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.

___________________________________

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

* * *

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.

An Allergic Foodie Admits Mistakes

An Allergic Foodie Admits Mistakes

At the risk of losing a few readers who rely on me for gluten-free and allergy-friendly wisdom, today I’m coming clean.

Ready?

An Allergic Foodie has made some mistakes. Some really, really bad mistakes.

To my defense, that little piece of paper the allergist handed me listing twenty foods that may contain gluten was a joke. Please also keep in mind that in addition to having to eliminate gluten from my diet due to celiac disease, I am also allergic to soy, dairy, corn and a host of other foods and spices. (Like vanilla and nutmeg. Who’s allergic to vanilla and nutmeg?)

Eliminating multiple foods from one’s diet is NOT easy. Especially when you don’t have any nutritional science background (unless you count several attempts at Weight Watchers) and your cooking skills involve opening a box and adding water.

Here are a few of my favorite blunders (I find it fun to sing this line to the tune of “Here are a few of my favorite things”):

I thought “Wheat Free” meant “Gluten Free.”

Yes, I ate several packages of Newman’s Figs before realizing they were full of gluten. I mean if you can’t trust Paul Newman, who can you trust?

An Allergic Foodie Admits Mistakes

I followed the three-second rule: “Those croutons were only on the salad for three seconds!”

Doesn’t matter!  A nanosecond of cross-contamination will make me sprint to the restroom as if my feet were on fire.  By the way, at Outback Steakhouse “Sheilas” means ladies’ restroom–found that out the hard way.

Didn’t know that spelt was gluten.

Spelt Bread is NOT gluten FreeThe week I found out I had celiac disease I bought a big loaf of spelt bread.  After all,  it wasn’t “Wheat Bread” so it must be gluten free.  And it tasted like cardboard,  so it must be gluten free.  Spelt caused me to crawl under my bed for seven days. Not exaggerating.

Didn’t know barley was gluten.

Put this soup on your MOST NOT-WANTED LIST. Do it now.

People with celiac disease should stay away from barley!

I skimmed ingredient lists.

This was back in the days when I thought I could buy foods that contained more than five ingredients. I also hadn’t yet accepted that I needed reading glasses (now I keep a magnifying glass in my pantry!).  I also hadn’t gotten my PhD in nutritional studies. Okay, I still don’t have a PhD, but I think I’m pretty darn smart about food allergies and celiac disease. Read my post What Is This in My Food?Maltodextrin.  Smart, huh?

I was shy in restaurants.

I’m an introvert. I don’t like to make a fuss. I don’ t like to draw attention to myself. These are not good characteristics for someone who eats out a lot and has many special dietary requirements. Here’s how I ordered the first few times I ate out after diagnosis:

“Just bring me a vegetable salad with olive oil and lemon, no bread, no croutons.”

Here’s how I order now:

“I have allergies and celiac disease. So no gluten, wheat, soy, dairy, or corn.  Did you write that down?  Let’s see, I’ll have the burger with no bun, no cheese, and please don’t cook the meat in butter, and use a piece of foil on the grill. And can you make sure the fries aren’t cooked with other fried foods, or in corn or soy oil.  If it says vegetable oil, it may be soy oil.  Read the label. Do you make your catsup in-house? I can’t have corn syrup . . .”  You get the drift.

I paid a “Wellness Coach” $500.

C’mon, who wouldn’t pay $500 to rid themselves of multiple food allergies and celiac disease? After my first appointment, I got home and checked the ingredients of the Miracle Shake that was going to cure my leaky gut.  Contained gluten and vanilla!  I’d been scammed! Any one out there interested in buying a case of  a Miracle Shake that will cure your celiac disease and/or food allergies?  I’ll throw in the box of Magnetic Clay Detox Bath Beads that will also rid your body of evil toxins.  (Note: There are some good wellness coaches out there: just make absolutely sure she/he is qualified and has a background in food allergies and celiac disease.)

I stopped drinking vodka.

Stupid, stupid mistake. People who I called friends told me vodka was made from wheat, not from potatoes as I’d always thought, so I tearfully said goodbye to martinis. But then I read on a reputable website that distilled liquor was okay for celiacs. Hooray! I celebrated with a Cosmo or two or three (I know, Cosmos are so outdated, but I just can’t find a martini I like better. Suggestions?)

People with celiac disease can drink distilled liquor.

A side note: Chopin Vodka is made entirely from potatoes and has become my vodka of choice.  (Okay, so maybe I didn’t give up ALL vodka in those early days).

I’ll stop here because the experts say blog posts should be kept short to retain reader interest. The point to my admitting these early-diagnosis mistakes is this: Learning to live with celiac disease and food allergies takes practice, patience, perseverance and maybe a pair of reading glasses.  But in time, you will become a pro–and you will start feeling good!

If you liked An Allergic Foodie Admits Mistakes, you may like  To Eaters of Everything and  What Restaurants Did Wrong in 2013.

An Allergic Foodie Admits Mistakes originally appeared at Adventures of an Allergic Foodie.

People Who Don’t Have Eating Issues Should Butt Out

On New Year’s Eve, Ox Restaurant, an Argentina steakhouse in Portland, posted an Instagram photo of myriad sticky notes with dietary restrictions. Eater published the photo under the headline This Is Just a Nightmare of Restaurant Customer Allergies.  

Photo from  Ox Restaurant in Portland on Instagram, 12/31/2013

Photo from Ox Restaurant in Portland on Instagram, 12/31/2013

I was all ready to read yet another negative review of customers with food allergies, but that wasn’t the case. What Ox owners Greg and Gabrielle Quiñónez Denton wrote on their Instagram post, and Eater reported, was that the special orders were “nothin’ special.”

Nothin’ special!

Keep in mind, this was a ridiculously busy night–New Year’s Eve! And the restaurant was offering a prix-free menu. Personally, with my myriad allergies and celiac disease, I would never ever expect a restaurant to “redo” a prix-free menu for me on one of the busiest nights of the year. In fact, I called five restaurants weeks before New Year’s Eve to find one that was offering a full menu and then I asked if they could accommodate me.

I’m nice that way. Evidently not everyone in Portland with food issues feels the same way I do. Again I say, Bravo Ox!

Here’s the part that’s gonna make you mad  . . . the comments that followed Eater’s brief article.

Oh where should I start?  Maybe with this one . . .

Comment #1: The percentage of gluten allergies here is about 20%, the reality is about 1.5% in the country. So most of them must be a choice. Next time choose to stay home.

Not sure where this guy got his numbers, but I’ll go to the National Foundation for Celiac Awareness for mine: “One out of every 133 Americans has celiac disease. That’s equivalent to nearly 1% of the U.S. population. However, 95% of people with celiac disease remain undiagnosed or misdiagnosed. This means that up to three million Americans have celiac disease and only about 200,000 know they have the condition.”

Wow. No matter how many times I hear those statistics I’m still astounded, and I’m always left thinking how many people are suffering and not knowing why.  Maybe they’ve figured out they should eliminate gluten from their diet before a doctor told them to.  They made a choice not to eat gluten. Therefore, according to the guy above, they should not dine out.

For so many of us eating gluten is not a choice but a medical necessity. I would like to think many restaurants are glad I choose to spend my hard-earned cash at their establishments.

Comment #2: They should go to the hospital not a restaurant. People that haven’t worked in a restaurant should not eat in one.

I worked at Friendly’s in high school so I guess I’m qualified to eat in a restaurant. What a weird way to think. I haven’t worked in a clothing store, so I guess I shouldn’t shop in one. I haven’t worked in a grocery store, so I guess I shouldn’t buy groceries. I’m just going to stop here.

Comment #3: What’s the most annoying is that most of these are preferences, not allergies.

Huh? More than 170 foods are known to cause allergic reactions. People can be allergic to odd foods like lemon and pepper and lentils; I know people who are allergic to all of these. I happen to be allergic to asparagus and capers and nutmeg. I usually don’t list all my allergies when I order at a restaurant (we’d never get to eat!), but I do request no asparagus because it’s such a common side. I’m sure waitstaff think I just don’t like asparagus, but the reality is asparagus makes me really, really sick.

Comment #4: [They’re] just begging to have their food spit on. The entitlement mentality of modern US diners is just out of control. Stay at home if you have so many stupid allergies, no one really cares.

This person is just heartless and mean. Obviously he/she has never met someone who has gone into anaphylaxis, or had a child double up in pain because he ingested wheat. According to the Centers for Disease Control, there has been a 50% increase in food allergies since the 1990s. If everyone stays home, how will restaurants survive?

Comment #5: I waited tables in the early nineties with a tyrant of a chef; he would not do special orders and if we asked, he would go berserk. I totally understand the side of the customer saying, we’re paying we should get what we want. But then there is the side of the restaurant, one special order per server upsets the whole flow of the kitchen. People take their demands too far these days.

Did you hear that people? You are taking your  food allergies and celiac disease demands too far!  You are upsetting the flow of the kitchen. How dare you!

Final comment from an allergic foodie: People who don’t have eating issues should butt out.

People Who Don’t Have Eating Issues Should Butt Out” originally appeared at Adventures of an Allergic Foodie.