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

Researchers Discover Cause of Eosinophilic Esophagitis

FROM FARE: Researchers discover cause of Eosinophilic Esophagitis (EoE). This means that new treatments may be just around the corner. Findings also help researchers understand other eosinophilic disorders and allergies in general. Very exciting news.

Researchers report that they have discovered the cause of eosinophilic eophagitis (EoE), a hard-to-treat food allergy. In EoE, large numbers of white blood cells, known as eosinophils, accumulate in the lining of the esophagus (the tube that connects the mouth to the stomach), causing chronic inflammation. Led by a team at Cincinnati Children’s Hospital, investigators have found a new genetic and molecular pathway in the esophagus. This discovery, reported online today in Nature Genetics, opens the door to new therapies for EoE, which has been diagnosed in a growing number of children and adults over the past decade.

The study found that EoE is triggered by the interplay between epithelial cells, which help form the lining of the esophagus, and a gene called CAPN14. When the epithelial cells are exposed to an immune hormone called interleukin 13 (IL-13), which is known to play a role in EoE, they cause…

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TSA Took My Lunch! Airports and Food Allergies

As I watched TSA swab my jar of peanutbutter, I thought back to the good old days–not the days before Sept 11 when airplane security was less rigorous, but back to the good old days when I didn’t have food allergies and celiac disease.  My biggest concern before becoming An Allergic Foodie was what shoes to pack. Now, I begin hyperventilating while making an airline reservation. What will I eat it? Where will I eat? What if I have a reaction? Should I just stay home with the dog?

I made many ignorant mistakes in my early days of traveling through airports with allergies.  Let me share a few.

Mistake #1. “Surely, I’ll find something in the airport to eat.”

Wrong. I’ve wandered through some of the largest airports in the U.S. and come up with zilch. Too many times I’ve drooled over my husband’s burger or pizza slice while eating a bag of potato chips and an overripe banana. On occasion I’ve hit the jackpot and found a restaurant with a menu I can eat off, but this is like finding a four-leaf clover in a field of dandelions.

Now I always carry a lunchbox with me and keep it by my side as if it’s full of diamonds. The plastic salad bowls with built-in ice packs are great for chicken salad and quinoa salad. I fill snack-sized bags with carrots, sliced peppers, and apple slices to replace the standard airplane pretzels.

Snacks for the airplane

Mistake #2:  “Peanutbutter is not a liquid.”

My husband travels every week for business and he even thought peanutbutter wouldn’t count as a liquid.  But it did.  Because it was the only protein I had with me, we allowed TSA to swab a spoonful. Now I know that if  I want to take peanutbutter, or applesauce, or yogurt, it must be under 3.4 ounces and placed in a plastic bag.

Mistake #3: “I’m starving! I’ll take a chance.”

It was midnight and there was only one restaurant open. Having to use sign language wasn’t making me feel too confident that the waiter understood “no dairy, no soy, no wheat.”  In retrospect, being hungry for another few hours would have been better than what happened next.

Mistake #4: “It’s a short trip; I’ll eat when I get there.”

Yeah, how many of your short trips have turned into 12-hour ordeals? And being irritable from low blood sugar and a grumbling stomach does not help one negotiate with the ticket agent. Don’t just bring one ham sandwich on gluten-free bread–bring two.  Statistically, you can pretty  much count on a flight being delayed.

United Snackpack

Snackpack from United Airlines: The only food An Allergic Foodie could eat was the hummus

Mistake #5:  “I ordered a special meal.”

We were going to Italy and I ordered a gluten-free/lactose-free meal, thinking there’d be something I could eat. What I didn’t know is that airlines can only put one code in for a meal: GFML for gluten-free meal and NLML for non-lactose meal.  There may have been a vegan option too, but those always scare me because I’m allergic to tofu (soy).

Somehow I got neither meal–maybe the two codes cancelled each other out? The flight attendants felt horrible and kept bringing me apples and bananas.  Fortunately, I had frozen some allergy-free turkey and ham with me that I nibbled on throughout the long flight. Beware:  You’ll have to throw away any food you take with you when you enter another country so eat it before you get off the plane.

Mistake #6: “Sure, I’ll have a second glass of wine.”

Hey, I got upgraded and the wine was free. I just couldn’t eat any of the foods in the snack pack. Actually the hummus was allergen-free for me, but my seat mate gave me the evil eye when I tried squirting it into my mouth. Eating wine on an empty stomach is never a good idea.

I’ve been traveling for six years now with food restrictions and it has gotten easier. Airports are offering healthier options including gluten-free menus, though I’m not sure how confident I am about the service folks being aware of  cross-contamination issues. Allergy-friendly snacks have started appearing in the convenience stores, too.

At the recent Food Allergy Research and Education conference, I had the opportunity to hear Kim Koeller of  Allergy Free Passport, share some tips for airline travel, staying in hotels and dining out with dietary restrictions.  She says, “There are three keys to safe travel and dining out: education, communication, and preparation.”

To learn more about traveling safely with celiac disease and food allergies, visit Kim’s website: Allergy Free Passport and check out her popular series “Let’s Eat Out Around the World Gluten and Allergy Free.”

TSA Took My Lunch! Airports and Food Allergies 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.