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Tips for Traveling with Celiac Disease

As my two year Celiac diagnosis approaches, I have had time to reflect on how my life has changed in the last two years. When I was first diagnosed, I was naive, and thought I could perhaps cheat and enjoy a bit of gluten now and then. After my first month gluten free, I quickly came to realize that when I gave my body reprieve from gluten and then accidentally re-introduced it, my body now had violent reactions. I went from having no visible signs of a gluten allergy, to being a vomit comit if so much as a crumb of gluten made it into my body. There was no playing around, this was serious, and I could never ever have another bite of gluten in my life. That was really hard to come to terms with. Really hard. I LOVE food. If I won the lottery, I would enroll in culinary school, and spend my days perfecting new foods. Food was a huge part of my life, and a big chunk of that was taken away. I could no longer to go restaurants and eat anything I wanted. I couldn’t have canapes at cocktail parties, and I couldn’t enjoy most of my first post diagnosis Christmas dinner. (No turkey if it has been stuffed, no stuffing, no rolls, no gravy, no casseroles, and no pie.)

About 6 months post diagnosis, I had my worst gluten reaction to date. I ate a bunless hamburger that I purchased from my local butcher shop, and spent 6 excruciating hours vomiting. It was so bad, my body was in uncontrollable convulsions, and I was vomiting blood (later learned that I tore my esophagus.) That was scary, and something I never want to relive.

Two weeks after that episode I was scheduled to travel to Las Vegas. It was my first trip as a Celiac sufferer, and I was petrified of not having anything safe to eat, or worse yet getting sick away from home. That trip taught me a lot, and since then I have traveled to New York City, Copenhagen Denmark, and Cuba

Here are my secrets to traveling with Celiac Disease without missing out or getting sick.

RESEARCH, RESEARCH, RESEARCH

I cannot stress this enough. Before traveling anywhere I do a ton of research on safe places to eat. When we traveled to Las Vegas we stayed at Mandalay Bay. Before traveling I made a list of places with known gluten free options, or full GF menus, and where they were located. For instance, I knew that there was a pizza place in Mandalay Bay called Slice of Vegas that had a whole GF menu including gluten free pizza, pasta and buns. I also knew that Border Grill has gluten free menu options, and as does Verandah. All this was available without leaving the hotel. Some other places with Gluten Free options nearby were Nine Fine Irishmen, In & Out Burger, PF Changs, Mon Ami Gabi & Chipotle. I even marked out these places on a map, and carried it with me.

How did I learn about all these restaurants? I hit up Trip Advisor first, searching for things like “Las Vegas Gluten Free”. If I didn’t find enough results, I would often ask a new question to the Trip Advisor forums. I also started Googling, and checking out the menus online of the local restaurants. The next step is calling or emailing restaurants that do not have things marked on their menu. You will soon have a list of safe spots to eat. If you are traveling to a place that does not speak your native language, always print and carry around these Celiac travel cards. They are available in a multitude of languages and they explain the disease, and what you can and cannot eat. They were a life saver in Cuba where most servers speak English but may not have an understanding of what gluten is.

STAYING WITH FRIENDS OR FAMILY? EDUCATE THEM.

When I traveled to Denmark, we were staying and visiting with family. The last time I saw any of that side of the family I was still eating gluten, and they didn’t even know about my diagnosis. My Mom emailed the Danish family ahead of time and told them about the seriousness of my Celiac, and my special diet. When we arrived in Denmark I was absolutely blown away with my family. I cannot express enough how amazing they were. They all knew about my diet, and had went above and beyond to ensure I had things to eat. The spouse of one of my cousins is a chef, and everything he made, he made a gluten free option for me. From gluten free sausages and sauces, to toast points with foie gras. It was spectacular, and incredibly moving how much effort they put in for me.

Foix Gras on Gluten Free Toast Point — Foie Gras on Gluten Free Toast Point W/ chutney? OMG

Some family friends even found a bakery called Lagkegehuset that carried fresh daily gluten free bread, and they came over bearing loaves. It was incredible. By far the most delicious gluten free bread I have ever had. I was able to have my bread and cheese for breakfast and lunch the same as my Danish hosts. My family was also amazing for conversing to wait staff in restaurants about what I could and couldn’t eat. The above mentioned chef even saved me at dinner one night, as he suspected the sauce on my plate contained gluten. He told me not to eat it, and went and found the chef at the hotel, and questioned the ingredients. It turned out that there was in fact gluten in the sauce, and they made me a new dish. I am so thankful to my family for taking care of me, and giving me such an amazing trip.

Fresh Seafood from a restaurant in Hundested Denmark

PACK SOME SNACKS.

Even with all the research in the world, there will still be situations where there is nothing you can eat. Carry around some protein bars and other non-perishable snacks for such occasions. When you arrive in a new city, try to find a grocery store or somewhere you can pick up a few things to have on hand for breakfasts and snacks. Fresh fruit and cheeses are perfect for keeping in your hotel fridge.

BRING YOUR OWN MEAL ON THE PLANE.

I have tried calling airlines and requesting gluten free meals to no avail. My last flight I requested a gluten free meal, and this is what I got: piece of papaya and grapefruit, and a roll. While better than nothing (and luckily the fruit was separate from the roll, so I was still able to eat the fruit) it was a far cry from a complete meal or actually gluten free. Luckily I travel with fruit and nut bars, and was able to get something filling in my tummy. Airport lounges don’t often have much better fare. Fruit cups, cheese sticks and loose fruit are the best of the airport slog, but can be costly. On the way to the airport for the Denmark trip, we actually stopped at Chipotle and purchased burrito bowls, with the salsa & sour creme on the side . We took them through airport security (with the liquids in their little containers packed in my liquids ziplock bag). I half expected airport security may find problems with my burrito bowl, but they let me in, and in turn I had a wonderful meal on the plane. That kept me fed until we landed in Copenhagen.

KNOW WHAT FOODS ARE INHERENTLY GLUTEN FREE.

I hate being difficult. I do not like being the person at the restaurant demanding my meal be made special. Even prior to Celiac diagnosis, I was not the person who asked for their meal to be made specially. After diagnosis, I became even more aware of that, and fearful that servers would think I was being a gluten avoider for fad diet reasons, not that I actually needed to eat this way for my health. I had a total fear of server eye roll, and less than careful handling of my food.

As such, before asking for anything to be made gluten free, I will scan the menu for the most plausible gluten free item. A cheese plate sans crackers? Perfect. Salad? Yes! Grilled steak w/ veg? All right! All viable options. I will then broach my waiter with a version of the following “I’m so sorry to bother you, but I have Celiac Disease and I cannot eat any gluten. Do you know if the _______ has gluten in it? Can you check with the kitchen? Thank you so much for your help!” I have found this is MUCH easier (and less eye rolling) than doing the whole “is there anything on your menu that’s gluten free?”

Cider is (thankfully!) Naturally Gluten Free.

While traveling to Cuba, I knew that Cuban rice and beans were never made with gluten, so this was always a safe meal even at the buffet. If you are staying at an all inclusive resort, the omelet bar will be your best friend for breakfast, and the grill stations will keep you fed with meat and fish at dinner. For dessert, I often hit up the cheese plates with fresh fruit.

CHOOSE SMALLER OR FANCIER RESTAURANTS & AVOID THE CHAINS (unless they are chain restaurants that offer gluten free menus that is)

I find that smaller or fancier restaurants have a more hands on approach. The chef will know exactly what’s in the food they are cooking, and the wait staff may know as well. Heck, I have even had chefs tell me about the farms where the produce came from. People that love and care about food are usually pretty happy to accommodate your allergies. Whereas the kid working at the chain restaurant has no idea what gluten is, or whats in the meal he’s taken from the freezer to the deep fryer to your plate. Find people who are passionate about food and make things from scratch, and they will usually make you a meal to die for. The best is when chefs ask me if they can just make me a custom meal, which I adore, and will let them go wild. As long as it wont make me sick, I will try anything!

With several trips under my belt, I am now 100% confident while traveling and maintaining my gluten free diet. As the world becomes more educated about Celiac disease and Gluten Free dining, I think things are going to get even better.

What are your Gluten Free Travel Tips?

Gluten Free Baking

Since being diagnosed with celiac disease I have pretty much stopped baking. There is a reason for this, Gluten free baked goods tend to be described with the following adjectives: bland, dense, hard, flavorless, cardboardesque, and a few four lettered words my Mother would be upset if I used.

The other thing about gluten free baked goods or breads is that they are so full of sugar, that my nutritionist told me I could either have a slice of gluten free bread or a chocolate bar. The sugar levels were pretty much the same. Gah!

If it comes to bread or chocolate, I am going to always pick chocolate over a piece of cardboard toast.

As such, I tend to avoid most gluten free substitutes, especially ones I bake at home. I would just rather spend my calories and sugar on more delicious things that happen to be gluten free, rather than trying to replace my beloved wheat based products from pre-diagnosis. (Face it, you just cannot replace a fresh baguette or a croissant. Heck, you cant even replace a Tim Hortons bagel with cream cheese.) So instead of trying to replace, my gluten free diet tends to be delicious things that happen to be gluten free. For instance, for dessert I will have cheese with fruit compotes, nuts and seeds and a glass of port. Not exactly cake, but it’s damn good.

However there are some holidays where nostalgia has me wishing for baked goods of my past. Like Thanksgiving, and my old friend pumpkin pie. Nothing replaces pumpkin pie.

This weekend was Thanksgiving here in Canada, and we spent it up at the cottage. My Mom was in charge of desserts, and she showed up with two products I haven’t tried before. Pillsbury gluten free pie dough, and gluten free chocolate chip cookie dough (also Pillsbury). Both were premade in a container (not frozen). Truthfully I was pretty suspect of the products. I’m not a fan of processed foods, and I don’t really want to consume a weeks worth of sugar in one cookie. However, it was Thanksgiving and that is a time for indulgence if I’ve ever seen one AND frankly this girl would kill for a pumpkin pie.

Mom got to making the pumpkin pie filling while I rolled out the pie dough. Instead of rolling it out on a surface with flour, the directions asked you to roll it between parchment paper. As we were at the cottage and without fancy baking accoutrements, we used cling film instead. It worked perfectly fine, and the dough rolled out beautifully. It did crack a bit when we tried to put it in the pie plate, but we were able to smooth it back together.

Using nature for decorative inspiration. Tracing a maple leaf to decorate the gluten free pumpkin pie.

Once in the oven, even with the crust covered it did get a bit brown (all that sugar I’m thinking) but it came out looking quite normal! Not like the usual thick and dry GF pastry, but actual buttery flaky pastry. If I didn’t know it was gluten free, I might not believe it when looking at it.

Now for the taste test (where most gluten free things show their true colors). Drumroll please…

It tasted just as good as it looked! BUT it was very sweet. I’m talkin sugar cookie sweet. I would probably reduce the amount of sugar in the filling to make the whole pie less sweet. However it tasted GOOD. Like really good. The pastry was yummy on its own, and would make a good tart or popover. I think it would be especially good with a savory filling (as it might counter the sweetness of the dough.) Very impressed.

As the oven was still warm from the pie, we opted to try the cookie dough next. It was a bit hard to get out of the container right out of the fridge, and fell apart and crumbled. I let it warm up a bit, and then spooned it onto the baking tray in quinelle shape using a tablespoon (it was easier than trying to make balls). The container made 13 medium sized cookies. I followed the baking instructions to a tee and took them out at the short end of the baking time (I like a soft cookie.)

They came out of the oven looking like regular cookies (again a huge feat for gluten free baked goods), and they tasted great. Like the pie dough they were a bit too sweet for my liking. Eating more than one is hard without a big glass of milk. Certainly a treat.

Overall I don’t know if this is a product that I will keep in my house (although having some frozen could come in handy) but I would pick it up if I needed a quick dessert. I would absolutely recommend this for people who are entertaining a gluten free person. It’s so easy to make and you don’t need to have the expensive array of gluten free baking supplies in the house. It would also be really great for kids. There was a lot of “OMG I can’t believe this is gluten free?!”.

I’m pretty impressed that a big company would go to this length to provide a good tasting gluten free baked good option for the masses. I cant imagine how hard it is for kids who have Celiac, and having products like this will make them feel like they are not missing out, and that they get to eat “normal” food. I also can’t imagine how hard it is for parents to deal with the plethora of allergies children have these days. Birthday parties and bake sales must be incredibly hard. Hopefully products like this make things a heck of a lot easier.

P.S. Pillsbury also makes a gluten free pizza dough, which I will be on the lookout for next.

Oh, and hey! By the way, no one paid me to write this! I just thought I’d share my experience. Cheers!

Celiac Awareness Month

I apologize for the lack of post yesterday. I was in bed recovering from having accidentally ingested gluten. For those of you who don’t know, I have Celiac Disease. Gluten is my enemy, and now that I have been gluten free for six months, when I accidentally eat gluten, my body goes into overdrive to fight it off, and I get very very sick.

May is Celiac awareness month, and I wanted to take a moment to spread a bit of Celiac information, to help those who may think that they have Celiac disease. Or if you have friends or family that have been diagnosed, I hope this will help you understand it a bit more. An estimated 1 out of every 133 people has Celiac disease, but only about 3% have been diagnosed. The likelihood is that each and every one of you knows someone who is affected by Celiac Disease or a gluten intolerance.

What is Celiac Disease? Celiac Disease is an autoimmune disease. Your body sees gluten as a poison and tries to attack it, often doing incredible damage to your body in the crossfire.

What are the symptoms of Celiac? Celiac has a variety of symptoms, from “tummy trouble”, weight gain and/or loss, bloating, a red itchy rash, malnutrition and even infertility. Here’s a symptom checklist.

What is gluten?

Gluten is the elastic protein found in some grains such as wheat, barley and rye.

Is there a cure?

No, there is no absolute cure, and the only treatment is a life long gluten free diet.

Do Celiac’s just have to stop eating bread?

Bread is one (obvious) source of gluten, but there are many more you might not think of. Wheat and gluten are often used as binders or thickeners, so things like sausages, soups, sauces and spices might contain it. It’s in beer, malt vinegar, most cereals, soy sauce, and a lot of processed foods. It’s even in some medicine!

What is cross contamination?

People with Celiac can react to as little as a crumb of gluten. That means that Celiac’s cannot use the same toaster as one that’s been used to toast wheat bread, and they can even react to cutting boards and baking sheets that have been in contact with gluten. Heck, I reacted to tandoori roasted eggplant, because naan bread had been cooked in the same tandoor oven. If you have a Celiac friend or family member, please ask them before making any GF foods for them. As much as they appreciate it, you could unknowingly be making them sick. When someone is diagnosed with celiac disease, they are told to replace their toaster, wooden utensils and cutting boards, and any porous bakeware/pans or nonstick ones with scratches on them. Silicone spatulas can also harbor gluten, as can wood counter tops. (It sounds extreme, I know, but its true!) If you want to cook for a GF friend, consider buying them a treat made in a GF facility (like a baked good). Or bringing ingredients to their house for dinner such as meats, vegetables and cheeses.

Another cross contamination situation to be aware of is double dipping. If you butter your toast, then go back to the butter dish with the same knife, you are contaminating the butter. Same goes for jams, dips, mayo, peanut butter, and any other spreadable or dippable condiment.

Fast food oil is also an issue. If a fryer has been used to fry onion rings, or battered chicken/fish, it will contaminate the french fries with gluten. Cross contamination is a Celiac’s biggest nightmare, as gluten really is everywhere and there’s no way to tell if something is contaminated until it’s too late!

There’s good news though! Every day people are all becoming more gluten aware, and companies are doing their best to make good, affordable gluten free food. More and more restaurants are training their staff about gluten, and I hope one day soon I will be able to go and safely eat at any restaurant I like. Until then, I keep a Larabar in my purse at all times!

For more information check out:

National Foundation for Celiac Awareness

Canadian Celiac Association

Guest Postin @ Jamie-Leigh T.O. Gluten-Free Gluttony

Sorry no post from me here today, I am busy guest blogging over at Jamie-Leigh T.O.‘s Gluten-Free Gluttony about my advice/experience with going gluten free. Continue reading “Guest Postin @ Jamie-Leigh T.O. Gluten-Free Gluttony”

Iron Infusions

For those of you new here, I was diagnosed with Celiac Disease a few months ago and have been forced into a gluten free diet for life. I say forced, cause no one on earth would choose this ~~stupid~~ limited diet. I apologize for the personal post, but as this is a big part of my life now I feel strange about not sharing it with you. If you’re looking for DIY, skip this and come back tomorrow! (*and a warning, there is a photo of the IV, if you’re squeemish you may want to bail out!)

This week I underwent the first of many iron infusions. An iron infusion is not a shot of iron, but instead a large dose of iron on a slow drip into your blood stream. The infusions use the same machinery as chemo treatment, and are infused the same way over a 3-4 hour time span.

I headed to the hospital bright and early excited and with trepidation for my treatment. I was excited, because I have been feeling so terrible for the last 6+ months that I am excited to start feeling better again. Essentially my iron (and other vitamin & nutrients) were so depleted that my body was unable to produce normal red blood cells (they were small and not round). Red blood cells are used, well, for a lot of things but mostly to carry oxygen around your body. So with a low count of crappy red blood cells, I was experiencing extreme exhaustion, fatigue, brain fog, and got winded just walking up the stairs.

The trepidation was that I had heard horror stories about iron infusions gone bad (WHY DO I GOOGLE THINGS?!). The most common side effect is severe joint pain, and allergic reactions. I am glad I knew this going in, but it didn’t scare me any less!

An iphone selfie right before the IV. Do I look scared?

The worst part is getting the IV in. It took three tries, and they ended up having to go in at the inside of my elbow, which is an awkward place!

Once the IV was in, everything else was easy as pie! Because of the likelihood of allergic reactions (anything from itching at the injection site to anaphylactic shock) they do a test run with a low dose to see how you react. I experienced no negative reaction. Because I did so well, they elected to not give me benedryl. Which is great! (the benedryl can kick you on to your butt making you tired and useless for the next two days.) After my test dose they set me for the rest of my infusion. The whole process took about 5 hours total (they monitor you for about 30 mins afterwards to make sure you don’t explode or die or anything.)

Here’s my advice if you’re heading in for iron infusions. Take the whole day off work. Dress comfortably and warmly such as lululemons & a vest (hoodies are useless as you have to take them off for the IV & the blood pressure cuff). Bring a drink & a snack (you’ll be there a while!), a book, iphone or tablet and some music is a must. Also bring some kleenex, you will probably be the only person in the ward not going through chemo, and your heart will break at the struggle your new friends are going through. Warn your employer that you may be off the next day as well. Depending which form of iron they give you, the side effects can increase dramatically.

The next day I am tired and stiff, but I am excited to (hopefully) be feeling more energized soon! I feel like my trip to the hospital was like taking a car in for service and getting a new battery.

The Diagnosis

A few years ago, during a routine physical, my blood tests revealed abnormally low iron. My doctor prescribed iron tablets, which I took religiously. My next blood tests revealed that my iron had dropped considerably lower. My doctor upped my iron intake, and I changed my diet to ensure I ate as much iron as humanly possible, and that I did everything in my power to make sure my body absorbed it. Milk, fiber and caffeine can block iron absorption, whereas vitamin c can increase it. I worked so hard, and was so proud of myself only to find my levels had dropped even further. Also with the change in diet, and the massive amount of iron I was taking, my body had revolted and given me in exchange massive heartburn. Continue reading “The Diagnosis”