Planning a Disney Trip with a Special Diet: Celebrating this November

Originally posted on Food Allergy & Celiac Convention:

Blogger Street Team member Amy (aka Allergic Foodie) shares with us her excitement of travelling to Disney World this November to celebrate her recovery. Her blog Adventures of an Allergic Foodie provides help to fellow adults and families by sharing strategies, research, helpful products, personal stories, and more with insight in living food allergies, celiac disease and eosinophilic esophagitis. 

Go Back to Spring Break 2004. There I was in the happiest places on earth—Disneyland—feeling miserable. While my husband and two sons ran around the park enjoying a lifetime experience of rides, attractions and food, I crawled back to our hotel room and slinked into bed. The pain was unbearable and I was so exhausted, a kind of exhaustion I’d never felt before.

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We’d flown to Anaheim from Colorado Springs to promote my second nonfiction book, The Pregnancy Bed Rest Book. Ah, I see the irony now–the book was for pregnant…

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Food Allergies & Celiac Disease: Tips for Coping at Work

Coping with Food Restrictions at Work

My oldest son just celebrated a birthday. Having graduated from college last May, he is now working his first real job in an office setting and living on his own. I laughed when he said, “Birthdays just aren’t as much fun when you’re a grownup.”

No matter how old you are, birthdays aren’t as much fun when you have to pass on the birthday cake, too. College Grad is allergic to dairy and eggs. Of course, there are plenty of treats he can eat, but the office is small and they are evidently unaware of the nearby allergy-friendly and vegan-friendly bakery with cupcakes like the one below.

cupcake

A few years ago, for a short time, I worked in an office. I didn’t know back then that food was making me sick. I’d buy a sandwich on wheat bread or bring one from home and spend the rest of the day doubled over. Fortunately, the company allowed me to work at home often, but I became so focused on figuring out what was wrong with me, I resigned. My husband likes to say I quite my job to be a blogger.

That experience, and now having a son with allergies in the working world, has made me empathetic to those who must manage food restrictions among co-workers who don’t alway understand. Even my younger son in college experiences challenges managing his celiac disease while interning for companies. Both sons developed allergies and celiac disease as young adults, so they had to learn to speak up for themselves; a teacher or a parent wasn’t always there to ensure their  food safety. Still, when you’re young and interning or starting your first job, it’s not easy to ask your manager to wipe the cookie crumbs off the counter or explain to the company CEO why you can’t eat the cheese pizza he just bought for the staff.

One of my friends, a project manager who developed anaphylactic reactions in her thirties, told me how she had to train her staff to use an epipen.  Can you imagine? Who wants to stick a needle in their boss’s thigh? A man I recently met shared how uncomfortable it is to have a reaction among co-workers and be the center of attention. He worried that others would view him as weak.

Whether you’ve grown up with food restrictions or reactions are new, you must learn to speak up for yourself and be proactive in managing your dietary needs. Christina Griffin, who blogs at Bubble Girl Happily, and Alice Enevoldsen have written a terrific guide Managing Food Allergies in the Workplace.  This manual is for both food-allergic folks and for their employers. FARE also has useful information.

My sons and I would love to hear your stories and workplace tips.Coping with Food Restrictions at Work first appeared on Adventures of an Allergic Foodie.

Erica Brahan, a high school senior writes honestly about living life with food restrictions

Food Restrictions: A Teen’s Survival Guide

I’ve been feeling pretty cool lately because quite a few high school and college kids following me on Instagram and Twitter.

Wait! It  just dawned on me that I hide my face behind a lemon with sunglasses. So maybe the girls think I’m actually a hot hipster guy and the guys think I’m one of those size-2 cross-fit smoothie-drinking girls. But then again, if I was a size-2 cross-fit girl I wouldn’t be using a lemon’s mug shot, would I?

None the less, it sure makes me feel good when people my kids’ ages want to see the photos of food I post or the info I tweet. I was super flattered when a high school senior named Erica Brahan asked me to review an e-book she wrote called  A Teenager’s Perspective on Food Restrictions: A Practical Guide to Keep from Going Crazy.

Poor Erica probably thought I’d never actually review it because I’ve been crazy busy with my social media addiction. But when I finally opened the pages of Erica’s e-book, I was hooked.

A Teen's Perspective on Food Restrictions

Erica has an upbeat attitude about life with multiple food restrictions, yet she doesn’t sugarcoat the very real challenges young adults like her face. While food restrictions are difficult at any age, fitting in is especially important to high school and college students. Erica writes,  “When eating other than the standard American diet, teens stand out and may be labeled as different or not normal. When you don’t fit in there is typically a desire to find others like you, but there is not usually a strong and united support system for teens with food restrictions.”

To help teens deal with food allergies, celiac disease, or other special diets needed for health problems, Erica asks readers to answer probing questions such as What are my dreams? Is my current health preventing me from achieving them?  She then provides concrete ways to overcome obstacles.  Among topics discussed are friends who don’t understand, dating difficulties, eating in school cafeterias, and choosing colleges. Readers can also find support and encouragement from others’ stories.

While A Teenager’s Perspective on Food Restrictions is aimed at young adults, parents and other family members as well as teachers and counselors can learn from Erica’s experiences and honest writing.  You can purchase her book at Amazon and Barnes and Noble, or from her website.

Other Resources for Teens (and Their Parents)

Erica’s blog: Edible Attitudes

Gluten Away (a teenager’s blog about celiac disease)

Teens with Food Restrictions Facebook Group

FARE Resources for Teens

Food Allergies and Anti-Bullying

Celiac Disease and College

Managing Food Allergies at College

Help My Teenager has Coeliac Disease! 

On Twitter: @teenallergies, @celiacteen, @coeliacteens

Please let me know about any other resources for teens and young adults.

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Food Restrictions: A Teen’s Survival Guide first appeared on Adventures of an Allergic Foodie

Food Allergies have many symptoms

We Didn’t All Grow Up with Food Allergies

Sitting at the hotel bar during a recent food allergy conference I was surprised–no, shocked– when two mothers of food-allergic children told me that adults shouldn’t need help coping with their allergies. They were wondering why I was at the conference. Now before you get angry, let me explain their side. They assumed all adults with food allergies had developed them as children. Hence, by adulthood, food-allergic folks should be experienced–physically and emotionally–at handling restrictions and reactions.

Imagine! I had no idea some people thought this way! Of course, I quickly took this opportunity to tell them how wrong they were.

I explained people can develop food allergies and celiac disease and other health issues requiring food restrictions at any time in life. I shared that my symptoms started in my late thirties, though it took nearly ten years to find out multiple food allergies, celiac disease, and eosinophilic esophagitis were the cause.

My kids ate everything–and I mean everything!–when they were little. Their food issues developed as teens. My oldest son realized dairy and eggs were off-limits in high school, and my youngest started showing signs of celiac disease his first year in college. I also mentioned one of my adult friends couldn’t eat dairy and gluten due to Crohn’s Disease and another developed life-threatening reactions to many foods in her thirties. Oh, and by the way, one of my favorite attendees at the conference was a spunky senior citizen with over 40 recently diagnosed food allergies and intolerances.

Adult with 40+ Allergies

After we were all on our second glass of wine, I may have suggested that getting diagnosed with food allergies as an adult may actually be more difficult than being diagnosed as a child. What I was trying to say is the food-allergic adults needed the conference as much as the parents of food-allergic kids did.  Figuring out all the foods containing soy, dairy, gluten and corn fell on my shoulders–I didn’t have mom and dad to guide me. My young adult sons taught themselves how to negotiate school cafeterias and participate in social activities with peers who didn’t get that food could make them horribly sick. My oldest even figured out how to eat dairy- and egg-free in Italy, the land of pizza and cheese.  After years of not needing to worry about allergy-friendly menus, or planes with peanuts, or explaining to family members why they couldn’t double-dip, becoming  “the weird person who can’t eat anything” is like being a foreigner in a new land–yet the doctors don’t offer any counseling.

I think the women were kind of tired of me by then. They wanted to get back to talking about preschools and camps. But this conversation opened my eyes to how some people may view adults with food allergies.  Will a waiter or chef who thinks I’ve managed celiac disease all my life  have a false sense of security that I know what I’m doing when ordering my food? Will my co-workers and friends not believe me when I become sick from food; after all, shouldn’t I know how to eat by now? My own mother doesn’t understand my health issues because I didn’t have food allergies as a child, so how can I expect strangers to understand?

Fortunately, there are those out there who do get it. The next few blog posts will focus on resources for teens and adults, starting with Erica Brahan’s “A Teenager’s Perspective on Food Restrictions: A Practical Guide to Keep from Going Crazy.” Gotta love the title.

Please be sure to let me know of any resources I miss. And remember, I do know how difficult a later-in-life diagnosis is–I am here to help.

We Didn’t All Grow Up with Food Allergies first appeared at Adventures of an Allergic Foodie.

Why Some Restaurants Shouldn't Have Gluten-Free Menus

Some Restaurants Shouldn’t Have Gluten-Free Menus

Ten days ago I posted a photo on Instagram of an awesome gluten-free pizza using Udi’s Gluten-Free crust that I enjoyed at Flatiron’s American Bar and Grill in Colorado Springs. I hadn’t eaten at this restaurant for over six months because all I could ever order was salad. You all know what that’s like.

Some Restaurants Shouldn't Have Gluten-Free Menus

So imagine my surprise when I learned Flatiron’s now had a huge gluten-free menu that could also accommodate my dairy and soy and corn allergies. We’d just picked the College Celiac up from the airport and I was thrilled we went to Flatiron’s because he could eat safely. I even tweeted my appreciation. The restaurant is locally owned and I like to support neighborhood businesses.

Last night I was craving that pizza. So my husband and I went to Flatiron’s and I ordered the exact pizza I ordered ten days earlier: Veggie pizza but substitute the poblano peppers and garlic for pepperoni. I clearly stated that I was celiac and needed the pizza to be as clean as possible.

The pizza arrives with cheese, which was entirely my fault. I sometimes forget pizza typically comes with cheese! I send the pizza back and the next one arrives with no cheese and no pepperoni. Overcooked, barely any sauce, it tastes awful. And I know that Udi’s Gluten-Free pizza crust tastes good when cooked correctly.

I whip out my camera and show the ten-day-old Instagram pizza photo to the manager who says matter-of-factly, “That doesn’t look like our gluten-free crust, it looks like our regular crust.”

Here’s a photo of the one I got last night. The only difference I see is this one is overcooked and lacking sauce and pepperoni.

Bad Gluten-Free Pizza at Flatiron's

I turn to my husband. “So I guess I can eat gluten now.” I was being sarcastic. It was late and I was hungry.

The manager says, “Maybe you’re not allergic anymore, I’ve heard that can happen.”

I just stared at my husband with my mouth wide open. Here is a manager of a restaurant with a huge gluten-free menu–they even advertise 20 percent off gluten-free items on Thursdays–who clearly has no understanding of celiac disease or a wheat allergy.

I should have said something like, “Celiac disease is an autoimmune disease with over 300 symptoms and it is not reversible. The only cure is to not eat gluten.” But at that point, I just wanted to go home and get in my jammies and heat up a can of soup.  We left cash to cover our wines and bolted out the door.

Of course, as soon as I got home I tweeted about my bad experience.

People jumped to my defense and were appalled by the manager’s ignorance.  I just love my Twitter friends.

So here is what I woke up this morning thinking: If a restaurant is going to offer a gluten-free menu, every single employee must be educated and trained. They must understand what celiac disease and food allergies are, and why preventing cross-contamination is so important. They must understand that one wrong ingredient can be life-threatening. They must take their customers’ health concerns seriously.

Otherwise, don’t even bother offering a gluten-free or allergy-friendly menu.

I’d rather order that boring old salad than risk getting sick. I certainly don’t want my youngest son with celiac disease and my oldest with dairy and egg allergies to think they are ordering safely when they aren’t.

Ten days ago, I thought I’d re-discovered a restaurant I could eat in. Obviously I was wrong. Just because a restaurant has an extensive gluten-free menu doesn’t mean you should eat there. I’m pretty sure this restaurant, like so many others, jumped on the gluten-free diet movement to make a profit. If they are serious about serving their celiac and allergic customers, they’ll immediately remove the gluten-free menu while they get proper training for the waitstaff and the chefs and the managers. This experience makes me question every restaurant’s reason for offering gluten-free choices–unless I see a certification from a third-party or talk to a manager who clearly “gets it,” I won’t feel safe dining out.

Here’s the other thing that bothers me about this whole experience. As a blogger and social media guru, I recommended this restaurant to my celiac and food-allergic brothers and sisters. Less than two weeks after doing so, I realized this is not a safe restaurant to eat in. So should I stop reviewing restaurants and posting food photos on Instagram? I’m still trying to figure this one out.

Oh, and by the way, I did get sick the next morning–even after eating one small piece of the pizza.

Some Restaurants Shouldn’t Have Gluten-Free Menus appeared first on Adventures of an Allergic Foodie.

Celiacs Speak Out about FDA’S New Gluten-Free Labeling Rule

Today’s the day the FDA’s gluten-free labeling rule goes into effect. Hear what those of us with celiac disease have  to say about this new ruling that will impact our lives significantly. I will update this list as new blogs are posted–be sure to let me know of any you read or write.

Celiac and The Beast:  Aug 5 Gluten Free Labeling Just a Start

Gluten Dude:  The New FDA Gluten-Free Labeling Rules: The Good, the Bad, and the Ugly

Gluten-Free Fun:  Today Is the Day: Gluten-Free Labeling Rules

Gluten Free Gigi:  FDA Guidelines for Gluten-Free Labeling are Frightening for Celiacs

Gluten Free Watchdog: Food Labeled Gluten Free Must Now Be in Compliance with the FDA Gluten-Free Labeling Rule

The Savvy Celiac:  10 Things to Know about the FDA’s Gluten-Free Labeling Rule

Simply Gluten-Free:   All You Need to Know about the New Gluten-Free Labeling Rule 

The Tasteful Pantry:  The Tasteful Pantry’s “Gluten-Free” Boxes and Products Following the New FDA Rules

Tumbling Gluten Free:  Tricked Out Tuesday: Pop Culture Label Takes on Gluten-Free Labeling

 

Celiacs Speak Out about FDA’s New Gluten-Free Labeling Rule appeared first on Adventures of an Allergic Foodie.