01/30/2013 11:06 am ET Updated Apr 01, 2013

Gluten-Free Travel

TSA Agent: "Ma'am, is this your bag?"

Me: "Yes, ma'am."

TSA Agent: "I will need to run it through the scanner again."

Me: "Ok, thank you."

This is the moment when I self-righteously wonder (to myself, of course, 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 the agents thought it strange that my carry-on backpack contained two gallon-sized Zip-loc bags of KIND bars, bananas, apples, Glutino pretzels, tea-bags, cured meat, boiled eggs and random vegetables.

I have celiac disease. The only treatment for celiac disease, a genetic autoimmune disease, is the strict adherence to a gluten-free diet.

Due to my strict gluten diet, I need to eat every three hours or so, and with a 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.

Flying is a totally different story. Airplanes create challenges.

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 four days is a challenge. Food is heavy and I hate to check bags, fruit doesn't keep all that well in a suitcase or backpack, and I can only eat so many nut bars a day.

However, the biggest reason that gluten-free travel is hard is that having fun and fabulous 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 Bernadin 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 mother 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 for me. It is a source of great interest and fun for me. I enjoy sharing food with people that 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 travel buffet includes an assorted box of 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. Zip-lock 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 are the easiest to manage because the staff are often trained to understand my needs, including cross-contamination issues. You won't get that at a chain place. I do not eat at chain restaurants any more. They make me sick, literally.

Next, I find the closest grocery store or bodega 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 your hotel 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 percent safe unless I make it). Also, dealing with fewer restaurants decreases my stress level and allows me to truly 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.