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.

5 thoughts on “Questions about Celiac Disease? A Helpful List

  1. What a helpful list! I’ve forwarded it to my neighbor whose brother-in-law was just diagnosed with celiac disease. Thank you!

    I have started attending my local celiac support group on occasion. I went years ago after my son’s dx. I do find that there are a lot of silver haired people as well! Thankfully, my city’s local group has a great on-line presence in the form of a very active Facebook group. It’s been immensely helpful. For local resources on restaurants and grocery stores, a local support group can do a great job.

    Like

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