Posts tagged ‘cross-contamination’
I LOVE pizza – cold pizza for breakfast, hot, gooey, cheesy pizza with thick or thin crusts and toppings of all kinds: pesto, pepperoni, olives, onion, even anchovies. So when I was diagnosed with celiac disease back in 1992, when very few gluten-free products existed, I concluded my love affair with pizza was pretty much over. Making gluten-free pizza was a chore I could handle, but it just wasn’t the same. Eating pizza out of the box and sipping an ice cold beer while watching a movie, and hanging with the family or friends seemed impossible or too depressing. During a pity party, I even told my husband, Dave, my last request before I died was pizza delivered to my death bed with a cold brew as my last meal. (What’s one last jolt of poison when your about to take your last breath anyway?) I’m so glad gluten-free has come so far that I can pick a more extravagant last meal….maybe chocolate croissants. Never in my lifetime, did I expect to live to experience gluten-free pizza so accessible and tasty.
Recently, I was honored to speak at the International Pizza Expo in Las Vegas on behalf of the National Foundation for Celiac Awareness (NFCA). Gluten-free pizza is a HOT trend and operators across the country want to know what it takes to include gluten-free as an option for their customers, so I was thrilled to be asked to attend. Over 7,000 pizza operators attend this show annually to taste the latest, greatest ingredients, find new equipment, and attend educational sessions to learn how to make their business more successful. The energy at this show is over the top and the events are show stoppers. These operators are serious competitors, too. The contests happening right on the “All Pizza, All-of-the-Time Show Floor” included Bake Offs, Freestyle Acrobatic Dough Tossing, Pizza Challenges, and Demonstrations for pizzas, salads, and beer brewing. What an amazing experience.
My educational session, “How Pizzerias Can Serve a Gluten-Free Pie” included 3 panelists. As moderator and speaker, I provided education about serving diners with gluten-related disorders, the importance of training and safe preparation. My panelists, GREAT Kitchens grads (a training course from NFCA on safe gluten-free food preparation) Adam and Debbie Goldberg from Fresh Brothers, LA area, and Willy Olunds, from Willy O’s in Michigan, gave the attendees real life experience in serving gluten-free pizza. These experts gave different perspectives since Fresh Brothers has 8 locations and Willy O’s is an independent operation.
Willy invited me to tag along during his pizza competition in the non-traditional category. (No gluten-free category yet, but maybe next year.) According to Willy and his wife, Carla, this is highly irregular to allow non-participants in the competition area. I felt honored and so impressed with the intense passion each competitor brought to their pie including Willy. His unique corn-based crust and decadent ingredients made for a pretty impressive entry.
Other GREAT experiences included hanging out with the staff at Venice Bakery. (Their booth was amazing and so was the pizza!) I also sat in the front row and watched Iron Chef Redemption challenger Elizabeth Falkner demonstrate kale salad (crispy, fresh, and blanched kale) and actually met her after the demo. She’s really cool. I had some time to check out the exhibitors, so I said “hi” to old friends like Joel Schut from RW Bakers, Pamela and Alison from Pamela’s, and the DeIorio’s team. Best of all I made a new friend, Denise San Filippo (a fellow gluten-free gal) from Schar. Denise and I hit the strip one night and had a fabulous gluten-free dinner at Mon Ami Gabi in the Paris Hotel. From our window, we could see the Eiffel Tower and watch the Bellagio fountain show. (Sometimes this job is grueling!) Our waitress was well-educated about allergens and gluten which gave us confidence in our restaurant choice especially when she answered all of our probing questions correctly. She even brought us toasted gluten-free bread and warm olives for our starter. Denise had the scallops and I tried the Lemon Chicken with shallow Pom Frites. (Shallow means fried separately in a pan not a deep fryer.) It was delicious, especially the fried potatoes.
With every expo and conference I attend, I have the opportunity to meet new people and can’t help but feel ecstatic over the progress we’re making. 20 years ago, I thought I would never eat pizza again. Now, there are people seeking information on how to make both delicious and safe gluten-free pizza. And, to be able to be a part of that is a GREAT feeling.
I don’t know how many of you are like me but when I travel, I pack most of my food with me so that I know exactly what I am eating at all times. That usually means one suitcase full of food including my handy Magic Bullet for my morning gluten-free shake. But a few weeks ago, I was off to South Florida with the National Foundation for Celiac Awareness (NFCA) team and there was no room for all of my food. This made me a little nervous, but I knew that I could manage this trip because of all the additional knowledge I’ve gained from working with NFCA. Plus, everyone I would be meeting would be gluten-free, so how hard could it be?
The flight down wasn’t too bad since I had armed myself with ThinkThin bars (there’s always 2 in my bag) and bottled water. By the time I checked into the hotel, it was so late there was no need to eat. The next morning, I took another bar and water with me for breakfast and was off to visit a member of our Gluten-Free South Florida Group. We spent time talking and sharing our stories of diagnosis- guess who else travels with food? Isn’t it a great feeling when you realize you are not alone in your pursuit of gluten-free food and desire not to be cross-contaminated? It’s like a big hug from the world telling you it will all be okay.
Dinner worked out well that evening at Seasons 52, a restaurant that had a gluten-free menu. Even though they are a chain restaurant, I went with another member of the South Florida Gluten-Free Group who has eaten there many times and felt safe in her recommendation. Plus, I was starving!
The following day was literally a GREAT day. Alice Bast, NFCA’s Founder, was invited to speak at a country club in Gulfstream, Florida. They were trained by NFCA’s Gluten-Free Resource Education and Awareness Training (GREAT) Kitchens program, so the entire meal was gluten-free and I felt confident the chefs understood safe gluten-free food preparation. If any of you have heard Alice speak, you know that she is dynamic in her presentation and her passion for celiac and gluten-sensitivity radiates from her inner core. The crowd of more than 100 was in tune with gluten-free and more than half knew about celiac disease or are personally affected by this autoimmune disorder. They all had such amazing questions and were engaged throughout the evening. Most of the guests were also shocked at how delicious the gluten-free meal was and the flour-less chocolate torte was exquisite! It was so great to be surrounded by people who understood the need for safe (and tasty!) gluten-free food.
My final day, I visited with a doctor who has non-celiac gluten sensitivity. We met at his home where he made me a fabulous gluten-free grilled cheese on Udi’s bread. Oh, and truth- we split a gluten-free chocolate bar. After talking for three hours about all things gluten-free and NFCA, I had to go or I would have made myself at home for dinner.
Now what is it that I want you to take away from my trip south? I survived and thrived without a full suitcase of food. We have an amazing and inspirational community that I am fortunate to meet on my travels and in the Philadelphia region. All of you teach me something new in our conversations and emails. I leave tonight for overseas…with just 3 bags of gluten-free food. I’m not scared, I’m confident. But I wouldn’t be if I hadn’t found NFCA and the amazing gluten-free community. Thank you for giving me my wings back.
I’ve become quite an expert at traveling. As Director of Gluten-Free Industry Initiatives for the National Foundation for Celiac Awareness (NFCA), I’ve visited over 25 cities and worked in a dozen or more states within three years (my latest NFCA trip was to Atlanta, Georgia two weeks ago for the KeHE Summer Selling Show). I can maneuver through airport security with ease and efficiency, flipping off shoes and jackets and pulling out bags of liquids and my laptop in seconds. And since I have celiac disease, traveling means “always being prepared and aware” so I’ve created a list of “must-haves” snacks, which airports have safe choices and how to find gluten-free friendly and not so friendly restaurants anywhere in the country. (I use the Find Me Gluten-Free app to sort out potential eateries. This is a dining locator not an endorsement of gluten-free options. You still need to investigate by reading the reviews, making a call and asking questions.) I’ve also had to be proactive and advocate for myself and others with gluten-related disorders when it comes to attending business dinners, conferences and events by identifying my dietary needs on conference registration forms, plus notifying event coordinators, hotel hospitality and general managers.
This is all part of trip preparation. It takes a bit more time but I always feel it’s important to be an advocate for not only myself but for all people with gluten-related disorders. And while I’m traveling around the country, I feel it is my job and honor to be the voice for people with celiac disease everywhere by spreading education, awareness and understanding. (You may not want to sit next to me on a plane…you’ll get an earful.) I have learned that if we don’t politely ask, people may not think our dietary needs are necessary. If we don’t carefully express our needs, many may not think there are any. If we don’t calmly mention the mistake, serves and restaurants will never know there is a problem. If we don’t ask if they have completed NFCA’s GREAT Kitchens gluten-free training program, restaurant operators, chefs and servers may not think they need it. But, if we remain patient and plant the seed, the growth will come.
Here is my list of must-have gluten-free snacks to take with me on the go:
- KIND bars
- Gluten-free crackers (If you keep these in a tin, they’re perfect for packing in a suitcase)
- Individual servings of hummus and nut butter
- Jerky sticks
- Cheese sticks
- Mix nuts, dried fruit, gluten-free pretzels or chocolate chips
- Go Picnic boxes (Not everything by Go Picnic is gluten-free, so be sure to check before purchasing)
I’m always looking for new travel-friendly gluten-free foods. Comment below with your go-to travel snack to give me some fresh ideas!
Last week, I received an email from Benny Solomon, the founder of celiac and gluten-free resource website called OnTrackCeliac. The website is still in its infancy, but the goal is to include restaurant listings, product recommendations and other tools for living gluten-free. Nothing out of the ordinary, but here’s what caught my attention: Benny is only 14 years old.
After reading Benny’s email, I just had to find out how a teenager decided to shelve some of his social time and spend it developing a gluten-free resource.
NFCA: What inspired you to start OnTrackCeliac?
Benny Solomon: I was diagnosed with celiac disease in late 2009, and immediately switched to a completely gluten-free diet. Within days, I noticed that many people knew what eating gluten-free was, but had no knowledge of cross-contamination. I did not feel comfortable eating out and not knowing what was happening in the restaurant’s kitchen. I realized that most places did not fully understand celiac disease.
For about a year and a half, I refused to go to more than about four different restaurants that I felt comfortable in, simply because I didn’t know which ones I could trust. It was at this time that I realized that those with celiac needed a place to go to be sure that there was no need to worry.
Many websites have huge, outdated lists of restaurants with gluten-free menus. If you were to go to about half of the restaurants on those lists, you would find that most of the staff has no familiarity with celiac. People with celiac disease needed a place to find gluten-free options that were reliable and where they did not have to worry about cross-contamination. In February of 2011, I started OnTrackCeliac to satisfy this need.
NFCA: Why did you decide to do a restaurant and food finder?
BS: I wanted to work with restaurants and foods since they are the base of starting a gluten-free diet. My plan was to develop more resources around these two categories over time.
This was not my first time making a website or app, but it was the first time that I seriously took on a technology-related task. For a few years I worked on a few iPhone games, and later I ran a small website that featured “the best videos on YouTube.” OnTrackCeliac truly felt like an idea where I could apply my computer experience to something I am passionate about.
NFCA: How do you choose the restaurants that you feature?
BS: My policy is that any restaurant that is safe for people with celiac disease should be listed on OnTrackCeliac. I don’t exclude any restaurants for quality of the food, or any other reasons. I try to provide as many options for restaurants as possible, as there are very few that have a strong knowledge of celiac. Although the main focus is on gluten-free safety, I will be starting a new star system, so that restaurants that have exceptional food and go above and beyond expectations will be recognized.
NFCA: How do you create your list of gluten-free foods on the website?
BS: When creating a list of gluten-free foods, I generally start by exploring the company’s website. I try and ask myself if the company looks reliable, and if they are promoting gluten-free foods. If they actively publish a list of gluten-free foods, that becomes a strong indicator of the company’s reliability. If not, I generally call companies to find out if they have a list of gluten-free foods, but do not publish it online.
The company must show significant knowledge to pass the test and make it onto the site, and if they do not have any apparent efforts for showing which products have gluten and which do not, they do not make the cut.
NFCA: How do you juggle this project with school and other activities?
BS: Working OnTrackCeliac development into my schedule is certainly difficult. I generally don’t work on the site every day (after homework is done); instead, I find that I work best when a large chunk of time is available. On a break from school, for example, I sometimes sit down and work on the website for 3-4 hours a day. I do give OnTrackCeliac a quick check every day though, just to make sure nothing has gone wrong, and that everything is working smoothly.
NFCA: Some people get discouraged about having to live gluten-free. You seem to have a passion for it. How do you stay so positive?
BS: I have mixed feelings towards having celiac disease. At times, I like having it, because it gives me something that I feel is unique to me in the way that I deal with it. At other times, I do experience frustration, such as on trips and when I go to a restaurant at a last minute’s notice. The way that I stay so positive is by knowing that OnTrackCeliac helps other people. By encouraging people to stay informed about celiac, we can only encourage progress for the future.
For the first year I worried about having celiac, but realized that worrying wasn’t getting me anywhere. By educating others, I hope that someday celiac will not be a burden at all on my lifestyle, and I am motivated to teach others to have the same outlook on eating gluten-free.
NFCA: What advice do you have for teens who feel tempted to cheat on their gluten-free diet?
BS: To any teens with celiac that want to cheat, I would say it’s simply not worth it. After having spent the first part of my life eating gluten without knowledge of celiac, I can assure anyone that the best substitutes for gluten-free are just as good as regular food. The trick is you have to find the best (I cannot stress that enough) brands. For example, there are hundreds of gluten-free breads out there, but in my opinion, only about two of the brands taste like “normal.”
Cheating might not initially seem like a big deal, but the long-term consequences are extremely serious. There is nothing to gain from eating gluten. Set a goal for yourself to not eat gluten, and reward yourself when you reach points along the timeline (but not with eating gluten!). If you ever need advice on the best foods, check out OnTrackCeliac’s food page!
NFCA: Is OnTrackCeliac something you’d like to turn into a career?
BS: At this point in development, I hope for OnTrackCeliac to become even more of a resource for people with celiac disease. I would like my career to be somewhere along the lines of what my website strives to accomplish, but I just can’t predict what lies ahead. I hope that OnTrackCeliac has a long future, and I want people to have the mindset that it encourages: To embrace celiac, find reliable ways to live your gluten-free life, and educate others.
Last February, I received a random phone call on my NFCA line. It was a mother, Jenny Tierney, who seemed pretty devastated. Her teenage twin daughters had just been diagnosed with celiac disease. (All of the staff at NFCA answer all kinds of calls from newly diagnosed patients and others in the food industry or healthcare field. It’s a great opportunity to walk them through the resources available at CeliacCentral.org.)
After a review of NFCA’s resources, Jenny felt a bit better and she agreed that she could handle adapting to the gluten-free diet at home and working with the school, but her biggest fear was sending the girls off to camp. The girls had gone every year since they were very young to this amazing camp for most of the summer. The solution was easy. I shared information about GREAT Schools, Colleges, and Camps and suggested she have the camp contact me.
A month later, I received an email from a college girlfriend Sara, who lives near Kansas City. Sara told me about her neighbor, Kathy Dix. Kathy and Sara had been chatting, and the topic of gluten-free foods came up. Sara is always telling people about her gluten-free college pal and my job with NFCA. She thinks it’s amazing how 20 years ago when I was diagnosed with celiac disease, it was considered a rare disease and food availability was scarce. Over the years, Sara has referred me to anyone interested in anything about gluten-free. She also cuts out articles related to celiac disease and gluten-free from newspapers and magazines and sends them with a note saying, “Reminded me of you,” or “Hey isn’t this cool?” or “Wow, this gluten-free stuff is everywhere.” Gotta love her for it.
Well, it just so happens that Kathy needed gluten-free training for her camp. She’s the director of a girl’s camp in upper Minnesota called Camp Ogichi Daa Kwe. A conference call was set up to talk to the staff to understand their needs and how NFCA’s GREAT Camps program could help. On the call, I perceived the compassion and love the staff seemed to have for their mission at the camp, and how vested they were in giving all their campers a complete experience. They were ready to sign up and complete the course.
Toward the end of the conversation, they revealed that their interest in learning about gluten-free protocol for the camp staff had to do with twins that returned every year. These twins had been diagnosed with celiac disease recently, and Camp Ogichi Daa Kwe wanted to live up to its “Strong Spirited” name and ease the girls’ mother’s concerns about sending them to camp while they were still learning the gluten-free diet. Kathy’s goal was to ensure that these young women would continue their “growth in self esteem, deep seeded friendships, and memories to last a lifetime,” and the first step in achieving this goal was becoming GREAT trained, allowing the girls to continue their summer tradition of attending Camp Ogichi Daa Kwe.
Small world, isn’t it?
Researchers from the Celiac Center at Beth Israel Deaconess Medical Center in Boston have published a new paper on the gluten challenge. Late last week NFCA covered the recent publication in our Research News Feed – you can check out the post here.
Many are familiar with the gluten challenge as it relates to the current hot topic (or dare I say, trend?) of self-diagnosis and the implications that come along with going gluten-free before being tested for celiac disease. People often equate the words “gluten challenge” with the sentiment, “Why would I put my body through torture if I know what unpleasant symptoms to expect?” I can certainly understand this perspective as I tend to suffer from a range of unwelcome digestive disturbances when gluten has a found a way into my diet.
But, I thought I’d take this opportunity to also share my personal views on why I believe an official diagnosis of celiac disease is so crucial, both for an individual’s health and the greater field of gluten-related disorders at large. I’ve actually covered this topic before, in the early days of Celiac Central: Bits and Bites. As you can see, I feel strongly about this particular subject.
1. Expert guidance!
Celiac disease is an autoimmune disorder requiring expert management and follow-up by a knowledgeable physician. Clinicians can closely monitor a patient with celiac disease to ensure that their celiac antibodies (blood work) return to normal and can keep an eye out for unrelenting symptoms that may indicate a need for additional testing or require supplementary treatment. A dietitian skilled in the gluten-free diet can ensure that individuals with celiac disease are meeting all of their nutritional requirements and can also assist in weight management, a challenge that in recent years researchers have identified as an important topic to discuss in celiac disease management. Registered dietitians or nutritionists can also use their expertise to determine if a patient is being accidentally exposed to gluten through routes such as misinterpreted ingredient labels or cross-contamination in the home or when dining out. (Did you know that gluten exposure is the most common cause of non-responsive celiac disease?) It’s important that people understand that the gluten-free diet is complicated and requires guidance. Relying on the internet and library books alone is no replacement for a healthcare provider.
2. More expert guidance.
What’s more, if celiac disease is not properly treated or managed, a person is at risk for developing other health complications involving their bone and reproductive health, as well as some cancers. Of course, there is also the chance that a person who has implemented a gluten-free diet because they think celiac disease is the culprit, may actually not have a gluten-related disorder at all and instead have a different underlying (and untreated) condition. Just as celiac disease can mimic the symptoms of other conditions, so too can other conditions mimic the symptoms of celiac disease. For more information on this, see this handout from Quest Diagnostics: Why Not Just Go Gluten-Free?
3. It applies to your family, too.
Further, celiac disease is genetic, which means that it often runs in families. Persons who have a first or second-degree relative (i.e. parents, siblings, aunts, uncles, cousins, grandparents) diagnosed with celiac disease need to be tested for the autoimmune condition as well. It’s particularly important that family members of people with celiac disease understand that they don’t have to have the same symptoms as their relative, or in fact, any at all, in order to have celiac disease.
4. We need collaboration.
Research in the field of celiac disease and other gluten-related disorders has grown exponentially in the last decade regarding subject matters such as disease signs and symptoms and the role of the gluten-free diet. However, one puzzle piece that remains missing is the number of undiagnosed versus diagnosed patients. Sure, many estimates abound but let’s face it – these are only estimates. It is difficult to ensure that persons are accurately diagnosed and managed if they are treating a disease on their own. In order to successfully advance treatment and testing, we need the assistance of the patient population.
It’s great to see people taking responsibility for their health and implementing what they believe to be a healthy lifestyle, but I think that it’s just as important that patients recognize the important role medical providers play in the management of their health. If your current physician has refused to test you for celiac disease, don’t stop there. You can share NFCA’s free Primary Care CME with them or seek out an experienced clinician. Ask support group members for a referral and read local articles about celiac disease to see which healthcare providers are considered experts in your area.
If I haven’t convinced you to consider an official diagnosis, then I at least ask you to understand the reality of having to undergo a gluten challenge if and when you decide to consult with your physician. In other words, know what you’re getting into before you go gluten-free on your own.
I welcome an improved gluten challenge like the approach Dr. Leffler and his colleagues have studied. I expect that this new approach will bring about improved patient compliance and willingness to undergo a gluten challenge, and hope that other clinicians begin implementing this approach too.
[Summer is quickly approaching, and your schedule is probably packed with barbecues, picnics and other social gatherings. We asked NFCA volunteer Annsley Klehr, owner of Gluten Freedoms, a gluten-free consulting company, to share her tips for managing those awkward moments when you're gluten-free at a gluten-filled party.]
A month or two ago I received an email from a neighbor asking me for a recipe for a gluten-free flourless chocolate cake. I willingly obliged, noting in my email that I would be happy to advise her on certain brands and kitchen procedures to avoid cross-contamination. She thanked me and that was that.
Fast forward several weeks, my family and I are invited to this neighbor’s daughter’s birthday party. I have already briefed my daughter that she will not be able to eat the desserts there, so we brought a piece of chocolate for her. We walk in the door to the rich aroma of Mediterranean style appetizers such as hummus, baba ganoush, chips, veggies, etc. I happily allowed my daughter a few corn chips and veggies.
When it came time for dessert, I realized that my neighbor had asked me for the gluten-free flourless chocolate cake recipe so that she could make it for my daughter and myself. I knew her household wasn’t gluten-free, so I could not be sure how she prepared the cake, what ingredients she used or if there was a risk of cross-contamination. The host offered the cake (which was touching gluten-containing desserts) to me in front of all the guests, saying, “I made this especially for you. It’s gluten-free.” Then came the ice cream cones filled with chocolate mousse – both gluten-containing and gluten-free versions. My first reaction was an overwhelming appreciation for such thoughtfulness, and then anxiety.
How could I tell her how much I appreciated all of this food and then NOT eat it? There was nothing I could say to her but “Thank you.”
I felt so embarrassed by the whole situation I wanted to sink through the floor. I wasn’t even worried about my 3 year-old daughter because no one would be looking at her for social graces. I was sitting on the couch surrounded by guests, my daughter floating around the room and my husband at my feet. I was handed a piece of chocolate cake and the gluten-free cone and I found myself profusely thanking my host for all of her efforts as my heart raced. I knew I couldn’t eat any of it. The risk of cross-contamination and the thought of a gluten attack were too high. All of the sudden, a hand reached out in front of me, freeing my hand of my cone. I looked up and all I could see was a mass of curls; it was my husband. He readily bit into the cone without uttering a word. I new I’d married him for a reason. By eating the cake for me, my husband relieved me of a potentially uncomfortable situation! (The chocolate cake I could conceal in a napkin in my hand).
These situations will always happen, and people living gluten-free have to be prepared. Here are a few tips to help you navigate awkward social situations:
1. Call Ahead
Call your host or hostess and let them know that you plan on attending, and that you will either come with your own supply of food or carefully vet all of their ingredients and thoroughly explain cooking procedures to avoid cross-contamination. If you have a child attending the party, ask the host for the menu in advance so that you can plan to bring gluten-free substitutes. If the party is being catered, call the catering company and speak with them directly.
2. Stash a Snack
Sometimes it may feel awkward to say anything or have a special plate. In that case, make sure that you grab something to eat before or after the party and always have a snack, like a nut bar or piece of fruit in your bag.
3. Be Your Gracious Self
As awkward as it may feel, saying “Please” and “Thank you” for foods you can’t eat are still greatly appreciated. People have gone out of their way to make you feel comfortable, so in return, try to make them feel comfortable, too. Parties are not the time to educate your hosts, so if you are presented with something that you can’t eat, accept it and express your thanks, then find a time to subtly dispose it or hand off to a friend.
4. Bring a Decoy
Have someone or something you can swiftly pass your food off to without anyone noticing. I often alert a friend going to the party with me of situations like these and ask if that friend might kindly take my portion so as not to offend anyone.
5. Redirect Attention
If you’re looking to avoid drawing attention to what you’re eating or not eating at a party, then always try to have a drink or plate in your hand. I find that having something on my plate helps to avoid questions and makes it easier to decline other foods.
Don’t let your anxiety prevent you from enjoying a party. Keep to these few tips and you’ll have a good time no matter what situations you encounter!
- Annsley Klehr
[You learned how to cook gluten-free. You found local restaurants that serve gluten-free. Now, you have to travel gluten-free. Heading to an unfamiliar area can be intimidating, but fear not! Frequent flier Gluten-Free Mike has 5 tips to prepare you for any upcoming trip.]
Let’s face it, we’ve all had that moment of initial panic when we first received our celiac diagnosis. Speaking from personal experience, I know I was completely caught off guard and quite honestly had not even heard of celiac disease before I actually found out I had it. Sounds familiar, right?
Well, that was more than 10 years ago when the gluten-free landscape and celiac awareness were indeed at a very different place than they are today. Fast forward to today and awareness of and catering to celiacs has come a very long way, and perhaps nowhere is this more apparent than in the travel and hospitality industry.
I have been globe trekking since before I could walk, and when first diagnosed thought that celiac disease would throw a wrench into my love of travel. To be honest, it did at first. My diagnosis came at a time when there were few good gluten-free products and they were difficult to source. Most restaurants had no clue what I was talking about and going abroad seemed to only magnify the confusion. I slowly but surely got back on the proverbial horse when I realized that celiac need not be limiting and that I needed to take control of the disease and live my life on my terms.
Over the years I have developed a few tips and tricks particularly when it comes to traveling with celiac disease, and I am happy to share some of them with you here:
1. All Airlines Are Not Created Equal.
If you are going to be flying, particularly long-haul international, check out a few carriers’ websites to see whether or not they offer a gluten-free meal option – some even provide samples of what they’ll include. This will depend on length of flight and class of service, but most airlines will have a gluten-free option if your flight has meal service. Yes, some airlines do gluten-free better than others, and I have had some amazing gluten-free meals over the years – some even included a fresh gluten-free roll – can you imagine? Will the gluten-free meal knock your socks off? Likely not, but at least it is safe option to tide you over until you land.
The most important tip I can give when flying is as soon as you board, ask a flight attendant if your meal has been loaded BEFORE departure. Oftentimes if there is a problem they can deal with it while on the ground vs. not being able to do anything at 35,000 feet. On a recent flight, my gluten-free meal was even noted right on my boarding pass – nice! Another trick I use is when flying in a premium cabin to check out the airline’s online menus for the route. Most airlines have monthly menus for specific routes and these can be accessed online. I scan the menu to see if any of the “regular” options will work for me and more often than not there is something I can have. I have also seen more and more gluten-free snack item choices making their way on board shorter flights, which is always good to see.
2. Do Your Homework.
This sounds like a given, but just getting a feel for the area you’ll be visiting can help you enjoy your vacation (or business trip) a bit more. I like to go online and look at the immediate vicinity around where I’ll be staying. Where is the nearest supermarket? What dining options are around? Is there a local celiac group site that gives tips and advice for the area? If a restaurant piques your interest, check out their menu or give them a ring to discuss whether they will be able to accommodate your needs. There are even an increasing number of hotel chains that now that cater to a host of dietary restrictions and food allergic travelers. The more leg work you do before departure, the less stress you’ll have at your destination.
3. Speak the Language.
Okay, this might be easier said than done but there is an easy solution if you find yourself in a country where you do not speak the language. Printable food allergy cards that you can either buy or download for free online. My recent trip to Peru had me a bit leery as I do not speak Spanish. Before I left, I printed out and laminated a few double-sided cards that had both a celiac disease explanation and shellfish allergy notation that called out what I could and could not eat in detail. Let me tell you that these were a lifesaver because each time I presented them, the server read them and could immediately tell me what would work for me on their menu. If I was in a location where I thought the cross-contamination from shellfish could be an issue, the servers actually brought the cards back to the kitchen for the chef and kitchen staff to read. I had zero issues or reactions on my most recent journey, which was the first time I have brought such cards along with me – and best of all they were available free online.
4. Pack Accordingly.
No, I am not talking about what clothes to bring – though that is sometimes equally as important. When I travel, be it by car, train, plane, or horseback (okay, that last one is a bit of poetic license) I always take along what I call my Gluten-Free Contingency Pack. Depending on the length of my journey, I always carry a bag of nibbles so that I have something to nosh on if I find myself delayed or not having any gluten-free options readily available while en route.
So what’s in my contingency pack? Well, I am glad you asked. I typically include a few gluten-free snack items like chips, pretzels, cookies, or snack mix along with a couple meal replacement bars or snack bars. Okay, and maybe there might be a chocolate bar (or two) in there. A just-add-water type noodle snack or dry soup is also great to toss in your carry-on and I typically will carry those for ultra long-haul flights of 14 or more hours. I also like to toss a few snack items in my checked bag so I can have a snack at my hotel without having to pop-out to a supermarket right away.
5. Be Flexible.
Flexibility is really key. You might find yourself in a situation with limited knowledge of or availability of a host of gluten-free options. Don’t panic. Regardless of the situation (and some of mine have been less than ideal) I have never gone hungry while on the road. Sure, you might not always be able to have exactly what you want, but there will be something – trust me. I have always been amazed at how far people are willing to go to accommodate my dietary needs while on the road. Also, a little education goes a long way. I cannot count how many times I had someone on the road say “I had no idea that contained gluten” or “I have heard of celiac, but never knew why you couldn’t eat gluten.” Just think, the more people become exposed to celiac disease, the less bumpy the road ahead becomes for all of us.
Perhaps the most important thing I have learned since my diagnosis is that I will not let being celiac define who I am or dictate what I can and cannot do, and you shouldn’t either. Life does in fact continue and it’s for the better because I now know why I would get sick after certain meals and in retrospect, pre-diagnosis was actually more limiting than I have found celiac to be.
It’s a great big gluten-free world out there so please, get out there and enjoy it. Oh, and there will be hiccups along the way – it’s just inevitable – but when they happen, look at them as learning experiences and not roadblocks. They happen to all of us, gluten-free or not.
- Michael De Cicco-Butz
One of NFCA’s most valuable resources is our Getting Started Guide – a 24-page booklet filled with information for those newly diagnosed with celiac disease or non-celiac gluten sensitivity. It lists gluten-free alternatives, sources of hidden gluten, tips for cooking and dining out, and contact information for support groups and celiac disease centers.
When I started at NFCA, I didn’t know much about celiac disease. Here are 5 things I learned thanks to the Getting Started Guide.
1. Take baby steps.
The gluten-free diet can seem overwhelming, especially when you try to jump in with an overly complex recipe. Instead, start with a few basics. As the Guide says:
“A first and simple step is to look for dishes that need very little customization, perhaps just the substitution of one gluten-free ingredient for one that is not gluten-free. For example, make macaroni and cheese or baked ziti with rice, corn, or lentil pasta, or prepare enchiladas with corn tortillas instead of the wheat flour variety.”
2. Don’t skip out on your doctor.
Follow-up visits are critical to ensure you are healing and not accidentally ingesting gluten.
“To make sure your gluten-free diet is successful, schedule annual exams and take the celiac antibody test when directed by your doctor. If your blood test comes back normal, it will confirm that you are maintaining a completely gluten-free diet,” the Guide says.
3. Cup for Cup conversions.
Baking with gluten-free flours isn’t as easy as using a box mix (which, thankfully, include gluten-free versions). Fortunately, the Getting Started Guide has a cheat sheet. Page 12 lists conversions for replacing wheat flour with a gluten-free alternative. For example, use ½ cup of almond flour for every 1 cup of wheat flour. Sorghum flour, on the other hand, swaps 1-for-1.
4. Those “weird” health issues could be related to celiac.
Dental enamel defects. Pale mouth sores. Fatigue. They don’t always get the spotlight, but they are signs of celiac disease. The Guide has an abbreviated list of symptoms (there are more than 300, after all). You may find yourself having an “A-ha” moment after reading them over.
5. Generic and brand name drugs can differ.
Yes, but how is this relevant. Well, there are things called excipients (binders) used in medications that can sometimes contain gluten. In some cases, a brand-name drug may be gluten-free, but its generic counterpart may not be. So, it’s important to always check with the manufacturer to ensure a medication is gluten-free. Find more details in the Getting Started Guide.
Where can you find this Getting Started Guide? It’s available for download 24/7 on NFCA’s Printable Guides page. Just scroll to the section called Restoring Health. In fact, all of the Printable Guides you find on that page can be helpful in your gluten-free lifestyle – and they’re all free!
Is there a topic you’d like us to cover in a Printable Guide? Leave your suggestions in the comments below.
[When you first go gluten-free, you typically focus on the obvious foods like bread and pasta. But it's often hidden sources of gluten like soy sauce that throw you off course. We asked Shirley Braden of gluten free easily to share her tips on avoiding hidden gluten. Here they are, organized in 5 categories to help you stay safe!]
When The National Foundation for Celiac Awareness asked me to participate in this year’s May Celiac Awareness campaign, of course I said yes as I’m a huge fan of the NFCA and all its efforts. I said yes even though initially the subject matter didn’t excite me. Hidden sources of gluten. Yes, it’s a very important topic, but it’s one that’s not very exciting on the surface (no pun intended). However, not knowing where gluten can be hidden can give you major anxiety. There’s nothing as unfortunate as going merrily along and suddenly getting “glutened”!
The following are some frequent sources of hidden gluten … or sometimes not so much sources of hidden gluten as “overlooked”gluten. Note that the Food Allergen Labeling and Consumer Protection Act went into effect on January 2006, which ensured that wheat (as one of the eight major food allergens) must always be shown on applicable food product labels—either in the listing of ingredients themselves or after the ingredients list in a “CONTAINS:” statement. (Read more here.)
1. Grab-and-Go Foods
Candies ~ While there are many candies that are gluten free, many more contain gluten. Most folks are not surprised to learn that candies that contain cookie ingredients contain gluten, but they are surprised to learn that others like licorice (or similar; e.g., Twizzlers) contain wheat. Many other candies contain gluten in the form of barley for flavoring. Read labels and be wary of accepting or taking candy with no packaging.
Chips ~ Flavored potato chips (e.g., barbecued flavor, sour cream and onion) can contain gluten. Some new varieties of “whole grain” or “multi-grain” chips may also contain gluten. Don’t dip the chip without knowing that it’s gluten free!
“Formed” Products~ I asked my son for his input on products that contain hidden gluten and he said, “Anything that is mixed and then molded or shaped probably has gluten in it.” Great point. He talked about specific candies and some brands of beef jerky (for the latter, some brands also contain gluten via soy sauce for flavoring).
Broth ~ The unsafe gluten ingredient that can be present in commercially prepared chicken broth, beef broth, or stock is usually wheat. Therefore, wheat will be shown on the ingredients label. Similarly, some chicken bouillon can contain gluten. Read the ingredients label.
Condiments~ There are many condiments that are gluten free, but sometimes gluten is used as a stabilizer and thickener, so read labels and do your due diligence. If you share a household with gluten consumers, it is imperative that separate condiments be maintained. It’s unrealistic to think that the members of your household who eat gluten will know or remember not to contaminate the mayo jar when they stick a knife inside the jar, spread mayo on bread, and then realize that they need more mayo. That same knife will go back in the mayo jar and the jar suddenly become cross contaminated and a source of gluten. Similarly, there are many who will touch the ketchup container right to the gluten-containing bun, bread, seasoned fries, etc. and the ketchup container then becomes a source of hidden gluten.
Kitchen Equipment ~ Toasters used for gluten-full bread, old pans and baking sheets, cutting boards, baking stones, and wooden utensils can all be sources of hidden gluten. (A black light that would show gluten would be so very handy, don’t you think?)
3. Eating Out
The opportunities for cross contamination are endless in restaurants, and even a gluten-free menu doesn’t guarantee a gluten-free meal. Every single individual must be fully trained on serving the gluten-free patron and keeping gluten-free ingredients/dishes free of gluten contamination. One poorly trained individual and/or one misstep is all it takes to provide an unsafe meal. But let’s focus instead on foods and dishes that may have hidden gluten in restaurants. The risk can also be greater when eating out because we don’t have ready access to ingredients listings.
Beverages~ This category includes non-alcoholic and alcoholic liquid refreshments. I was with a group of bloggers, most of whom were gluten free, at a food blogger conference a while back. During a break between sessions, we were sampling some of the vendors’ wares. We immediately asked if the beverages were gluten free. The answer was “Yes, these are.” What we didn’t pick up on was that there was an emphasis on the “these” and a specialized sweep of the company reps’ hands, indicating that only particular flavors of the brand were gluten free. We discovered this info after continuing to reading ingredients labels as we sipped.
That gluten can be present in tea also surprises folks. Barley is the usual source. Holiday and specialty teas are more frequent sources of gluten than basic teas. Special scrutiny should be paid to teas with name that include “gingerbread” and “sugar cookie,” as gluten is used to achieve that baked good taste. Similarly, flavored coffees can sometimes contain gluten.
The biggest concern for alcoholic beverages typically is beer. Unless it is made from special gluten-free ingredients and/or processed to be gluten free, beer is off limits. I’ve seen this news come as a shock to gluten-free newbies. The health care professional who diagnosed them had warned them about pasta, bread, crackers and baked goods, but had forgotten to mention beer.
Dressings, Marinades, Sauces, and Soups ~ I was very surprised to learn that an area restaurant’s homemade Caesar dressing contained soy sauce (which, of course, contained wheat). If I had not notified my waiter of my dining needs and he had not been well informed on the restaurant menu and ingredients, I might have been “glutened.” Others have found that soy sauce has been used in all types of dishes, and in decidedly non-Asian fare. Soy sauce is often used in marinades, and beer may sometimes be used as well. Sauces and soups are often thickened with wheat-based flour versus naturally gluten-free thickeners such as cornstarch, potato starch, and tapioca starch/flour.
Egg Dishes ~ Some well-known chain restaurants add flour or pancake batter to scrambled eggs and omelets. One should always ask if either have been added when ordering egg dishes–even in the finest restaurants–just to be safe.
Salad ~ Of course, salad on its own is gluten free … lettuces and other salad greens, carrots, onions, tomatoes and the like are gluten free. However, many restaurants will make salad in a humongous bowl and then the wait staff will serve individual salads from that bowl. If the restaurant uses croutons in that bowl, you must ask for your salad to be made fresh, separately without croutons. (Note: If ever you receive a salad with croutons, or say a bread stick on top, hold on to it until the server replaces it, as restaurant staff have been known to simply pick out croutons or remove the bread stick.)
Water Used in Food Preparation~ Are you ordering steamed seafood? Does the restaurant use beer to steam to add special taste to its seafood offerings? If so, either you must abstain, or you must ask if the chef will steam your seafood in plain water in a separate, clean pot. (Do not assume on the latter.) Are you ordering steamed veggies for healthier fare? Be sure the restaurant doesn’t use the same water that it has used to boil its pasta in to also steam its veggies. This happens more often than you would think and not asking that question has gotten me “glutened” at least once.
4. Non-Food Sources
Please don’t stop your vigilance at food sources; consider the following.
Art Supplies~ Numerous art supplies—like mainstream brands of play dough and finger paint—contain gluten. Heidi at Adventures of a Gluten-Free Mom has an excellent post on gluten-free art supplies here. As Heidi says, little ones are notorious for putting their hands in their mouths.
Makeup and Lotions ~ Choose lipstick and facial lotions (or any product that could wind up in your mouth) that are gluten free. Deciphering the ingredients on these labels is not easy, so select products that have simple ingredients like coconut oil and shea butter or shop from a product line that is entirely gluten free.
Medications and Supplements~ Gluten is also sometimes present in medications. I’m talking about prescription and over-the-counter drugs, and vitamins and supplements. Alice Bast, founder and president of NFCA, states “When you look at the word gluten, think glue. It is often used as a binder.” NFCA is in the midst of a two-part study on Gluten in Medications, which was funded by a $50,000 grant from the FDA.
Pet Food~ Unless you are purchasing grain-free pet food, it most likely does contain gluten. Make sure to wash your hands after handling any pet food. This issue may even be more of a concern for the gluten-free child touching the pet’s food dish and then his/her mouth, kissing the family pet, etc.
5. The Gluten-Free Watchdog
Those are just a few sources for hidden gluten, but I’d like to share another component of the hidden gluten equation. As most of you know, there are no current standards for a “gluten-free” label in place in the U.S. at this time. The Food and Drug Administration’s proposed standard from a few years ago remains at less than 20 parts per million (ppm). Final passage of this amount has not occurred; the latest data from the open comment period held months ago is still being evaluated. We also know that we are seeing more and more products labeled “gluten free.” Does that mean such products really are gluten free?
That’s what the Gluten Free Watchdog program is finding out. Founded and maintained by Tricia Thompson (The Gluten-Free Dietitian), the Gluten Free Watchdog program tests “gluten-free” products weekly.
The most important thing to know is that while most of the products that the Gluten Free Watchdog has tested are gluten free to less than 5 ppm gluten, a handful of products have tested well above 20 ppm gluten. These findings point to the scariest sources of hidden gluten of all—the ones with “gluten free” labels that you believe are safe. Please take a moment to check out the Gluten Free Watchdog Alerts page to see which products have tested positive for gluten at 20 ppm or above. I have not seen this information shared enough with the gluten-free public and folks are still consuming these products and getting ill. (Note: Only subscribers get the product testing reports immediately with the specific testing results.)
Finally, do your best to “stay safe out there.” For staying safe and living gluten free easily (gfe), I’m a huge proponent of real food that is naturally gluten free. There is no hidden gluten in the products that are ready to eat “as is” (obviously, cooking will be needed in some cases). Think meat, seafood, fruit, vegetables, and dairy. As they come in their natural forms (without processing or “additives”), these foods are gluten free all day long!
- Shirley Braden