Appalachia: The Pronunciation Matters

How do you pronounce Appalachia? Do you say Appa-LAY-shuh or do you say Appa-LATCH-uh?

Tomato, tomAHto, let’s call the whole thing off. Or not.

If you are from the Southern Appalachians then you, without a doubt, say Appa-LATCH-uh. If you say Appa-LAY-shuh you are not only identifying the mountain range but you are also announcing to all that you are not from there. You can say a lot in just one word. In my 35 years, I have not met one person from my precious Appalachia that says that they are from Appa-LAY-shuh. Not one.

However, when I travel I run in to folks who argue with me about the pronunciation. Usually the debate ends with, well, “this is the way we say it here.” Does it matter how people say it elsewhere? I feel that the pronunciation of the locals is persuasive in establishing the correct pronunciation. Yet, many folks (probably those holding on to the nonsense stereotypes that all of us are shoeless, toothless, and uneducated) think that they know best, but there are many of us from those mountains who know better.

I was recently introduced to what I believe is the best way to explain why everyone should say “Appa-LATCH-uh.” Southern novelist Sharyn McCrumb says it best . . .

“Appa-LAY-shuh is the pronunciation of condescension, the pronunciation of the imperialists, the people who do not want to be associated with the place and the pronunciation Appa-LATCH-uh means that you are on the side that we trust.” Sharyn McCrumb.

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Gluten-Free Labeling in the United States

Grocery shopping has become challenging for me, because large sections of the grocery are off-limits. I have celiac disease (CD). CD is a systemic autoimmune disorder caused by exposure to gluten in genetically-susceptible people. Gluten is a protein found in wheat, rye, and barley. The immune response activated in celiac disease causes the body to attack gluten as if it is an antigen. Symptoms and other health problems associated with CD include including abdominal pain, bloating, diarrhea, psychiatric disorders, infertility, birth defects, osteoporosis, and life-threatening conditions such as intestinal cancer. According to the University of Chicago Celiac Disease Center, there are approximately 300 recognized symptoms of Celiac Disease. CD affects 1 in 133 people in the U.S. — the number of people in the U.S. with CD could fill 4,400 Boeing 747 jets.

The only treatment for CD is adherence to a gluten-free diet. This means that I must avoid anything that contains or has come in contact with gluten (wheat, barley, or rye). The list of gluten-containing substances I must avoid is not limited to food. People with CD must find cosmetics, beauty products, cleaning supplies, and medications that are gluten-free. Exposure to gluten from these sources can also result in a CD immune response and its accompanying symptoms.

I learned quickly after my diagnosis that the easiest way to eat is to buy fresh food. You know, the food found on the perimeter of the grocery store. I have little use for the guts of the grocery store where all the tasty bagged, boxed, and canned foods live.

When I pick up an organic bunch of kale, I know what is in it. That is not true of food that comes in boxes, bags, and cans. Decoding the ingredients of processed products is tricky. In foods not labeled “gluten-free,” I avoid anything that includes the ingredients “natural flavors,” “artificial flavoring,” or anything else that is vague. Then, I have to spend time Googling or using my gluten-free phone app to see if I can determine the gluten-free status of any other ingredients.

I am that lady standing in the aisle, probably in your way, basket on the floor, can in one hand, and an iphone in the other. Even if the product I am looking at has the words “gluten-free” on the label, I still have to wonder if it is gluten-free. I cannot just sigh with relief and toss it in my basket.

Why?

In the United States, there is no legal definition for the phrase “gluten-free.” That is right; manufacturers can use that phrase as they choose without meeting any established, regulated standards. “Gluten-free” means whatever they say it means as long as, according to the U.S. Food and Drug Administration (FDA), it is not “misleading.” There are instances of food products being sold with “gluten-free” labeling, and some products contain varying amounts of gluten, include “wheat” in the ingredients, and are exposed to gluten in the manufacturing process.

How can this be?

The FDA has failed to accurately define the term “major food allergen,” establish safe gluten thresholds for food products, and meet its legal obligation under the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCP) to create and implement final rules for gluten-free food labeling.

The phrase “major food allergen” under FALCP means “(1) Milk, egg, fish (e.g., bass, flounder, or cod), Crustacean shellfish (e.g. crab, lobster, or shrimp), tree nuts (e.g. almonds, pecans, or walnuts), wheat, peanuts and soybeans. (2) A food ingredient that contains protein derived from a food specified in paragraph (1), except the following: (A) Any highly refined oil derived from a food specified in paragraph (1) and any ingredient derived form such highly refined oil. . . . .” 21 USC 321(qq) (2012). The FALCP requires that manufacturers identify these allergens by their common names (i.e. wheat, milk, or soy) on labeling for easy identification by consumers.

In order for a product to be gluten-free, it must be free of all gluten: wheat, barley, and rye. Unfortunately, the current law does not meet that standard. The definition of major food allergen includes only wheat. It does not include rye and barley, both of which contain gluten. The FDA’s definition of major food allergen must include the term “gluten” or the words “wheat, barley, and rye” to safely protect citizens with CD or other non-celiac gluten sensitivities.

Additionally, the FALCP charged the FDA to have final standards for gluten-free labeling in place by 2008, no later than four years after the enactment of FALCP. In 2007, following up on the mandate from FALCP, the FDA issued a proposed rule “Food Labeling: Gluten-Free Labeling of Foods.” The proposed rule states that a food is gluten-free if the food does not contain any of the following:

  1. an ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains;
  2. an ingredient derived from these grains and that has not been processed to remove gluten;
  3. an ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten; or
  4. 20 ppm or more gluten.

Food Labeling; Gluten-Free Labeling of Foods, 72 Fed. Reg. 2795 (proposed January 23, 2007) (to be codified at 21 CFR Part 101).

The FDA’s notice described the currently-adopted analytical methods for gluten detection as being able to reliably and consistently detect gluten at levels of 20 parts per million or more in a variety of foods. Participation by food manufacturers would be voluntary if they wish to market products as gluten-free. The comment period for these rules passed with no action. No final rules were issued by the FDA.

In 2011, the FDA reopened the comment period on the same proposed regulations for “Food Labeling; Gluten-Free Labeling of Foods.” That comment period closed and, again, no action was taken. No final rules were issued by the FDA regarding the labeling of gluten-free foods.

Over a year later, on Dec. 14, 2012, the FDA issued a notice titled “Request for Comments and Information on Initiating a Risk Assessment for Establishing Food Allergen Thresholds; Establishment of a Docket.” The comment period on the notice will close on Feb. 12, 2013, and an advisory committee meeting of the FDA is scheduled for March 7, 2013 from 8 a.m. to 5 p.m.

Have you ever shopped for a gluten-free cookbook for yourself or a friend? Do you know anyone with CD? It is likely that you do. Please consider supporting them by taking time to help prompt the FDA to do something with the power provided to it by Congress. Commenting on proposed government rules is a way for us to directly impact policy making. Your comments can directly impact and in some cases be included in the FDA’s final rules. Let your voice be heard.

It has been five years since the statutory deadline for final rules on gluten-free labeling, and the FDA has taken no final action. Five years. It is time for the FDA to do something.

This post is featured on The Huffington Post Blog.

Gluten-Free Traveling: Compromises, Ziploc Bags, & Patience

“Ma’am, is this your bag?”

“Yes, ma’am.”

“I will need to run it through the scanner again.”

“Okay, thank you.”

This is the moment when, as an experienced traveler, I self-righteously wonder (to myself – I don’t talk back to TSA agents, please note me thanking her for holding me up) what in the world could she need to see again. My bag is fine. There are no contraband weapons, liquids, or matches in there.

Oh, wait, it is the food. Food, you say?

Yes, food. I bet they think it strange that my carry-on backpack contains gallon-sized Ziploc bags of KIND bars, bananas, apples, Glutino pretzels, tea-bags, cured meat, boiled eggs, and random vegetables.

That is right, due to my gluten house arrest, need to eat every three hours or so, and general distrust of most restaurants, I travel with food. Sometimes large amounts of it. This is not a problem when traveling by car. Obviously, road trips are manageable for traveling with your own kitchen. I can load up the passenger seat, take a cooler, and stop at grocery stores when I need to reload or refresh my stash.

Gluten-free snacks riding shotgun.

Gluten-free snacks riding shotgun.

Flying is a totally different story.

I try to take enough food so that I limit the amount of times I eat at restaurants, this decreases my risk of being exposed to gluten. However, traveling for more than 4 days is a challenge. Food is heavy and I hate to check bags (and I need to be able to take clothes with me), fruit doesn’t keep all that well in a suitcase or backpack, and I can only eat so many nut bars a day.

Make-shift hotel room kitchen.

Make-shift hotel room kitchen.

However, the biggest reason that gluten-free travel hard is that having fun and fabulous (according to me) food-related experiences is a big part of traveling for me.

Some of my most memorable travel experiences have been associated with food. I’ll never forget the tasting menu at Spoon in Kowloon while looking out at the Hong Kong skyline, lunching on tuna and foie gras with my best friend at Le Bernardin in New York City, eating squab at Le Louis XV at the Hotel de Paris in Monte Carlo (while my handbag sat on its own fancy little stool), drinks at the Oak Room in the Plaza Hotel with my Mommy and Sister, or eating giant portions of everything at the Hash House A-Go-Go with my family in Las Vegas. I love food. Food is not just about sustenance. I enjoy sharing food with people who I love about as much as I enjoy anything.

So, as a foodie, I am trying to figure out a way to live and travel the way I want to and still be healthy. In the short time I have been dealing with this it has become clear to me that the life of a foodie with celiac disease is emotionally, socially, and practically frustrating. It is also adventurous and full of compromises.

I don’t want to eat every meal in my hotel room, but I need to be safe. So, I take enough food to cover breakfast and all snacks. If it is a short trip I take breakfast and lunch. My standard buffet includes some sort of nut bar, apples, bananas (on a short jaunt), crackers or chips of some sort, vegetables that keep (green peppers, carrots, etc), and pepperoni (Boar’s Head). On the travel day I take my standard breakfast with me – two boiled eggs and a bag-o-fruit. Ziploc bags are my friend. This compromise allows me to focus on making the restaurant experiences I do get fantastic.

Before the trip I research restaurants at my destination that have gluten-free menus or focus on farm to fork cuisine. These types of restaurants seem to be the easiest to manage because most of the staff understand what I need or are willing to listen and help. You are not going to get that at a chain place. I do not eat at chain restaurants any more. They make me sick, literally. While traveling in Richmond, Virginia recently I had the great fortune to stay near the Urban Farmhouse, a great spot for gluten-free support. I also safely enjoyed dinner at The Blue Goat. Both places feature locally sourced food. They get food.

Next, I find the closest grocery store to my hotel. This is a great way to make sure you have fresh and varied things to eat while on the go. Also, if you are in a super cool place like New York City you can hit a Dean & Deluca and really treat yourself to something you probably can’t find at home. This is also key if the room does not have a refrigerator or the mini-bar fridge is not usable (you know, the kind that has sensors and if I shove something in there and move a bottle I end up getting charged $8.00 for a Coke I won’t drink).

I love hot tea and I like to try all different kinds. Sadly, though, it sometimes is not safe and you can’t always trust what the coffee shop or restaurant is going to sell you. So, I bring my own. I am the person who drives through or walks up to Starbucks and asks for a grande cup of hot water . . . I am not ashamed. Sometimes they charge me a quarter and sometimes they don’t, either way I get my tea. Speaking of water, I could not live without my trusty green Nalgene bottle. I bought this bottle in preparation for Coachella 2012 and it is one of the best things I have ever done. I drink a gallon or more of water a day and the 32 ounce bottle allows me to keep up with that while not being tempted to drink other things. Drinks can contain gluten too (watch out for smoothies, juices, etc). In fact, you will find that airport bars, Starbucks, and other places will fill up the bottle for you if you ask. Yes, it does help the environment but I’d be lying if I said that was part of my plan. It’s a nice incidental benefit, though.

So far, these little compromises with my immune system are working out well. I get to enjoy my trips and have more confidence that I will feel well (even though I know nothing’s 100% safe unless I make it). Also, dealing with fewer restaurants decreases my stress level and allows me to better enjoy my dinner company (rather than fretting about whether the server understands or nervously googling the ingredient, restaurant, or dish on my iPhone). I still have missteps, problems, and get sick but I am learning.

I am growing to appreciate the quote “It is not about perfection, it is about progress” more and more these days.

Home Ownership Lesson #11

The amount of the subdivision annual assessment is directly proportional to the effort expended to treat the subdivision’s streets. In this instance less is not more.

In the mountains, more specifically the holler, there was no “authority” responsible for treating the roads when it snows or is icy. There are no subdivisions back home. You either live on the mountain or near the river. Flat land is at a premium. Usually, Cousin JW would whip out the four-wheeler with a snow blade and clear off what he could. The road to my family’s house is one-lane between a steep hillside and the creek. When traveling it Daddy’s advice was “ah, go on, just go slow and aim for the ditch line, not the creek. You can only slide so far if you are going slow.” So we went.

Here in Indiana, the flattest place on earth, subdivisions are the rule. So, for the first time I am living in one. When I moved into my soul-less garage with three bedrooms in suburbia I knew that I was responsible for my driveway (and that is another lesson altogether). However, I figured that my annual assessment would cover a scraping and little salt for the streets in the subdivision. It, after all, is around $200. That should cover some salt, right?

Wrong.

Two weeks after the last snow fall we still have a few inches of ice on the primary roads of the subdivision. I have slid to a stop at the turn for my street several times. When passing a vehicle going in the opposite direction cars nearly have to stop to do it safely. Not cool.

Icy Road

At the time I bought the house, I specifically remember thinking that the annual assessment for my little starter neighborhood was very reasonable. Some other neighborhoods with more expensive homes had much higher assessments. Now I realize that the more you pay, the more services you receive. I am not sure how this got by me. This was my first time, cut me some slack. Lesson learned.

I regret that I feel a little bitterness when I drive by the grown-up neighborhoods and see their nice clear and dry streets. Sad. However, I am somewhat comforted by the fact that most other folks I have talked to are dealing with the same thing. It seems that my situation is the rule and not the exception. Of course, that does not stop me from being annoyed and indignant about it.

It looks like until upgrade one day, I will be driving slowly through my neighborhood. As you know, you can only slide so far if you are driving slowly.

Indiana Winter: Cold, Flat, & Windy, Part I

Snow is beautiful. I like it.

Indiana Snow

Sadly, though, snow does not come with sixty degree temperatures, dry roads, and warm winds. At least not in Indiana. The day I returned from my holiday break in Virginia it was eighteen degrees and felt like four degrees with twenty mile per hour winds.

These are not my ideal dog walking conditions.

Twice a day I bundle up in layers, strap on my boots, and walk The Queen. She prefers the field and brush behind the subdivision to the sidewalks. This makes for adventures wading through ankle-deep or more snow and enduring 20 mph winds in an open field. Other than the satisfaction of making the dog happy, the only thing that makes these required walks tolerable is the view. The Queen doesn’t mind regular stops for iPhone photography.

Model Dog

Eyeing some fresh deer tracks.

Walking Shoes

The proper form for mole digging.

The proper form for mole digging.

Wading Through the BrushSunset on the trees

The Queen watching the sunset.

The Queen watching the sunset.

Our evening walks offer lovely sunsets. This one is from behind tall weeds.

Our evening walks offer lovely sunsets. This one is from behind the tall weeds.

The view of the Indiana countryside also pretty. Pretty enough to make long commutes fun and slow. Slow? Yes, because you have to stop and take pictures. Seriously. I am that person pulled over on the shoulder, stopped in the middle of the road, and holding the camera up to the windshield or side window while in motion. I highly recommend it to everyone with a camera or smartphone.

It is pretty.

A snowy sunrise near South Whitley, Indiana.

A snowy sunrise near South Whitley, Indiana.

Sunrise over the Eel River.

Sunrise over the Eel River.

An Indiana farmer's lovely old barn.

An Indiana farmer’s lovely old barn.