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.

Breaking Up with Dr. Oz

Breaking Up with Dr. Oz

Dear Dr. Oz,

After thousands of afternoon dates, it’s time for us to go our separate ways.

You have lost my respect.

Like Dorothy who discovers the wizard is a fake, I have discovered you, Dr. Oz, are not the wizard of medicine you claim to be.

YOU CALLED A GLUTEN-FREE DIET A SCAM ON NATIONAL TV!  Millions and millions of people heard you! Including a few of my family members who think my celiac disease is all in my head. Thanks, Dr. Oz.

The audience even started cheering as if to say, “I knew all those gluten naysayers were idiots! Give me a slice of pizza now!”  Yes, you tried to cover up your error by saying “there are a lot of folks who have big time problem with gluten so I don’t have a problem with people who don’t like eating gluten foods…”

Don’t LIKE eating gluten foods! Huh?  I would LOVE to eat gluten foods–it’s my body that won’t let me!  Coincidentally I got “glutened” at a restaurant last night. Imagine a brick making its way through your digestive system. Today, I tried to run some errands, but I was so lethargic I was afraid to drive. It will be at least a week until I feel normal again.

This, Dr. Oz, is what living with CELIAC DISEASE is like. It is not a scam. Is is not BS. And when people hear a doctor call a gluten-free diet a scam, you hurt people like me and my son and the one in 133 of us with celiac disease. Not to mention the thousands and thousands of others with non-celiac gluten sensitivity.

That is why I am breaking up with you, Dr. Oz.

Don’t even think of sending me flowers.

Breaking Up with Dr. Oz” originally appeared at Adventures of An Allergic Foodie.

Celiac Disease Wasn’t a Part of the College Plan

Within weeks of my celiac disease diagnosis, I had my two sons tested. Both grew up with “sensitive stomachs” so I was surprised—yet relieved—when their blood tests came back negative for CD. I knew firsthand the difficulties of cutting gluten out of a diet (along with soy, dairy, corn and a host of other foods for me), and I was glad my kids could continue their youth grazing on bagels, pizza, chicken nuggets, and burgers.  While my oldest is lactose intolerant, he simply takes a pill to help him digest dairy.

Unfortunately, there are no magic pills for those of us with celiac disease.

Fast forward five years. Sons are in college.

college life

The youngest comes home for Thanksgiving break looking gaunt. He blames the cafeteria’s food, insisting they put laxatives in the food to keep kids from getting food poisoning (a popular urban myth, I learn through a quick investigation on the Web).  My son’s had a bad cold most of the semester and no amount of sleep makes him feel rested.  (This sounds all too familiar, I think.) When he says his diet consists of bagels, sandwiches and pizza, a red flag not only goes up but waves crazily in the air.  I suggest he eliminate wheat from his diet and see if he feels better.   But he shrugs me off; did I mention he’s nineteen? 🙂

By Christmas break, he’s even thinner, paler, more exhausted, says he feels achy and dizzy much of the time.  Without any prompting from me, he decides to go a few days without wheat. Voila!  Practically overnight, he feels new and improved. One mistake–oysters Rockefeller with a smattering of breadcrumbs on New Year’s day–sends him back five steps, and we are both positive he’s inherited my CD genes (I have the pleasure of having both the DQ8 and DQ2 genes).

Surprisingly, neither my son nor I pout or panic. Okay, he pouts a little when he realizes beer and pizza are officially off-limits (he’s a college student and a guy after all), and I feel some mother’s guilt for passing my defective genes onto my child, but we’re both optimistic that he’ll enjoy college much more when he says good riddance to grains.

GOODBYE GLUTEN, HELLO GLUTEN-FREE!!!

Goodbye gluten!Hello Gluten-Free!

 

Since my son has been a part of my gluten-free lifestyle change from the start, he already knows all the rules, such as never put a wheat-contaminated fork into a shared serving dish and use a separate toaster for GF toast.  He likes the staples of a celiac’s menu: quinoa, hummus, fresh vegetables and fruit, meat and fish, rice bowls, and stir-fry.  He knows to check the ingredients on everything from cold medicines to gum and to stick to the golden rule: If it doesn’t say gluten-free on the package, don’t eat it.  After years of watching me struggle in restaurants (I’m a much better advocate for my family than for myself), I am certain my son will articulate clearly with wait staff.  Are the french fries cooked with breaded foods?  Please don’t just remove the croutons on my Caesar salad; make me a new salad. Can you grill my burger on foil?

A sign you don't see often.

A sign you don’t see often.

Still, I worry.  Going gluten-free in college won’t be easy.  Like many universities, his college food service is not allergy-friendly (past parent visiting days confirmed that), and there are few restaurants within walking distance.  But my boy already has a plan: buy his own bread and get the GF-free meat and cheese from the school deli, make weekly trips to the grocery store, keep his room stocked with gluten-free snacks.   I can’t help but feel proud.  Without any objection, he takes the fastfood menus I’ve printed out and circled the GF foods.  (Yes, we know the contamination risks at such places, but a guy’s got to eat!).  Before he goes back to school in a few days, I’ll take him to our local healthfood store and show him myriad GF options that now line the shelves.  And, of course, I’ll send monthly gluten-free care packages; I’ve already made a favorites list on my computer of GF mail order companies.

Celiac disease wasn’t a part of my son’s college plan–or my plan for him. But as he’s learning, life is full of bumps.  I’m just glad he’s prepared to take this one head on.

HEalthy Life

For more reading:

College Student with Celiac Blog

A Guy Talks about Gluten

Growing Up Gluten Free

Celiacs at College

Celiac Students take College to Court