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.

Musings and Morsels 11-07-14

What a week! I spoke during the online Food Allergy Wellness Summit on a topic close to my heart: Living with food restrictions in college. As a nonfiction writer, I love to research and I read everything available to prepare for this interview. I have enough material to write a book! Well, at least a few blog posts.

I’d like to thank the National Foundation for Celiac Awareness and Food Allergy Research and Education for providing PDFs of their college-related handouts. Also, my appreciation to Well Amy, Surf Sweets, and Carrie S. Forbes, author of The Everything Gluten Free College Cookbook, for generously donating giveaways for those who signed up to follow this blog. (A little bribery never hurts. Wink, wink.)  Lastly, kudos to Crystal Sabalaske of Cluttershrink for organizing this valuable summit to help families with food allergies and for including me with such an impressive list of speakers.

Musings and Morsels 11-07-14

Last night I grabbed a glass of wine and a Daiya pizza–by the way, the crust has been greatly improved!–and listened to NFCA’s webinar on Gluten-Free Labeling with Tricia Thompson, RD. She’s the dietitian behind Gluten Free Watchdog, which if you aren’t following you should be! I learned so much about the FDA’s gluten-free labeling rules and I’m going back today to re-listen. It’s a lot to digest (pun intended)!

Good News: NFCA will be providing the webinar on their website. so you can listen, too. Check here later today.

On a sad note, this week I also learned a nonprofit task force I’ve co-chaired with a good friend would be ending. For 12 years my friend and I provided support to high-risk pregnant mothers on bed rest in local hospitals. We’d both been on bed rest during our pregnancies, and I delivered a baby 12 weeks early. We were the substitute families for these women whose families weren’t always available (we live in a military community). It’s hard to have the door close on something we believed in so much.

But as the saying goes–when one door closes, another opens. I truly believe helping others with celiac disease, food allergies and EoE is my new calling. This blog is just the start. If you have ideas for how I can do more to help you, please don’t hesitate to contact me!

Okay, enough musings–on to a few morsels!

As I’ve mentioned more than a few times here, I react to soy worse than any of my other allergens. So when I saw Soy Allergy Survivor’s helpful one-page soy list I immediately printed it. Because I have so many allergies including corn and dairy which can hide in many, many foods, I always appreciate guides like this one.

Musings and Morsels 11-07-14

Speaking of hidden allergens and labeling, which seems to be a theme this week, a new FDA consumer report, Finding Food Allergens Where They Shouldn’t Be, says the FDA is working to reduce undeclared allergens on labels by:  researching the causes of these errors; working with industry on best practices; and developing new ways to test for the presence of allergens. From September 2009 to September 2012, about one-third of foods reported to FDA as serious health risks involved undisclosed allergens. This is frightening, to say the least. You can help the FDA by reporting  food-allergic reactions to the FDA consumer complaint coordinator in your district. 

I’ll end with a little gossip. Who doesn’t like gossip? A little bird told me that the Food Allergy Bloggers Conference would be held in a different state than Nevada next year. Turns out it’s true! Pop on over to their Facebook page to learn more. If you aren’t familiar with FABlogCon, it’s a wonderful conference and opportunity to connect with the food allergy community and learn from experts. It’s for everyone–not just bloggers.  I, for one, am pretty excited about a new venue in a new state.  Come to think of it Colorado would be an excellent choice . . . hint, hint.

Musings and Morsels 11-07-14 first appeared at Adventures of an Allergic Foodie.

An Allergic Foodie will share tips for the college celiac on Nov. 6, 2014 during Food Allergy Wellness Summit

FOOD ALLERGY WELLNESS SUMMIT: COLLEGE 101

My husband and I drove through Nashville this past weekend and stopped to have dinner with the college boy. You’ve heard me refer to our son often as the  “College Celiac.” Yes, he inherited his mom’s celiac genes, something we discovered after he left home and went far, far away. Actually, he believes the amount of wheat he ate during freshmen year–pizza, pasta, bagels, cookies–triggered his celiac. He’s probably right.

Over gluten-free appetizers, I asked my son if he ever cheated and ate a slice of pizza or a cookie. Okay, I was really wondering if he ever slipped up and had a beer at a party. Perhaps it was the dozen of red solo cups and the beer pong table in his rented house that made me wonder this.

“I’m never even tempted,” he said. “It’s not worth feeling stupid all week.”

Food Allergy Wellness Summit: College 101

My son’s worst celiac symptom is brainfog. Feeling lethargic and air-headed can obviously make learning and studying hard. Trying to adapt to college life is challenging enough without having to worry about eating the wrong foods and getting ill.

And oh how I hated those terrible middle-of-the-night phone calls when he was doubled over in pain. I wondered if it was truly a gluten reaction or if he had appendicitis or food poisoning. Should he go to the ER, or wait it out?

When  he ate in the school cafeterias, he got glutened often. We tried moving him to a suite with a kitchen and that proved to be even worse–the other boys left half-eaten pizza and breadcrumbs everywhere! Moving to a house last year helped, but he still keeps a toaster in his room and gluten-free foods under his bed.

We’ve both learned a lot in the last four years. So when I was asked to speak about our experience for the FOOD ALLERGY WELLNESS SUMMIT–a FREE ONLINE 4-day event with 12 food allergy experts–I jumped at the chance to help other parents and students about to embark on the college journey. There seems to be a wealth of information out there for younger kids with food allergies and celiac disease, but not so much for the high school and college student.

Surviving College with Food Allergies or Celiac

If you have a child with food allergies, or you are a high school student preparing for college, please join me on November 4 for “I Can’t Eat That: Living with Food Restrictions in College.” I’ll offer lots of advice on everything from choosing the right school to preparing to leave home to eating and socializing on campus.

After listening to my talk, you’ll  receive TWO FREE DOWNLOADS specific for college students from the National Foundation for Celiac Awareness and Food Allergy Research & Education. Plus you’ll have a chance to WIN THREE GREAT PRIZES  perfect for the college student: a $25 gift certificate to Well Amy; an assortment of treats free of the top ten allergens from Surf Sweets; and an autographed copy of The Everything Gluten-Free College Cookbook by Carrie S. Forbes.

An Allergic Foodie will share tips for the college celiac on Nov. 6, 2014 during Food Allergy Wellness Summit

SIGN UP FOR THE FOOD ALLERGY WELLNESS SUMMIT TODAY!

Food Allergy Wellness Summit: College 101 originally appeared at Adventures of an Allergic Foodie