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.

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.

Food of My Dreams

I stuff fistfuls  of potato chips into my mouth.

Crunch. Crunch. Crunch.

“It’s four in the morning,” my husband says. “Are you eating chips?”

I swallow and look  down at the half-empty bag of Cape Cod Waffle Chips sitting between us in bed. Baffled, I set them on my nightstand, pull up the blanket, and go back to sleep.

When I enter the kitchen in the morning, my husband’s head is inside the refrigerator.

“I think you ate last night’s sausages,” he says.

My husband tends to be a bit OCD. He freaks out when a sock goes missing and the drink glasses aren’t ordered by size. I ignore him and make coffee.

“My sausages are gone,” he announces again.

Now I’m peeved that he’s making such a big deal about leftovers which are most likely behind the carton of eggs. I am not a morning  person.

I march over to the fridge and  pull out the drawer where I stored the baggy of sausages from last night’s meal. But only half  a sausage, the half that was somewhat burnt, remains. I’d put two and half links in there last night. I am sure of it.

“That’s weird . . . ”

Then I remember the predawn chip episode.

“Oh my God, I think I was sleep-walking and sleep-eating! Have I ever done that before?”

“Not that I know of.”  Content that he’s made his point, my  husband picks up the morning paper.

The sausages in question were grilled last evening for my husband. While they are gluten-free, the corn ingredients tend to make me ill.  I prefer Boulder brand sausages or chicken sausages from Al Fresco.

Evidently, I’m not that discriminating about brands or ingredients when I’m asleep, nor do I care whether the sausages are warm or cold.

Dream Food

At first, I’m embarrassed by my late-night munchies. Then it hits me.

I’ve deprived myself so much these last six or so years — passing on slices of birthday cake and Christmas cookies, avoiding crackers and cheese plates during cocktail parties, skipping on the movie popcorn but smelling it throughout the entire movie, sipping my water while the rest of the table chews on warm bread lathered in butter — why wouldn’t I raid the refrigerator or the pantry in a unconscious state?

In fact, why has it taken me so long?

I’ve woken in a sweat from dreams where I’ve eaten an entire chocolate cake with vanilla whipped cream frosting — I’m not only allergic to dairy and eggs and gluten but also vanilla. Still, I’ve never eaten in my sleep. Or even walked in my sleep.

I saw a TV show once about overweight people who have to lock up their food to keep them from eating in the middle of the night. Has my celiac disease and multiple food allergies created some sort of sleep-related eating disorder? Will my husband have to start padlocking his full-of-gluten-and-allergens food before heading off to bed?

After a quick Internet search, I discover that some people who are on diets may unconsciously eat at night. Eliminating gluten, dairy, eggs, soy, corn and so many other foods could certainly be called an extreme diet. That particular night I went to bed hungry because there’d been little for me to eat at a social event and once home I didn’t want to consume the extra calories before bed. With that in mind, it doesn’t seem all that odd that I  raided the kitchen at 4 a.m.

The funny thing is I could have grabbed some peanut M&Ms or some leftover pizza or even a brownie that was sitting on the kitchen counter. But I didn’t. I chose gluten-free sausages and gluten-free chips. I’m so accustomed to avoiding foods that will make me sick, I’ll even avoid them in my sleep.

The chocolate cake with vanilla whipped cream will remain in my dreams.

Food of My Dreams” first appeared at Adventures of an Allergic Foodie.

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Don’t forget to sign up for the Food Allergy Wellness Summit! Read all about this free online event here.

Live Courageously with Food Allergies: Online Summit Nov. 3-6

Avoid eating those foods.

That’s the only direction the doctor gave me when I was diagnosed with multiple food allergies and celiac disease as an adult. Little did I know then that eliminating dairy, gluten, soy, corn, and many more foods from my diet would be as challenging as climbing Pikes Peak with a backpack full of rocks.

The first thing I did after leaving the doctor’s office was go grocery shopping. Big mistake. Reading the back of packages, looking for processed foods that didn’t contain dairy, soy, or gluten, tears streaked my face. Even the organic health foods in the special freezer section contained soy! What was I going to eat? How would I feed my family?

Then came my first meal out. By the time I eliminated all my allergens, I was left with steamed broccoli and applesauce.  I’ll never forget my first plane trip after diagnosis when I didn’t pack any safe food.  All I could find to eat in the airport was a bag of potato chips.

Food Allergy Wellness Summit

I was alone with my food restrictions and stressed and maybe even a bit depressed. In my circle of family and friends, I was the only one with “food issues.” I felt like an outsider at social events and family gatherings and became somewhat reclusive. These weren’t my best years.

That’s why I’m so excited about the Food Allergy Wellness Summit, Nov. 3-6, that Crystal Sabalaske of Cluttershrink started. A busy mom with a house full of food allergies, Crystal dreamed up this Summit as a way to help families like hers. The Summit is online and free, so you can listen to the topics that interest you at your convenience.

You’ll learn how to:

  • travel and navigate social situations while staying healthy
  •  save money while buying gluten-free and allergen-friendly foods
  • send your kids to school and college with the know-how to keep them safe
  • apply updated medical expertise to help you manage your food allergies
  • reduce food allergy-related stress in family, friendship, and romantic relationships
  • enhance your well-being through nutrition
  • cook and bake sans allergens
  • organize your kitchen into a giant “safe zone”

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

I’m humbled to be speaking about college life with food restrictions with such a prestigious group of food-allergy experts, including:

This Summit is the guidance I wish I’d have after hearing the doctor say, “Avoid eating those foods.”

Sign up TODAY.

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

The Waitress Who Went to Bat for An Allergic Foodie

The Close-Minded Chef and the Waitress Who Went to Bat for Me

Just getting over a few days of food-allergy misery. I’ve been eating out a lot–just check my Facebook or Instagram photos!–so I’m not all that surprised a bit of gluten, soy, dairy, or corn snuck into my food. I guess I tempted the Food Allergy Gods one too many times.

This may sound slightly paranoid to some of you, but I kind of wonder if this time at this particular restaurant the chef didn’t intentionally leave an allergen in my order. It’s horrible to suspect someone who is preparing your food isn’t taking your food restrictions seriously, but we all know it happens.

The Close-minded Chef and the Waitress Who Went to Bat for Me

Here’s how the dining experience–er, dining disaster–played out. The waitress is terrific–very aware of my needs because she herself is gluten sensitive. She asks myriad questions and goes over the menu in detail. To be safe, it’s decided I’ll order plain grouper and steamed broccoli and cauliflower. The table will share crab legs for an appetizer, butter on the side.  The only unanswered question is what kind sauce of the six offered I can have on my fish. She goes back to the kitchen to find out.

When she returns, her face is flushed  She explains that the head chef is “old school” and believes the front of the house–the waiters and servers–shouldn’t converse with the back of the house–the chefs.  I thought this only happened in the movies! How in the world is our waitress suppose to find out if  food is allergen free without talking one-on-one with the person preparing the food?

“I told him you’re not going to have to use an epipen on my watch!” she says. Her pen flies up in the air like a sword.

This waitress went to battle for me. How awesome is that? But that’s also why it makes getting sick from this meal even worse–and why I suspect foul play.

You’re probably wondering why I didn’t just leave the restaurant then. In hindsight, I should have. But it was late, few other restaurants were opened, and we were so enjoying this view of the full moon.

IMG_2772

So I ate my plain grouper that was nondescript, which was fine if it meant not getting sick.

Of course, you now know how that panned out.

While rolled up in a ball on the bathroom floor, I rehashed that meal in my head. I pictured the chef ignoring that lovely waitress. I wondered what he missed–or added–to my order that made me so sick. I kept asking myself, If this chef had a wife or a child with food allergies, how would he feel about interacting with the front of the house then?

I’m often quick to blame a waiter for leaving croutons on my salad or butter on my vegetables, but maybe I don’t know what he is dealing with behind those swinging steel doors. When a hierarchy exists in restaurants–when good communication between all food staff members doesn’t exist–those of us with food restrictions pay the price.

The only time I’ll return to this restaurant is to see the sunset. I’m pretty sure this chef could care less about losing me as a customer, but the waitress may. She did her job exactly right. I’ll give her a high-five the next time I see her.

The Close-Minded Chef and the Waitress Who Went to Bat for Me first appeared at Adventures of an Allergic Foodie.