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.

Erica Brahan, a high school senior writes honestly about living life with food restrictions

Food Restrictions: A Teen’s Survival Guide

I’ve been feeling pretty cool lately because quite a few high school and college kids following me on Instagram and Twitter.

Wait! It  just dawned on me that I hide my face behind a lemon with sunglasses. So maybe the girls think I’m actually a hot hipster guy and the guys think I’m one of those size-2 cross-fit smoothie-drinking girls. But then again, if I was a size-2 cross-fit girl I wouldn’t be using a lemon’s mug shot, would I?

None the less, it sure makes me feel good when people my kids’ ages want to see the photos of food I post or the info I tweet. I was super flattered when a high school senior named Erica Brahan asked me to review an e-book she wrote called  A Teenager’s Perspective on Food Restrictions: A Practical Guide to Keep from Going Crazy.

Poor Erica probably thought I’d never actually review it because I’ve been crazy busy with my social media addiction. But when I finally opened the pages of Erica’s e-book, I was hooked.

A Teen's Perspective on Food Restrictions

Erica has an upbeat attitude about life with multiple food restrictions, yet she doesn’t sugarcoat the very real challenges young adults like her face. While food restrictions are difficult at any age, fitting in is especially important to high school and college students. Erica writes,  “When eating other than the standard American diet, teens stand out and may be labeled as different or not normal. When you don’t fit in there is typically a desire to find others like you, but there is not usually a strong and united support system for teens with food restrictions.”

To help teens deal with food allergies, celiac disease, or other special diets needed for health problems, Erica asks readers to answer probing questions such as What are my dreams? Is my current health preventing me from achieving them?  She then provides concrete ways to overcome obstacles.  Among topics discussed are friends who don’t understand, dating difficulties, eating in school cafeterias, and choosing colleges. Readers can also find support and encouragement from others’ stories.

While A Teenager’s Perspective on Food Restrictions is aimed at young adults, parents and other family members as well as teachers and counselors can learn from Erica’s experiences and honest writing.  You can purchase her book at Amazon and Barnes and Noble, or from her website.

Other Resources for Teens (and Their Parents)

Erica’s blog: Edible Attitudes

Gluten Away (a teenager’s blog about celiac disease)

Teens with Food Restrictions Facebook Group

FARE Resources for Teens

Food Allergies and Anti-Bullying

Celiac Disease and College

Managing Food Allergies at College

Help My Teenager has Coeliac Disease! 

On Twitter: @teenallergies, @celiacteen, @coeliacteens

Please let me know about any other resources for teens and young adults.

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Food Restrictions: A Teen’s Survival Guide first appeared on Adventures of an Allergic Foodie

Symptoms and Celiac

Not All of Us Want to Share Our Symptoms

I explained to the white-coated chef at the Marriott Residence Inn that I had celiac disease and a bunch of food allergies so I couldn’t eat the potatoes cooked in butter or the eggs or the yogurt or the cereal.

While I scooped fresh blueberries from the waffle station to top my Bakery on Main oatmeal, she circled me like paparazzi around Gwyneth Paltrow.

I knew what was coming.

“What are your symptoms?” she asked loud enough to make my husband cringe.

I looked around the room full of men and women in business attire and families with young children on school break and said softly, “Unpleasant ones.”

Now I have no problem talking about celiac disease and food allergies. After all, I spill my guts in this blog (pun intended). Of course, you may  notice I hide behind a lemon in sunglasses.

But if I’m in public, I’d rather not talk about my bathroom habits. And I’m almost positive these people eating their bagels and cream cheese didn’t want to hear about my flatulence and IBS.

This gal was relentless. “How unpleasant?”

Really? You really want me to talk about my diarrhea and painful cramps before I’ve even had a cup of coffee?  I glared at her. “I experience gastrointestinal issues.”

She got it. Finally.

Blushing, she said, “Oh, I just asked because I have eczema and people tell me maybe I should go off gluten.”

Why didn’t she just say that!

“Have you gone off gluten to see if it helps?”

“I probably should,” she said. “But I couldn’t possibly live without bread and pasta.”

May is Celiac Awareness Month

Let me share another story.

We are at a restaurant and the waiter asks what kind of allergy I have: “Is it the kind that makes you run to the bathroom, or run to the hospital?”

I know what you’re thinking: I’m making this up. I wish!

I could have told this waiter–who happened to look like one of those bronzed guys with the abs of steel in middle-of-the-night infomercials–if I eat even a crop of the sauce with the cream, I will spend the next three days glued to the toilet seat.  I could–and probably should–have told him it didn’t matter what kind of allergy I have–both symptoms are bad. If I continue to get sick from restaurants like his, I could get cancer.

Actually, I can’t remember what I said.  I’m pretty sure I went to the bar and ordered a goblet of wine, and my husband ordered me a plain filet with olive oil, salt and pepper and steamed broccoli (my go-to-allergy-safe meal).

Food Allergies have many symptoms

Now some people–I can think of several of my fellow bloggers–can easily speak out about their bathroom habits. Erica Dermer has a chapter in her book, Celiac and the Beast, titled “Let’s Talk About Butts: A Story of a Girl, Her Rectum, and the Scope That Loved Her.”  Erica probably wasn’t raised by a mother who ordered “chicken chest” for dinner, as I was.

Ironically, Erica doesn’t have the nasty GI symptoms that many of us do. In the first line of her book, she says, “I wish I could tell you that if I ate a bowl of Pasta Roni right now, I would swiftly crap my pants. I only wish this because then you would plainly see that something is very, very wrong with my insides.”

Erica goes on to say that her symptoms appear days or weeks later–sores in her mouth, a swollen tongue, extreme tiredness. “I experience the same life post-gluten as every other celiac,” she writes.

While we all are in this together, our symptoms may be similar and different. Celiac disease has over 300 symptoms! 300!  Throwing food allergies into the mix only complicates matters.  Your autoimmune system reacts to proteins in foods differently from my autoimmune system.

So when a waiter, a chef, your spouse’s boss, or someone in the grocery store checkout line who sees you buying Udi’s gluten-free bread asks you what your symptoms are, feel free to share if you like. But I prefer telling them to go to one of these websites:

Food Allergy Research & Education (FARE)

Fare has recently launched SafeFare, a resource center to make dining out safer

National Foundation for Celiac Awareness

Make sure you print out NFCA’s Celiac Awareness Month 2014 Toolkit

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May is Celiac Awareness Month, and Food Allergy Awareness Week starts May 11, 2014.  Please share information about celiac disease and food allergies–especially symptoms so people will stop embarrassing An Allergic Foodie.

Not All of Us Want to Share Our Symptoms first appeared at Adventures of an Allergic Foodie.