Questions about Celiac Disease? A Helpful List

I recently attended my first local Celiac Support Association meeting. The library conference room was full of newbie celiacs along with some old-timers; I fell somewhere in the middle. Coupons, recipes, pancake mix, and a grocery store’s  gluten-free directory were distributed. The speaker was a nutritionist, one I had visited during my first months following my diagnosis of celiac  and multiple food allergies. Being a regular speaker, she seemed to have run out of material and spent the hour talking about other autoimmune diseases–all of which those of us with celiac disease are at greater risk for.

Talk about a downer.

When it was time for questions, hands shot up. “Is there a link between celiac disease and depression?” “What probiotic do you recommend?” “What do you think of the Paleo diet?”

It was obvious: Those of us with celiac disease have a lot of questions.

Looking around the room, I noticed most of the attendees were silver-haired, reminding me of my mother who doesn’t own a computer. This also explained why it had taken me six years to find this group–they didn’t have much of an online presence. Without a search engine, how do folks find information about this life-changing disease?

Of course, a medical professional would be the ultimate resource, but how many of us have gotten no more direction from our doctors than “Don’t eat gluten.” A monthly meeting–if you can find one–is helpful, but probably not enough.

So I decided to make a list incorporating both internet and non-internet resources, many of which I have personally found useful. Later, I’ll do one for food allergies.


 

An Allergic Foodie’s Favorite Gluten-Free Resources

Books, Medical

I stick to books specifically about celiac disease and less about how gluten causes us to be overweight, stupid and evil.

The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance–and the Cutting-Edge Science that Promises Hope by Donna Jackson Nakazawa (Author), Douglas Kerr (Foreword)

Celiac Disease: A Hidden Epidemicby by Peter H. Green, M.D. and Rory Jones

Mayo Clinic Going Gluten Free by Joseph A. Murray, MD

Books, Memoir

Celiac and the Beast: A Love Story between a Gluten-free Girl, her Genes, and a Broken Digestive Tract by Erica Dermer (Note: I appreciate Erica’s blatant prose, but not everyone will.)

Jennifer’s Way: My Journey with Celiac Disease–What Doctors Don’t Tell You and How You Can Learn to Live Again by Jennifer Esposito

Conferences

Conferences can be a great way not only to learn from healthcare experts but also to connect with others with celiac disease. Many nonprofit organizations, listed below,  host national and state conferences and/or symposiums. Of course, they can take time and money; look for one close by or tie into a business trip or a family gathering. 

A good list of upcoming events: http://www.celiaccentral.org/community/Upcoming-Events/78/

Celiac Disease Foundation Conference:  http://www.celiac.org/get-involved/conference-expo/gluten-free-expo/

Gluten-Free Drugs

http://www.glutenfreedrugs.com

Organizations

Celiac Disease Foundation: https://www.celiac.org

Gluten Intolerance Group (GIG):  https://www.gluten.net

National Foundation for Celiac Awareness:  https://www.celiaccentral.org

Magazines

Some of these magazines can be found at grocery stores and bookstores.

Allergic Living: http://www.allergicliving.com

Journal of Gluten Sensitivity:  http://www.celiac.com/store/journal-gluten-sensitivity-c-47.html

Living Without’s Gluten-Free and More: http://www.glutenfreeandmore.com

Simply Gluten-Free:  http://www.simplygluten-free.com

Gluten-Free Conventions and Expos

A convention is a gathering of folks who have something in common and typically occurs every few years. Companies with products, such as gluten-free food, come to educate attendees about their products in an exhibition hall. This is a great way to meet people, form friendships, and taste test. If you’re traveling to an expo, always pack light as you’ll receive lots of giveaways. I can’t possibly list all the conventions and expos, but since I’m an official blogger for this one, I’m including it.

Food Allergy and Celiac Convention, Orlando, Nov. 3-6, 2014: http://www.celebrateawareness.com

I also think this one is really cool because you can go in your pajamas and a 17-year-old blogger came up with the idea.

Gluten Away Online Expo: http://www.glutenawayexpo.com

Gluten-Free Food (Where to Find)

Conventions and Expos (which you just read about)

Gluten-Free Food Fairs at grocery stores, such as Whole Foods, Natural Grocers, Trader Joe’s

Gluten-Free Buyers Guide by Josh Schieffer, updated yearly: http://www.glutenfreebuyersguide.com

Some grocery stores have printouts of gluten-free products the store carries; ask customer service

Mail-order (http://www.wellamy.com; http://www.tasterie.com)

Pinterest Boards

Support Groups

If you can’t find any information online, ask local gastrointestinal medical offices and nutritionists.

Celiac Disease Foundation: https://www.celiac.org/chapters

Celiac Support Association:  https://www.csaceliacs.org

Online Support Groups

Go to your favorite social network–Google+, Facebook–and run a search.  Type in “Celiac Disease Support.”  Consider the size of the group. For instance, Celiac Disease Support Group on Facebook has over 7,000 members. You may want to define a group you join by size, location, age (adults-only or families). Be wary of groups for gluten-free dieters who don’t have gluten sensitivity or celiac.

Summits and Webinars

Online summits, such as the recent Food Allergy Wellness Summit, are typically free for the first week of release and then the organizer will sell tapes. I have participated in several–both as a participant and as a speaker. I find them beneficial, especially when medical professionals participate.

Some organizations, such as NFCA, offer free webinars on various topics. They are often archived so you can watch at your convenience.  I recommend  http://www.celiaccentral.org/community/Free-Webinars/110/

Websites/Bloggers

The following websites regularly update their lists of bloggers.

Freedible : http://www.freedible.com

Gluten-Free Global Community:  http://www.simplygluten-free.com/gluten-free-global-community

Celiac Central (NFCA): http://www.celiaccentral.org/Resources/Gluten-Free-Bloggers/125/


Looking for Answers about Celiac Disease: A Helpful List first appeared at Adventures of an Allergic Foodie.

Renewed Faith: A Waiter Who Cared

The smiling white-coated waiter glided up to our rooftop table and introduced himself as Paul.

“I understand there are some food allergies at this table,” Paul said,  handing  us leather-bound menus.

When I’d made the reservation for Watermark Restaurant in Nashville on Urban Spoon, I listed my son’s and my celiac disease as well as my allergies to soy and dairy. We were driving through Nashville on our way home to Colorado and wanted to have a special family dinner with our college boy. Watermark was on our bucket list of restaurants to try.

“I’ve gone over your food restrictions with the chef and I’ve marked what dishes have your allergens.” I looked down at the extensive menu where Paul had placed an X for not gluten-friendly and crossed out the items containing dairy. “Of course, we can also make accommodations, such as leaving off butter. And you don’t have to worry about soy here.”

The chef marked what I could and couldn't eat before I arrived

His words were music to An Allergic Foodie’s ears. I told him how much I appreciated his efforts. Little did he know I had recently had a terrible experience when a chef didn’t want to communicate with the waitstaff and didn’t take my food restrictions seriously. I actually think this demon chef, as I’ve come to call him, intentionally “poisoned” me by including allergens in my food.

After taking our drink orders, Paul then told me because we had decided to eat outside, he didn’t have our table. I panicked. I wanted Paul! The waiter who had done his homework to provide a complete stranger with a safe meal. We considered changing to an inside table, but after a day in the car driving for eight hours, we were enjoying the pleasant evening air.

Watermark Restaurant in Nashville

Paul returned with our drinks. “Well, looks like I’ll be your waiter after all.  The other waiter is uncomfortable with your food allergies.”

This was a first.  A waiter who fully admitted food allergies alarmed him. I appreciated the other waiter’s honesty, especially since it meant I got Paul back. I’ve often witnessed  a waiter’s anxiety over serving me, but I’ve never had someone pass the reigns to a waiter who was more experienced and comfortable with special dietary needs. Kudos to the waiter who didn’t want to serve me for the right reason–not because I was a pain in the neck, but because he wanted to keep my son and me safe.

Executive Chef Joe Shaw’s  food was heavenly. Each of our appetizers and main meals were a work of art and just as delicious as they looked.  For appetizers, Steve had pan-seared scallops with duck confit over a sweet potato puree and poultry demi glace. I had New Orleans style barbecue shrimp, and George had corn and duck egg custard with pan-seared foie gras.

Watermark Restaurant

Watermark uses a wood grill–absolutely no gas–that lended my main dish,  a Niman Ranch pork chop a mouth-watering hickory flavor. Even the rapini melted in my mouth. Steve had lamb on ratatouille and George had his usual ribeye though he said there was nothing usual about it.

Renewed Faith: A Waiter Who Cared

Since developing food allergies and celiac disease I’ve had more terrible experiences than good ones. But Paul gave me hope that there are those in the restaurant industry who do take my son’s and my health seriously–and who take pleasure in serving us.

Thank you, Paul, for renewing my faith.

Renewed Faith: A Waiter Who Cared first appeared at Adventures of an Allergic Foodie.

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.

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.

Eat Without Me! Please!

Our book club alternates meetings between restaurants and our homes. As the “one with food issues,” I am given the final say on the restaurants where we’ll meet and eat. No problem there. It’s when we gather at one another’s homes that problems arise.

What can Amy eat? I bought these gluten-free crackers especially for her. Oh, I forgot she can’t have milk. When did Amy become allergic to soy, I thought she just had celiac disease? Why isn’t she eating the carrots? What do you mean the veggies can’t be served on the same platter as the crackers?

Just this morning one of my book club friends asked if I could eat Chicken Curry (our current book takes place in India). I figured she had found a safe recipe for me; after all, isn’t curry often made with coconut milk? When she emailed the recipe, I was surprised to see sour cream and mayo. Now this is a person I have traveled with and eaten out with many times, so I was a little surprised she didn’t remember I was allergic to dairy and eggs.

But I let it slide.

Of course, there are several perfectly acceptable things I could have done. I could have suggested she take a look at the recipes over at Freedible or on my Pinterest board and make some substitutions. I could have asked her to make me a plain piece of chicken. I could have offered to make a salad or a side dish.

But I simply told her I would eat before I came.

You see not eating at book club IS NOT A BIG DEAL. I am there for the book discussion and the comradery. And okay, maybe a little for the wine. But never for the food.

I have learned a long time ago that eating before I go to people’s houses is safer and easier–for me and for the host. Of course, when first diagnosed, I do remember feeling left out, especially during the holiday season when the food looked so festive and tasty. I do remember wishing I didn’t have to always pass on the birthday cake or the special tapa a chef brought to the table.

But somewhere along the way, I stopped caring–and when I stopped caring, I started enjoying life more.

While I consider myself a true foodie, I don’t feel like food always has to be the center of every social event. I can enjoy myself on just about any occasion without having to eat. In fact, by not having to think about what’s in that curry sauce, or if there are croutons in the salad, or if that fork touched the pasta, I am free to enjoy myself more. I think it’s harder for those without dietary restrictions to understand this.

So tonight at book club, I’ll probably be asked why I’m not eating along with a dozen other questions about what I can and cannot eat. But that’s okay. I figure if I keep declaring my independence from food and my food restrictions, someday my friends will stop trying to feed me.

Someday.

________________________

This post originally appeared on Freedible in honor of  Declare Your Independence from Food Restrictions Month.  Anyone with any food restrictions should check out this website. It’s a place to connect with people who eat the way you do.

Why He'll Never Suggest Lettuce for Lunch Again

Why He’ll Never Suggest Lettuce for Lunch Again

We’d been driving for a day and a half and were only halfway home. The high winds across the Kansas plains and the oversized trucks creeping into our lane forced my husband to keep a hands-of-steel grip on the wheel while I kept eyeing the sky for a tornado.

An Allergic Foodie and her husband don't always agree on where to eat

We were a little on edge.

And we were hungry.

When we finally decided to stop for lunch, we began quarreling. For us, quarreling involves a lot of silence.

Husband-Who-Can-Eat-Everything wanted to stop at Taco John’s. With my soy, dairy, gluten, and corn allergies, I didn’t even want to breathe the air in Taco John’s.

Besides, Husband-Who-Can-Eat-Everything knew I wasn’t looking forward to the three-day-old tuna and garbanzo beans I’d packed for myself. He knew this because I kept opening all the apps on my iPhone–Allergy Eats, Find Me Gluten Free, YoDish–and reading the reviews.

Still, he said, “Taco John’s has salad. Did you bring salad dressing?”

“Yay, more salad,” I said.

“The lettuce looked fresh last time.”

“How would you like a bowl of lettuce for lunch?”

Silence.

I pulled up Taco John’s list of allergens on my iPhone. Just about everything has milk, wheat and/or soy.

Except maybe the lettuce.

“I just thought you ‘d want to order something while I ate,” he said.

“Lettuce?”

More silence.

Food Allergies and relationships are a difficult journey

A few exits later, my husband of 20+ years tried to explain how he thought he was being thoughtful. Almost six weeks ago, on the drive out, he’d gotten Taco John’s to-go and taken it to Subway; a food-allergy app had given the Subway salad bar a good review.

While standing in the salad line, I watched the worker make pizza with gloves, then dip the same gloved hands into the salad ingredients. Even if he changed gloves, the tomatoes and lettuce and cucumbers were already contaminated with wheat.

I passed on the salad. My husband ate his tacos and I ate my fruit and almond-milk yogurt in one of the Subway booths.

It was a little weird. But if  an employee had said anything, they’d get an earful about how anyone with celiac or a gluten intolerance would get sick from Subway’s unsafe practices.

So this time around, my husband didn’t want me to feel uncomfortable by eating outside food in a Taco John’s booth. That’s how he was being considerate. To me, suggesting we go to a grocery store and picking up food we both could eat would be considerate. But that’s just me.

Here’s the thing: I GET IT!  My food allergies are not only a pain in the butt for me– but for him, too!

After a long difficult drive, he wanted tacos. He didn’t want to have to drive around looking for a grocery store or a safe place for me to eat–and allergy-friendly options are limited in Colby, Kansas.

Still, if he’d just said, “I’m sorry you can’t eat tacos or burritos or nachos, but do you mind if we stop at Taco John’s?” I would have been okay with it. Sometimes I just want confirmation from my husband and others that they get how food restrictions make life’s road bumpy.

Just don’t tell me to eat lettuce for lunch.

Why He’ll Never Suggest Lettuce for Lunch Again first appeared at Adventures of an Allergic Foodie.