gluten-free community is full of jerks. Be clear, concise, and polite. Show them we stick together.

Judgy People

So I just sat down with an entire pan of brownies, and proceeded to announce on Facebook that I had sat down with an entire pan of brownies. It hasn't happened in a while, but for some reason, I started preparing myself for someone to tell me I was lying about being on the gluten-free diet because I was eating brownies. This used to happen a lot, especially at my old job. "You're not really on a gluten-free diet, I see you eating cookies all the time. Stop lying." I imagined them feeling this way about me:

Except I wasn't lying. And I felt this way about them...

Granted that was around 6 years ago when no one knew what a gluten-free diet was, but it was still frustrating. My natural tendency toward anxiety makes me fear it happening again. I've received quizzical looks when I eat something where I can I just tell they're questioning how it could possibly be gluten-free. I usually respond with explaining how easy it was to make or some other comment to ensure they understand it is gluten-free and they need to stop questioning it before they even say anything.

Makes me question if I need to clarify my verbiage every time I eat something:
     "This is gluten-free bread."
     "These are gluten-free brownies."
      "I can't wait to eat my gluten-free sandwich."
     "Where did my gluten-free carrots go?

But, at that point, I realize how ridiculous that would be, and I want to wear a t-shirt that says this everyday.

So now, I'm going to continue eating my pan of brownies while I question if I used memes correctly in my blog. Not really my thing, but it fit my snarky mood tonight ;)

p.s. Yesterday was Celiac Awareness Day. September 13th was the day chosen because it is the birthday of Samuel Gee who published the first modern description of Celiac Disease. We wouldn't be where we are today when it comes to research on celiac disease if it weren't for Samuel Gee.

FDA Gluten-Free Labeling Law to Take Effect

August 5, 2014 is a very important date for those who need to adhere to a gluten-free diet. The FDA ruling on products that are labeled gluten-free will go into effect that day.

Am I thankful that something was finally done? Absolutely! Am I going to jump for joy?... Highly unlikely.

It seems some think that this labeling law means that everything that states "gluten-free" on the package will magically become safe. Others think that because they ruled that products must contain less than 20ppm gluten, that items with the words "gluten-free" on the label will suddenly contain 20ppm gluten.

The bottom line in my opinion is that those manufacturers who wanted to jump on the bandwagon with zero regard for whether or not their product is actually gluten-free will finally be held to a standard... if they're reported. The FDA has already stated that it would take several (they haven't stated how many "several" is) complaints about a product for them to pursue testing to determine if the product indeed contains gluten. I can only imagine how many people are going to "get sick" off a product and automatically report it without taking any other factors into account. This could easily take away time that could be spent checking into products that are actually labeled incorrectly, so it makes sense that it would take several complaints.

Best case scenario is manufacturers will become much more careful about ensuring they are being careful about the items they are labeling gluten-free. Worst case scenario...well, I hope there is no worst case scenario. Ultimately, this is a very good thing, and it should have been done a long time ago. Whether you agree with the way it was done or the parameters that were decided upon, etc, it's a step forward.

French Toast Bake (Random Style)

We are currently trying to empty out our basement freezer so we can defrost it. This has resulted in a plethora of "interesting" meals. The goal is to move everything from the basement freezer up to the regular freezer today. This may or may not result in us putting another turkey in the refrigerator even though we already have one thawing that we will be making tomorrow. It all depends on space available.

Today, we are using up 2 pints of frozen blueberries and a loaf of cinnamon raisin bread. It's definitely one of my prouder meals in this whole process, although I have no idea if it will work as I wasn't even remotely prepared to make it. We've been having french toast every Saturday morning for a few weeks because there was a sale on Udi's Cinnamon Raisin bread about 6 months ago, and we bought A LOT. At $3.50 a loaf, it was hard to pass it up. The ends of the loaves don't work well for french toast, so we've been throwing them into a "discard" bag so that we don't have a million bags with only ends in them.

Last week, this bag became full enough to constitute an entire loaf, so I decided it was time to do something with it. I pondered making some sort of sweet croutons, but I wasn't sure what I would put them on. I knew I needed to do something where they were cut into pieces, and I knew the oven would probably be necessary. Beyond that, I wasn't sure.

I had pondered trying out a french toast bake (otherwise known as french toast casserole) because it seemed simple enough to try. I started without checking any recipes, and then thought twice and looked at a few recipes to get a general idea of how many eggs and other ingredients I should use.

I wound up using the following:
1 loaf of bread (all ends--some people call them the heel or crust pieces)
8 eggs
Coconut milk (I just sort of poured)

I broke the bread into bite size pieces and tossed it into a 9x9 glass pan that I had sprayed with olive oil. I then beat the eggs and coconut milk and poured it over the top. Some of the pieces seemed really dry, so I tried to mix everything around but it wasn't an easy process because the pan was very full.

I decided to let it sit for a little while while I worked on the topping. The topping included:
1/2 cup gluten-free flour
Light brown sugar that I eyeballed at about 1/2 cup
Gluten/Dairy/Soy Free butter that I eye balled at a few tablespoons
Nutmeg--I just kinda shook a bunch on. Maybe 3/4 teaspoon.
Cinnamon--I just kinda shook that on too--probably also about 3/4 teaspoon

I mixed all of the topping ingredients together, and then put it in a baggie so I could mash everything together to ensure the butter was mixed thoroughly. Then I put it back in the bowl and mixed it with a fork so that it was crumbly.

I still wasn't happy with the pan I was using, so I took out a 9x13 pan and sprayed that with olive oil. I then dumped the contents of the original pan into the 9x13 pan. I then scowled at myself for the amount of dishes I was using/wasting because I would need to clean more. At least my experiment had a better chance of working.

I then took about two pints of frozen blueberries we picked last year and poured that over the top, and then sprinkled the topping on and threw it in the oven at 350 degrees. I had no idea how long to bake it, so I set the timer at 30 minutes, and came to my computer to check what the recipes I had looked at suggested. It seemed most thought 45-60 minutes was best depending on how "wet" you wanted the final product.

The timer just went off for the 30 minutes, and our kitchen smells AMAZING. My husband has no idea what I'm working on, so I had him walk into the kitchen, take a deep breath through his nose, and then walk back out. He thinks I'm baking cookies.

I also took a quick picture and wished I had taken pictures throughout the process:

French Toast Bake in Oven (pardon our dirty oven)

(Fast forward an hour)
It ended up taking one hour to bake. The finished product was great. It definitely tasted more like a dessert than a breakfast, but I'm good with that occasionally.

Here are two photos of the finished product:

French Toast Bake finished product. 

French Toast Bake plated. 

I feel like there are a million things I could have done better, but I'm happy with what I got. It definitely could have looked prettier, and an actual recipe may have perfected the taste, but I don't think it's too bad for randomly coming up with it.

CeliAction Study

I've been mulling this one over for a while. Even as I write this, I'm not entirely sure where to start. I guess I'll start with the basics. Alvine Pharmaceuticals, Inc is sponsoring a study on an investigational drug for Celiac Disease. If you'd like to read more directly from the company, you can go to the company website here.

I'll admit I haven't done a large amount of research on this study, but I guess my intent is to give my opinion on studies in general, so I'd prefer to not know too many specifics.

Years ago, I was a member of an online forum when a member posted a question for each of us to vote as to whether or not we would ever consume gluten again if we were "cured." I had been diagnosed about a year or two prior, and I was still flying high on how much better I felt. I think I responded that I wouldn't change a thing--the gluten-free diet was a far superior way to live even if I could take a pill to be cured. A few hours later, I second guessed my answer and decided it would be nice to be able to go out to eat without being a pain to the wait staff with all my questions.

Fast forward to present day, and I'm not sure what I would do if I were offered a pharmaceutical cure. I'm not entirely sure how much I would trust that something would work. My biggest fear is relying on a pill that claimed to prevent any damage, but finding out later that it was simply preventing any symptoms of consuming gluten but the damage was still being done. I've already dealt with colon polyps, and I have a huge fear of getting cancer.

I always questioned when a drug would be introduced. Many individuals believe celiac disease hasn't received the necessary attention from medical professionals because the treatment is "natural." There is no profit in diagnosing celiac disease because there is pill to prescribe. There are no pharmaceutical reps sending kickbacks to the doctors, therefore there is no incentive to know anything about it.

So what is the purpose of this study? This is what the website says:

The CeliAction Study is a clinical research study evaluating an investigational medication for celiac disease. The study will explore whether the study medication is able to improve the damage in the lining of the intestine caused by even the smallest traces of gluten.

The study will also evaluate whether the investigational medication improves any symptoms of celiac disease compared to a placebo. While enrolled in the study, you will be asked to maintain the gluten-free diet you are currently on.

In the interest of full disclosure, I question A LOT about this study. These are my own personal thoughts on the matter:

• It seems to me that this study will require a HUGE time commitment from the participants in order to truly determine if the medication is working. 
• I question how they will determine if the medication is working if the individuals are supposed to continue on a gluten-free diet. No gluten=no damage=no study. 
• I question if participants will take unnecessary risks. I saw a claim from someone who was supposedly part of the study stating that she had traveled out of the country and because she was having such good luck with eating out and not getting sick, she decided to try eating an entire croissant. She claims she didn't get sick. The pill isn't meant for the actual consumption of gluten, but how many people will risk it anyway?

How could something like this benefit those with celiac disease? My thought is that by introducing a medication, pharmaceutical companies will give doctors an incentive to diagnose it. At this point, such a small percentage of individuals with celiac disease are diagnosed that it is absolutely ridiculous. The more individuals diagnosed, the more food options there will be (hopefully this would also help to eliminate the "fad" part of the gluten-free diet).

I hear more and more about this study every day. I've even seen a commercial on network television. I'm hoping with all of the exposure, they are able to obtain a large enough group of participants to determine the safety of this pill.

In a perfect world, I believe doctors would be better educated on celiac disease, and they could give better advice to their patients. Most doctors have no idea what to tell their patients who are diagnosed and simply refer them to the internet. Is this pill necessary because people aren't responding to the diet or because they're not following the diet correctly?

I Think I Was Glutened :/

Ugh...

It's been years since I was last glutened. It's been so long that I don't recall the symptoms very well, which is why I'm not even sure. I also know that my reaction seemed to be ever evolving, so I'm not even sure what my reaction is any longer.

It used to be that within 24 hours of ingestion, I would have one horrifying visit to the bathroom. I then experienced several hours of being incredibly lethargic, intense brain fog, etc. For the next two weeks, I would become ill every time I ate something. That was my reaction in a nutshell. It seemed the more I ingested, the quicker I reacted, whereas the less I ingested, the longer the time period until I reacted.

So why do I think I was glutened? Last week, after eating out, I experienced a horrifying trip to the bathroom the next morning. I assumed it was because I wasn't used to greasy food. I'm still not sure, but the last week has been full of far too many urgent trips to the bathroom. They don't necessarily happen immediately after eating like they used to, but they're definitely very frequent.

Last night was the worst. I needed to run to the grocery store, and when I pulled into the parking lot, I felt that familiar twinge in my stomach. I sat in the car for a moment trying to decide if I needed to go straight to the restroom or if I would be safe to attempt to grab the five items I needed. I finally left the safety of my car and determined I could attempt to do my shopping and then head to the restroom if necessary.

I didn't even have one item in my cart when I decided I had probably made the wrong decision, but I took a deep breath and pressed on. The fear of knowing the restrooms were on the opposite side of the store didn't help to calm my nerves. I wanted to grab a few extra items, but I determined it was a better idea to grab just the necessities. As I headed to the checkout lanes, I did a quick calculation of how long it would take me to get through the line and whether or not I could make it through without crapping my pants before making it to the restrooms if my stomach started spasming while I was in line.

I made it through the line and decided I'd prefer to get home rather than using a grocery store restroom. As soon as I left my parking spot, I wondered if it was a mistake. I was only a few miles away from home, so I hoped I could make it. I quickly called my husband to ask him to unlock the door so I could run inside immediately to the bathroom....but he didn't answer. As I approached a McDonalds, I questioned if it was a better idea to stop there as I didn't really have any options once I passed it. The spasms were getting so bad that I felt like I was going to pass out, so I felt it was safer to stop.

As I walked towards the back, I saw a large sign on the mens room door: "Restrooms are for paying customers only." I foolishly hoped the same sign would not be on the womens door, but I was wrong. I was past the point of no return, so I pushed through the door past the sign, and slipped into a stall.

I left as quickly as I could, avoiding eye contact with the staff, who I assume hadn't even noticed me walk in because it was probably a bunch of teenagers working. I'm a natural rule follower, and I felt bad for "breaking the rules" as well as "blowing up the bathroom" in a sense.

I drove home slightly ashamed that I had resorted to emergency trips at McDonalds after so many years. I used to know where every single restroom was on every single route I could ever need to take. I no longer know those things because it's unnecessary information at this point, and I'm thankful for that.

I'm still overly cautious about everything I put in my mouth, but I think I got slightly sloppy for the sake of convenience. At this point, I'll never know if it was gluten or if it was something else that caused my stomach to suddenly get completely wonky. Either way, it's a good reminder that I need to remain vigilant so that I can continue enjoying life rather than fearing when my next emergency bathroom trip will be.

Terror in the Breakroom

When I was diagnosed with celiac disease, I worked in a large call center. The break rooms were disgusting. I didn't dare keep my food in the fridge unless absolutely necessary because I worried about someone contaminating it or stealing it. It grossed me out even without the gluten thing to worry about. I wound up eating Dinty Moore beef stew or Hormel Compleats microwavable meals (they had 2 gluten-free options at the time) most days because they were shelf stable.

I literally used long rolls of paper towel to completely wrap my food to avoid any chance of anything flying into my food while it was in the microwave. I also set layers of paper towels under my food so the paper towels wrapped around my food weren't actually touching the microwave. While my food cooked, I scrubbed a spot at a table so I could sit. I didn't care if I looked crazy. There were some pretty odd ducks there that made my behavior seem normal in comparison.

After that job, I worked in the gluten-free industry for several years. Everyone I worked with was also on a gluten-free diet. It was amazing. We shared a microwave and sink with another non-gluten free company, but they were very careful about keeping things clean. I'll say it again. It was amazing.

I started a new job a couple months ago, and when they offered me the job, one of my first three questions was concerning the break room. I would only have half an hour for lunch, which wasn't enough time to get home to eat, so I needed to make sure I planned for eating. I was incredibly happy to find out they had 2 refrigerators, 2 microwaves and a stove. Perfect!

I still remember my first day going to the break room for lunch. I inspected the microwave as best I could without making it obvious what I was doing. It looked clean, but I ensured my food was covered securely anyway. I then sat down at a table with my food and scanned the table with trepidation for any sign of crumbs. It looked clean enough, but I would have felt much better about wiping it down. I really didn't want to be the "crazy new girl," so I chose to be careful about not touching the table so I wouldn't accidentally pick up a crumb and have it fall off into my food.

My household is 100% gluten free, so I rarely have to worry about my food being contaminated due to my surroundings. It's unlikely for something to happen, but I don't feel it's too much effort to take precautions.

Several weeks after starting, it occurred to me that I face the break room with at least a small amount of terror every. single. day. I've learned that I can quickly brush off the table with my hand without looking too weird. I'd prefer to get a towel and actually clean the table, but I'm not sure it's actually worth the effort. There are less than 100 employees, and many of them know I'm on a gluten-free diet, but I still prefer not to be the topic of conversation because they don't understand why I'm doing it and they think I'm weird.

Do I really face terror in the break room? No.

Do I think it's necessary to make fun of myself for the anxiety I have towards gluten? Whenever I can.