An Allergic College Student You Just Have to Meet

One of the things I love best about being a blogger is meeting remarkable people who are making a difference in the food allergy community. Recently, I met such a person, a college student about to graduate named Amanda Merrill. Amanda won the giveaway Amanda’s Own Confections and I ran a few weeks back. Coincidentally, she shared the first name of the owners’ daughter, which the company was named after.

As Amanda and I emailed back and forth, I knew right away that I had to share her story. Though Amanda was in the middle of final exams at Tufts University, in Boston, she took the time to answer my emailed questions.

An Allergic Foodie: Congrats on winning the allergy-friendly chocolate bars, Amanda! In an email, you mentioned your senior honors thesis has to do with food restrictions  . . . can you elaborate?

Amanda: Happy to, and I’m thrilled to win the chocolate bars because with my allergies it’s almost impossible to find chocolate I can eat. The title of my thesis is “Is Gluten-Free Worth the Price?” Basically, I looked to answer two questions: 1) if consumers are willing got pay extra for gluten-free certification, and 2) if so, how much are they willing to pay? This is the first study in this area, and I devised my own survey to distribute. In short, I concluded that consumers are willing to pay a premium. I am planning on publishing my findings in a journal.

An Allergic Foodie:  I know you came up with this topic because you yourself have many food restrictions. Did you always have food allergies?

Amanda: As a young child, I was first allergic to tomatoes, potatoes and chocolate, which was very hard for me because my dad is Italian and my mom has an Irish heritage. I couldn’t eat any of their traditional dishes. Luckily, I mostly outgrew these allergies –especially the chocolate!

Around middle-school, I started becoming violently ill after eating and I broke out in this terrible skin reaction that left me unable to even open my mouth. I saw many dermatologists who couldn’t figure out what was going on, and I did all sorts of dye and metal allergy tests. My mom was the one to ask for food allergy testing; that’s when I found out I was allergic to soy, nuts and beans. I still wasn’t feeling 100 percent and with more testing, I found out I was allergic to wheat. I have luckily never been hospitalized for a reaction, but I always carry an epi-pen because some of my allergies are life-threatening.

An Allergic Foodie: You said you “outgrew” some food allergies, have you developed any new ones and/or other health issues?

Amanda: I get tested for food allergies yearly. I am now only “borderline allergic” to tomatoes and potatoes so I can usually handle then in moderation and in small amounts. Unfortunately, some of my other allergies are worsening, and this year I discovered I’m allergic to apples, pineapple and sesame. I also have extreme seasonal allergies to everything from grass, pollen, dust, and mold to dog, cats and rabbits. I also suffer from IBS as well as a slow-moving colon and stomach-emptying processes, which constantly leaves me feeling bloated.

Amanda Merrill with Tufts University Mascot Jumbo the Elephant

Amanda Merrill with Tufts University Mascot Jumbo the Elephant

An Allergic Foodie: Your food restrictions must make dating and eating out difficult. How do you do it?

Amanda: If I am going on a date that involves going to dinner, I often spend hours researching restaurants, menus, policies, and contacting managers to coordinate a meal. One time, I was out in Boston and when the waiter brought over the manager, I began going through my allergies and making adjustments, etc. At one point, the manager, jokingly, told me that he might as well put me in a rabbit cage with a piece of lettuce and a water bottle. The funny thing is, I’m allergic to rabbits as well!

An Allergic Foodie:  I have a son in college dealing with celiac disease and I’d love to hear your tips for eating in a school setting.

Amanda:  When was looking at schools, I was really concerned about how I would eat.  When I arrived at Tufts, I met with a nutritionist/dietitian on campus. I’d advise any student with food allergies to research everything they can about the potential school’s dining services and to meet up with a nutritionist to discuss an eating plan.

In Tufts University’s dining hall, a nutrition card is placed above every food and condiment; the cards list every ingredient and has an allergen statement. The problem I run into is that Tufts, like many other dining halls, have all sorts of sauces, marinades, breading, etc. that contain wheat, soy, or another one of my allergens. I often cannot eat much or anything offered for meals and often end up eating a lot of salads and plain grilled chicken.

Since I cannot eat many dinner food items, the chefs prepare a separate meat for me–chicken, pork, or steak. They use a separate pan and just cook in olive oil, salt and pepper. Tufts had never had to deal with a student with so many allergies before, so I worked with the nutritionist to get more allergy-friendly choices. Now there is a separate refrigerator/freezer for items such as gluten-free breads, bagels, pizza crusts, and other baked goods as well as a special shelf with gluten-free cereal, granola, ice cream cones, and peanut butter and jelly–there’s even Sunbutter for those of us allergic to peanuts. I have my own special area for my foods that don’t contain my extensive allergies, and I even got the school to change to a soy-free cooking spray.

An Allergic Foodie: That’s so great that you’ve made a difference for future allergic students going to Tufts. I think you also are involved with FARE . . .

Amanda: I put together a team to walk in the Walk for Food Allergy Boston to raise money to assist in research for a cure. I hope to continue researching and advocating for food allergies in more ways post-graduation and would love to get more involved with FARE. I try to pass along their messages and awareness information as much as I can.

An Allergic Foodie: I love that you don’t let your food allergies hold you back! What are your plans after graduation?

Amanda: My double major is in Mathematics and Quantitative Economics. I will be working in a pricing and risk analyst position while taking the actuarial exams. My goal is to become a certified actuary. Also, I have been dancing since the age of three, taking ballet, tap, and jazz. At Tufts, I joined the ballroom dance team and competed in all ballroom and Latin dance styles. After graduation, I want to get back to studying classical ballet and pursue my dream of taking classes at Boston Ballet. Dancing is and has always been one of my passions aside from academics.

An Allergic Foodie: Thanks so much for making a difference, Amanda, and good luck with your job and dance– you are an inspiration to other college students with food allergies.

An Allergic College Student Your Just Have to Meet originally appeared at Adventures of an Allergic Foodie.

Interview with an Allergic Foodie

Food Allergy Blogger Interview: Amy from Adventures of An Allergic Foodie

AmyHappy Friday, everyone! We’ve been pretty blessed to have had some great food allergy advocates on our blog recently, and we’re proud to share with you our latest blog interview with Amy from Adventures of An Allergic Foodie!Amy has been diagnosed with multiple food allergies, and is in the unique position of having developed them later in life. Her blog focuses on living your life to the fullest and not letting food allergies hold you back. Her story is inspiring, and she was kind enough to share some of it in this interview.Kitchology: What was your first encounter with food allergies?

Amy: Well, I kind of have a long history with food allergies; it took me a long time to develop them. I started getting sick in 2003, and got a bunch of different diagnoses from doctors. I was 39 then, and they were saying it was fibroids, endometriosis, all kinds of things! I had a lot of procedures in my 40s, and I’m not sure if the surgeries triggered my celiac and food allergies or if they were symptoms. I wasn’t officially diagnosed with celiac disease until 2008, and after that I was diagnosed with multiple allergies.

I think that the surgeries and my food allergies are linked somehow. I had gall bladder surgery at one point, and the doctors were always saying I had reflux, but after being diagnosed with celiac disease and cutting out gluten, I have no reflux! Also before I was diagnosed with eosinophilic esophagitis, food kept getting stuck in my throat. It was painful– I was choking, couldn’t breathe. But that also turned out to be from food allergies!

I’ve been dealing with a lot of these symptoms since 2008, but once I took wheat out of my diet it all stops.

Kitchology: Well it’s really good that you found out what it was!

Amy: It took a long time! I share the history because I always thought deep down inside my problems were being caused by something else. I felt bad after each surgery, had the same problems I had before, and knew deep down inside it was something else. So I just kept persevering until I figured out what it was.

I think a lot of women get gallbladder disease in their 40s. I remember my doctor once told me to go to a fast food restaurant and eat fried food to see if I would react. I knew I would react! I did do it, and I did get a reaction, but I’m allergic to dairy, gluten and soy, so either way I would have gotten sick. So these problems, they can be food allergy related and you wouldn’t necessarily know.

I always thought you had celiac all your life, but I found out that some things trigger it. I like to share this with other woman because they may think they need a surgery, like gall bladder surgery or a hysterectomy, but it might be celiac disease or food allergies causing similar symptoms. I had all these procedures and surgeries but the gastrointestinal symptoms and the stomach pain continued; no healthcare practitioner ever mentioned celiac disease or food allergies as a possibility.

Kitchology: How have you dealt with being diagnosed with multiple food allergies? What are the biggest changes you’ve had to make?

Amy:

You know it’s funny, I came across these notes from when I was first diagnosed. I’m allergic to dairy, soy, gluten, I can’t have corn and a lot of other ones, and I was trying to learn the different names for processed foods that would have corn, dairy, etc. So I made these lists of all the different technical names for these food items, and I just recently found them again.

Some people might have one allergy, and that’s difficult, but having all these allergies, and figuring out all the foods, is overwhelming! At first I thought I could eat some processed foods but I eventually realized I had to avoid processed food and go paleo/caveman. That was hard for me because I grew up not being a very good cook. I had kids and was busy.

Honestly, the most positive thing from having food allergies is that I’m now feeding my family better. We’re eating better, buying organic, because of my food allergies. My husband jokes we go to better restaurants because the better restaurants cater to allergies!

The other positive thing is that I am now better able to help others who have food allergies. I just blogged about this; when my son started having stomach pain, right away I knew how to help him with taking gluten out of his diet. My older son has symptoms of dairy or lactose intolerance which have been getting worse and worse, and I knew exactly how to help them. It stinks that they have the allergies, but at least I know what to do about them instead of having to put my sons through tons of tests and surgeries.

Kitchology: What motivated you to start blogging?

Amy: Well I think I started a blog before AA; I did one called allergy free eating, but it was so overwhelming. I started it to figure out what I could eat. The thing is, I’m not really a chef– I’m a pretty good cook but not someone who can develop recipes. So it took me awhile to find my voice, to figure out what I wanted to write about.

With the kids off to college, and the hubby and I starting to travel, I didn’t want my celiac and allergies to hold me back from doing all these things I had planned. I’d finally gotten healthy after being sick for 10 years! So I decided to take a positive approach to celiac and food allergies, and that became the theme of my blog: don’t let celiac disease and food allergies hold you back. I started thinking with that, and hopefully it’ll help people. It’s a great outlook to have, to make the most of it.

When you first blog, it’s for yourself or your family. My first blog was whiny, and so I ended up deleting it. 2 years later, I’m a writer, an author of several new books, and I thought having a blog would be a good launching point to build a platform for a new book. I really wanted to write a book about dealing with food allergies. But now that I’m blogging, I find that I really like it! I’ll probably still pursue the book but I like blogging. There’s more interaction, which I like. I get feedback all the time, and I’m constantly in contact with my readers.

Kitchology: How is your blog doing?

Amy: Good. One thing I try not to think about—and that I figured you were going to ask me about!—is the stats. I just try not to analyze them too much. But I did notice all of a sudden that I’ve been getting more responses. I think it’s because the writing’s become a little more honest, more true to myself. I measure the success of my blog according to how many responses it’s getting. I feel like it’s a more reliable indicator.

Kitchology: Do you have any advice you’d like to offer aspiring bloggers?

Amy: Find your own unique voice. There’s a lot of blogs out there and there can always be more. Everybody knows something different, so find your niche, figure out what you want to write about. Like for me what I wanted to write about more is living life to the fullest with allergies, because I’ve reached that middle aged point and want to enjoy life and didn’t want health issues to hold me back. I want to be a role model for kids dealing with similar issues.

I think about my son, who’s only 20; if he eats a tiny crumb of he’s doubled over, lethargic, in terrible pain. He’s very skinny, and he’s in college right now. When I was in college I drank beer and pizza and had a great time! It’s kind of sad that he can’t do those things, and so I want to be a role model for him and teach him how to make choices. He can’t just get hungry and eat  whatever he wants to eat. Hee’s an audio engineer, and if he’s on set or doing a gig and gets hungry he can’t just go grab something with the guys. When he was in a dorm room he really couldn’t eat; there weren’t a lot of gluten-free options. It’s tough because he’s got a lifetime of living with this, whereas I didn’t get diagnosed until I was in my 40s. So I really want to do the best I can for him.

With my blog, it’s the same thing. I know there are other people out there dealing with the same kind of situation that might not have much of a support group, or someone to push them through and get them to live their lives the way they want to. So that’s what my blog is all about. Once you find out what your blog is about, what message you want to send, blogging will be easy. You just have to find your voice.

Thanks for stopping by! We hope you enjoyed this interview. If you’d like to learn more about Amy, visit her blog at Adventures of An Allergic Foodie.

This interview originally appeared at Kitchology Blog by Jessica Cue

Thanksgiving with Friends

A Thanksgiving Story That Will Give You Chills

It’s been a bad week.

If you follow me on Twitter or Facebook, you’ve seen my rantings about a proposed cell phone tower being erected between our house and our beloved mountain view. The cement had already been poured and it seemed likely that I’d spend my next thirty years staring at this iron monstrosity as I cooked dinner.

So I delayed blogging because this is supposed to be an upbeat blog about coping with food issues. I did not feel upbeat.

Being an allergic foodie, one of the things I do when I’m upset is eat. I just happened to receive not one but two packages with gluten-free and allergy-friendly foods in the mail.

Don’t think that’s the chilling part; keep reading.

The first one was from Tasterie.  Started by a pediatrician and mother of an allergic child, Tasterie is a mail order food company for those of us with CD or food allergies.

Tasterie deliver GF food

You can order a TasterieBox, like the one pictured above, tailored to your specific needs.  I ordered the Top 8 Box, which included a few brands I hadn’t found on my grocery store shelves yet, like dairy-free mozzarella, pie crust mix (perfect for the holidays), and pancake mix for when my GF college boy is home for his Thanksgiving break.

Then yesterday, the FedEx guy interrupted my angry tweets by delivering a large cardboard box from Udi’s Gluten Free.  Inside were lots of fixings for gluten-free/dairy-free/soy-free Thanksgiving dishes.  If you’re cooking this holiday, you must check out  Let’s Feast!  Udi’s Gluten-Free Thanksgiving Menu!  The idea is to use these recipes and host a “Friendsgiving.” How fun is that!

I loved getting all this yummy food especially during this stressful week, but I also felt kind of guilty. There are so many other people who are unemployed or housebound who could use this food.

I began blogging about my idea to cook some of Udi’s Friendsgiving dishes  along with Tasterie‘s pumpkin pie crust and share them with someone less fortunate who has celiac disease . . . but I didn’t know how to find such a person.

This is the chilling part.

My phone rang.  My friend Judy wanted my advice for a meal she was preparing for a woman with celiac disease. The woman has serious multiple sclerosis, has been bedridden for a long time, and has a 12-year-old son. I couldn’t believe it.

Chills, right?

So Judy and Ky are coming over on Saturday to help George and me prepare a Friendsgiving for this woman and her son using the Udi’s and Tasterie foods I received this week.

I’m feeling a lot less angry. I don’t have an answer regarding the cell tower, but something tells me the phone will ring with good news soon.

A Thanksgiving Story That Will Give You Chills first appeared in Adventures of an Allergic Foodie

Working Together to Avoid an Allergic Reaction

How do you feed a conference full of food allergic people?

One of the steps The South Point in Las Vegas took for the Food Allergy Bloggers Conference was listing the ingredients in the food served in the buffet line.

Food Labeling in Buffet

This labeling made eating easy–and safe!  But such attention to detail doesn’t always happen when those of us with food allergies eat in restaurants. In fact, studies have shown:

* 24 percent of restaurant staff believe consuming small amounts of allergens are safe;

* 25 percent believe a fryer destroys allergens; and

* 25 percent believe it is safe to remove an allergen, such as shell fish or nuts, from a finished meal.

Scary, isn’t it?

Dr. Lama Rimawi, founder of Tasterie, and Nona Narvaez, founder and executive director of Anaphylaxis and Food Allergy Association of Minnesota,  offered some terrific ideas for those of us wanting to eat out and for the folks making and serving our food.

For Restaurants

*  The most important statement you can make to a food allergic person is:  I don’t know.  It’s okay if you don’t know what’s in a product used in a dish, but it’s critical to be honest.

* Training your staff.  There are three different companies that certify food allergy training.  At least one person with food allergy training should be in the restaurant when food is being prepared and served.

* Listen to your customer!  Communication is essential.

For Consumers

* If you withhold information from restaurant staff regarding your dietary restrictions, the food establishment cannot accommodate your needs.  Seems obvious, doesn’t it?  But many diners are too embarrassed to communicate their food allergies.

* A good restaurant is going to send the chef to your table.  If they don’t, ask to speak to the chef or the manager.

* If you or a loved one has a reaction, report it to the restaurant. If that initial call never gets made, there is no tracking of the allergic episode.

* The FDA Food Code is a model code that assists governmental agencies to develop their own food safety rules. The model code is produced every four years, the last one being in 2009, and takes into consideration the best of food science to keep the public safe.  To find out what your state’s regulations are, contact your state health department.

You Can Always Go Home, But You Can’t Always Eat the Cheese

I grew up in a small town in Vermont,  passing by pastures of dairy cows on my way to school each morning.  Cheese was a diet staple: macaroni and cheese, grilled cheese, cheese and crackers, cheese on broccoli and on top of potatoes.  After swimming lessons in the summer, we stopped at one of the many “creemee” stands for a maple creemee (you may know it as soft-served ice cream) or a “swirl” (two flavors, like maple and vanilla, swirled together–yum!).  When Ben & Jerry’s first ice cream store opened in a renovated gas station in Burlington, it became a regular high school hangout.

Recently I returned to my hometown and I couldn’t help seeing the irony in my being allergic to cow’s milk.   No samples of Cabot cheddar or licks of creemees for me (the stands were on every corner beckoning me!).  I had to turn down my mother’s nightly offer of cheese and crackers, which she still enjoys with a glass of wine before dinner.

Some habits are hard to break.

But I’ve had to break mine.

If I eat just a smidge of dairy or a bite of egg, I’ll feel like a bull stampeded into my gut, my throat will constrict, and my face will become tomato-red.  I never had a problem during all those years of drinking milk for healthy teeth and strong bones.  How odd to develop such a severe allergy to something I grew up eating virtually every day.  But now my body definitely doesn’t like casein or whey, the proteins found in dairy products.

Experts say that children often outgrow their milk allergies, but those of us who develop them later in life aren’t so lucky.  Fortunately, I’ve found some wonderful substitutes.  Instead of ice cream, I enjoy natural sorbet without corn syrup (which is lower calorie too).  I put almond, rice, or hemp milk in my morning coffee.  Almond yogurt has recently hit our local grocery stores, and I can now eat one of my past favorite breakfasts: yogurt with fruit and granola.  I also make all sorts of delicious smoothies.  Since I’m also allergic to soy and have celiac disease, I must carefully read the labels on “dairy-free” items (so many have soy!), but Amy’s Kitchen has a to-die-for mac and cheese that is dairy-, soy- and gluten-free.  I did a happy dance the first time I tried it!   I also don’t seem to react to goat and sheep cheese, though I know this isn’t always the case with some milk-allergic persons.

I’m curious.  What foods did you grow up eating that you can’t eat today? And what substitute foods have you discovered?

Companies That Make Life Easier

For many  months after my diagnosis of celiac disease and food allergies (dairy, eggs, corn, soy, vanilla, nutmeg, to name a few), I often left the grocery store in tears.  Sure I’d find an organic gluten-free pizza sans dairy, but wouldn’t you know soy was listed in the ingredients.  I had no idea which brands of deli meats I could buy or which gluten-free breads didn’t use corn flour.  Which chickens and cows ate soy and corn and wheat, and which fed only on grass?  I’m embarrassed to say I often found myself throwing packages back onto the shelves in total frustration.

Today food shopping has become much easier thanks, in part, to the various companies who specialize in organic and non-allergy foods.  I plan to blog about my favorites in the near future, but the first I’d like to mention is Mile High Organics, an online retailer serving Colorado’s Front Range and the first online grocer to be USCA certified.  Every Saturday a box of organic, non-genetically modified fruits and vegetables, as well as other items I’ve ordered, arrives on my doorstep.  It’s like Christmas.  Thankfully the order comes with recipes because I don’t always know how to prepare kale, beets and other veggies.  What I like best about this service is the time it saves me from scouring the produce aisles and reading packages.   I also find that it makes me try new foods and preparations, which is great for someone with leaky gut.

To see if you have such a delivery service in your area, search online organic grocers on the Web, and please share any of your favorite allergy-aware companies.

Aside

Preparing for Italy

Spaghetti all' arrabbiata

Image via Wikipedia

Wondering how I would communicate my food allergies to servers in Italy, I did what all Americans do in a quandary: I turned to google.  I was pleasantly surprised to find a long list of websites offering translation cards in many languages and at low-cost.  The one I chose was actually free at Allergy Free Passport.

Within seconds I had a pocket-sized dining card listing the most common allergies in both English and Italian.  Now some other websites offer customized cards, but for my purposes the top allergies were sufficient.  I simply drew a line through the allergies that didn’t apply to me. Then I took one of the cards to the office supply store and had it laminated for about a dollar.  How easy was that!

The other cool thing I found at Allergy Free Passport was an e-book, Allergen Free Dining In Italian Restaurants, which I quickly bought and downloaded on my iPad to take with me.

Now I feel prepared to eat out in Italy!  Do any of you have a suggestion for traveling with celiac and allergies?