I Have Exciting News! (Hint: Big Ears)

My sons have shown very little interest in my blogging–except for when complimentary allergy-friendly cookies arrive in the mail. My husband likes to good-naturedly poke fun at my blogging at cocktail parties: “My wife gave up her day job to write a blog–for free.” Such a comedian, my husband.

But now they all think my blog is pretty darn cool.

You see I’m going to the very first  FOOD ALLERGY AND CELIAC CONVENTION in WALT DISNEY WORLD!!!!

I may or may not take the family . . .  they have four months to be really nice to me.

Here are the top reasons why I’m so excited about going–and why you should meet me there on November 22.

1. It’s WALT DISNEY WORLD people . . . c’mon who wouldn’t want to go to a convention in the magical kingdom?

2. I’m AN ALLERGIC FOODIE— I LOVE allergy-friendly and gluten-free food! FACCWDW promises food demos by topnotch Disney chefs and culinary professionals.  I’m pretty sure they’ll hand out samples, don’t you think? This means free food–food I can actually eat.

3. Experts–people who know more than I do about celiac disease and food allergies–will be speaking and answering questions. I’ve got lots and lots of questions.

4.  The behind-the-scene fairies of FACCWDW are two smart gals who look extra cute in those wings: Laurie Sadowski and Sarah Norris. Their desire to “celebrate awareness of food allergies and celiac disease” started it all. How could I not join in?

5. There will be a nondairy ice cream buffet.

6. I get to hang with the rest of the  Blogger Street Team. People like Erica of Celiac and the Beast, Janice of The Adult Side of Disney, and Christy of Celiac 411 . . . these and all the other bloggers are people I’d like to have a glass of wine with at the end of the day–wouldn’t you? I’ll introduce you to more of the Blogger Street Team later.

7.  The sponsors of the event, including Enjoy Life Foods and Allergic Living Magazine and many others, are companies that make my food-allergic/celiac life better. I’d like to shake their hands (and yes, maybe get a free chocolate chip cookie or two from Enjoy Life).

8. Disney is known as the “gold standard” of special dietary food preparation. Not only do I get to go to an awesome convention in an awesome hotel in an awesome setting, I get to EAT and not WORRY about getting sick. Magical? I’d say so.

Disclaimer: FACCWDW is not affiliated or hosted by the Walt Disney Company, or any of its affiliates or subsidiaries.

I’ve Got Exciting News! (Hint: Big Ears) first appeared at Adventures of An Allergic Foodie.

Life with Celiac Disease: Actress Jennifer Esposito shares her story

An Allergic Foodie Reviews JENNIFER’S WAY: MY JOURNEY WITH CELIAC DISEASE

With all the recent and irritating media attention on going gluten-free–and by this I mean the idiotic celebrities poking fun at a “fad diet”–Jennifer’s Way: My Journey with Celiac Disease by Jennifer Esposito (Da Capo Press, 2014)  is a frank and accurate account of what it’s like to live with this debilitating disease. While I strive to live a full and productive and happy life with this autoimmune disease, I certainly admit it has not been an easy journey. Making it worse is people not taking my symptoms seriously. Being a respected actress and businesswoman and sharing her story, Esposito is the voice for all of us who feel unacknowledged and alone.

Esposito’s diagnosis story is a page-turner. She suffered severe symptoms for 20 years: gastrointestinal issues, ongoing sinus infections, dumbness in her hands and feet, depression, panic attacks, hair loss, dental issues, and a miscarriage. I was astounded that someone with her clout and resources received the same lack of respect from medical professionals as the rest of us do. Before seeing the doctor who finally gave her illness a name, Esposito writes, “I expected nothing, but hoped for everything.” How many of us with this disease–or any autoimmune disease for that matter–have felt the same way?

Jennifer Esposito shares what it is  like to live with celiac disease in new memoir called Jennifer's Way.

Esposito vividly describes what it’s like for one’s body to detox from a lifetime of eating gluten. I’ve never read a truer account. Going gluten-free isn’t an overnight cure–it’s a process that can make one feel even worse than when eating bread and pasta. While every person’s course of healing is different, Esposito shares concrete tips on how she improved her health through self-study. She answers questions the medical establishment typically doesn’t. Readers will surely come away with an idea or two. I know I did.

While Esposito does share recipes from her successful gluten-free, dairy-free, soy-free, peanut-free organic New York City bakery, also named Jennifer’s Way, and she has plans to go nationwide with her baked goods (can’t wait!), this book is by no means a promotional tool as some may suspect. Nor is it a celebrity tell-all as those unfamiliar with celiac disease have ignorantly suggested. Jennifer’s Way is a supportive and informational guide for the newly diagnosed and the yet-to-be diagnosed. Family members and friends of those with celiac disease as well as those in the medical community should read this book. So should those joke-cracking celebrities.

The Jennifer’s Way Foundation for Celiac Education (JWF)

Interview with Katie Couric

An Allergic Foodie Reviews Jennifer’s Way first appeared at Adventures of an Allergic Foodie.

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.

Symptoms and Celiac

Not All of Us Want to Share Our Symptoms

I explained to the white-coated chef at the Marriott Residence Inn that I had celiac disease and a bunch of food allergies so I couldn’t eat the potatoes cooked in butter or the eggs or the yogurt or the cereal.

While I scooped fresh blueberries from the waffle station to top my Bakery on Main oatmeal, she circled me like paparazzi around Gwyneth Paltrow.

I knew what was coming.

“What are your symptoms?” she asked loud enough to make my husband cringe.

I looked around the room full of men and women in business attire and families with young children on school break and said softly, “Unpleasant ones.”

Now I have no problem talking about celiac disease and food allergies. After all, I spill my guts in this blog (pun intended). Of course, you may  notice I hide behind a lemon in sunglasses.

But if I’m in public, I’d rather not talk about my bathroom habits. And I’m almost positive these people eating their bagels and cream cheese didn’t want to hear about my flatulence and IBS.

This gal was relentless. “How unpleasant?”

Really? You really want me to talk about my diarrhea and painful cramps before I’ve even had a cup of coffee?  I glared at her. “I experience gastrointestinal issues.”

She got it. Finally.

Blushing, she said, “Oh, I just asked because I have eczema and people tell me maybe I should go off gluten.”

Why didn’t she just say that!

“Have you gone off gluten to see if it helps?”

“I probably should,” she said. “But I couldn’t possibly live without bread and pasta.”

May is Celiac Awareness Month

Let me share another story.

We are at a restaurant and the waiter asks what kind of allergy I have: “Is it the kind that makes you run to the bathroom, or run to the hospital?”

I know what you’re thinking: I’m making this up. I wish!

I could have told this waiter–who happened to look like one of those bronzed guys with the abs of steel in middle-of-the-night infomercials–if I eat even a crop of the sauce with the cream, I will spend the next three days glued to the toilet seat.  I could–and probably should–have told him it didn’t matter what kind of allergy I have–both symptoms are bad. If I continue to get sick from restaurants like his, I could get cancer.

Actually, I can’t remember what I said.  I’m pretty sure I went to the bar and ordered a goblet of wine, and my husband ordered me a plain filet with olive oil, salt and pepper and steamed broccoli (my go-to-allergy-safe meal).

Food Allergies have many symptoms

Now some people–I can think of several of my fellow bloggers–can easily speak out about their bathroom habits. Erica Dermer has a chapter in her book, Celiac and the Beast, titled “Let’s Talk About Butts: A Story of a Girl, Her Rectum, and the Scope That Loved Her.”  Erica probably wasn’t raised by a mother who ordered “chicken chest” for dinner, as I was.

Ironically, Erica doesn’t have the nasty GI symptoms that many of us do. In the first line of her book, she says, “I wish I could tell you that if I ate a bowl of Pasta Roni right now, I would swiftly crap my pants. I only wish this because then you would plainly see that something is very, very wrong with my insides.”

Erica goes on to say that her symptoms appear days or weeks later–sores in her mouth, a swollen tongue, extreme tiredness. “I experience the same life post-gluten as every other celiac,” she writes.

While we all are in this together, our symptoms may be similar and different. Celiac disease has over 300 symptoms! 300!  Throwing food allergies into the mix only complicates matters.  Your autoimmune system reacts to proteins in foods differently from my autoimmune system.

So when a waiter, a chef, your spouse’s boss, or someone in the grocery store checkout line who sees you buying Udi’s gluten-free bread asks you what your symptoms are, feel free to share if you like. But I prefer telling them to go to one of these websites:

Food Allergy Research & Education (FARE)

Fare has recently launched SafeFare, a resource center to make dining out safer

National Foundation for Celiac Awareness

Make sure you print out NFCA’s Celiac Awareness Month 2014 Toolkit

* * *

May is Celiac Awareness Month, and Food Allergy Awareness Week starts May 11, 2014.  Please share information about celiac disease and food allergies–especially symptoms so people will stop embarrassing An Allergic Foodie.

Not All of Us Want to Share Our Symptoms first appeared at Adventures of an Allergic Foodie.

The Masters and Pimento Cheese Sandwiches

I went to the Tuesday practice round of the Masters Golf Tournament in Augusta, GA this week.  It was exciting to see a few of the players I’ve been watching on TV for years as well as the notable and beautiful golf course.

And I’d read and heard so much about the food.

You had to know this would be about the food and not the golf, right?

Concessions at The Masters

Augusta National is famous for its $1.50 egg salad sandwiches and pimento cheese sandwiches served at the tournament. (I wonder if they charge so little so you won’t feel so bad about forking over $100 for a golf shirt later on?).  Having celiac disease and being allergic to dairy, I knew I wouldn’t get to eat either of these sandwiches and I bought along my own gluten-free ham sandwich.

Here’s the thing that surprised me though: The only healthful and non-wheat food choices were bananas and fruit cups (and I couldn’t even eat the fruit cups because they contained pineapple!).  The one food I could eat was a trusty bag of Cape Cod potato chips with this impressive packaging.

The only food an allergic foodie could eat at The Masters

For Eaters of Everything, there were mini moon pies, cookie sandwiches with Georgia peach ice cream in the center, caramel popcorn, and lots and lots of candy.

Hard to eat at The Masters if you have celiac disease and/or food allergies

Yup, it was all junk food. (I’d use another word but my  husband is afraid we’ll be banned from future tournaments if I do.)

Doesn’t it seem odd that an athletic event only served junk? Even baseball and football stadiums are offering gluten-free hotdogs and buns and salads these days.

DSC00173

I’m guessing at Augusta National, it’s all about tradition. People expect the pimento cheese sandwich and the mini moon pies. I get it.

But at an event that requires miles of walking and hours of standing, most of the spectators could probably use a little protein pick-me-up instead of a sugar rush.

Here’s the other thing that surprised me: I didn’t feel like I was missing out–even when my husband said the egg salad was really good. The old me would have been sad and maybe a little angry that she didn’t get to taste it. The new me really could care less.

Somewhere along the way, a switch has flipped.

I’m okay with “missing out,” especially when I know the food will make me sick. Really, really sick.

This doesn’t mean I wouldn’t have liked something besides a bag of chips.

After being a men-only golf club for 80 years, Augusta National invited two women to join, so maybe, just maybe, adding a salad with grilled chicken to the concessions isn’t too far off.

The Masters and Pimento Cheese Sandwiches first appeared at Adventures of an Allergic Foodie.

 

Breaking Up with Dr. Oz

Breaking Up with Dr. Oz

Dear Dr. Oz,

After thousands of afternoon dates, it’s time for us to go our separate ways.

You have lost my respect.

Like Dorothy who discovers the wizard is a fake, I have discovered you, Dr. Oz, are not the wizard of medicine you claim to be.

YOU CALLED A GLUTEN-FREE DIET A SCAM ON NATIONAL TV!  Millions and millions of people heard you! Including a few of my family members who think my celiac disease is all in my head. Thanks, Dr. Oz.

The audience even started cheering as if to say, “I knew all those gluten naysayers were idiots! Give me a slice of pizza now!”  Yes, you tried to cover up your error by saying “there are a lot of folks who have big time problem with gluten so I don’t have a problem with people who don’t like eating gluten foods…”

Don’t LIKE eating gluten foods! Huh?  I would LOVE to eat gluten foods–it’s my body that won’t let me!  Coincidentally I got “glutened” at a restaurant last night. Imagine a brick making its way through your digestive system. Today, I tried to run some errands, but I was so lethargic I was afraid to drive. It will be at least a week until I feel normal again.

This, Dr. Oz, is what living with CELIAC DISEASE is like. It is not a scam. Is is not BS. And when people hear a doctor call a gluten-free diet a scam, you hurt people like me and my son and the one in 133 of us with celiac disease. Not to mention the thousands and thousands of others with non-celiac gluten sensitivity.

That is why I am breaking up with you, Dr. Oz.

Don’t even think of sending me flowers.

Breaking Up with Dr. Oz” originally appeared at Adventures of An Allergic Foodie.