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.