Food Allergies have many symptoms

We Didn’t All Grow Up with Food Allergies

Sitting at the hotel bar during a recent food allergy conference I was surprised–no, shocked– when two mothers of food-allergic children told me that adults shouldn’t need help coping with their allergies. They were wondering why I was at the conference. Now before you get angry, let me explain their side. They assumed all adults with food allergies had developed them as children. Hence, by adulthood, food-allergic folks should be experienced–physically and emotionally–at handling restrictions and reactions.

Imagine! I had no idea some people thought this way! Of course, I quickly took this opportunity to tell them how wrong they were.

I explained people can develop food allergies and celiac disease and other health issues requiring food restrictions at any time in life. I shared that my symptoms started in my late thirties, though it took nearly ten years to find out multiple food allergies, celiac disease, and eosinophilic esophagitis were the cause.

My kids ate everything–and I mean everything!–when they were little. Their food issues developed as teens. My oldest son realized dairy and eggs were off-limits in high school, and my youngest started showing signs of celiac disease his first year in college. I also mentioned one of my adult friends couldn’t eat dairy and gluten due to Crohn’s Disease and another developed life-threatening reactions to many foods in her thirties. Oh, and by the way, one of my favorite attendees at the conference was a spunky senior citizen with over 40 recently diagnosed food allergies and intolerances.

Adult with 40+ Allergies

After we were all on our second glass of wine, I may have suggested that getting diagnosed with food allergies as an adult may actually be more difficult than being diagnosed as a child. What I was trying to say is the food-allergic adults needed the conference as much as the parents of food-allergic kids did.  Figuring out all the foods containing soy, dairy, gluten and corn fell on my shoulders–I didn’t have mom and dad to guide me. My young adult sons taught themselves how to negotiate school cafeterias and participate in social activities with peers who didn’t get that food could make them horribly sick. My oldest even figured out how to eat dairy- and egg-free in Italy, the land of pizza and cheese.  After years of not needing to worry about allergy-friendly menus, or planes with peanuts, or explaining to family members why they couldn’t double-dip, becoming  “the weird person who can’t eat anything” is like being a foreigner in a new land–yet the doctors don’t offer any counseling.

I think the women were kind of tired of me by then. They wanted to get back to talking about preschools and camps. But this conversation opened my eyes to how some people may view adults with food allergies.  Will a waiter or chef who thinks I’ve managed celiac disease all my life  have a false sense of security that I know what I’m doing when ordering my food? Will my co-workers and friends not believe me when I become sick from food; after all, shouldn’t I know how to eat by now? My own mother doesn’t understand my health issues because I didn’t have food allergies as a child, so how can I expect strangers to understand?

Fortunately, there are those out there who do get it. The next few blog posts will focus on resources for teens and adults, starting with Erica Brahan’s “A Teenager’s Perspective on Food Restrictions: A Practical Guide to Keep from Going Crazy.” Gotta love the title.

Please be sure to let me know of any resources I miss. And remember, I do know how difficult a later-in-life diagnosis is–I am here to help.

We Didn’t All Grow Up with Food Allergies first appeared at Adventures of an Allergic Foodie.

Some Restaurants Shouldn’t Have Gluten-Free Menus

Ten days ago I posted a photo on Instagram of an awesome gluten-free pizza using Udi’s Gluten-Free crust that I enjoyed at Flatiron’s American Bar and Grill in Colorado Springs. I hadn’t eaten at this restaurant for over six months because all I could ever order was salad. You all know what that’s like.

Some Restaurants Shouldn't Have Gluten-Free Menus

So imagine my surprise when I learned Flatiron’s now had a huge gluten-free menu that could also accommodate my dairy and soy and corn allergies. We’d just picked the College Celiac up from the airport and I was thrilled we went to Flatiron’s because he could eat safely. I even tweeted my appreciation. The restaurant is locally owned and I like to support neighborhood businesses.

Last night I was craving that pizza. So my husband and I went to Flatiron’s and I ordered the exact pizza I ordered ten days earlier: Veggie pizza but substitute the poblano peppers and garlic for pepperoni. I clearly stated that I was celiac and needed the pizza to be as clean as possible.

The pizza arrives with cheese, which was entirely my fault. I sometimes forget pizza typically comes with cheese! I send the pizza back and the next one arrives with no cheese and no pepperoni. Overcooked, barely any sauce, it tastes awful. And I know that Udi’s Gluten-Free pizza crust tastes good when cooked correctly.

I whip out my camera and show the ten-day-old Instagram pizza photo to the manager who says matter-of-factly, “That doesn’t look like our gluten-free crust, it looks like our regular crust.”

Here’s a photo of the one I got last night. The only difference I see is this one is overcooked and lacking sauce and pepperoni.

Bad Gluten-Free Pizza at Flatiron's

I turn to my husband. “So I guess I can eat gluten now.” I was being sarcastic. It was late and I was hungry.

The manager says, “Maybe you’re not allergic anymore, I’ve heard that can happen.”

I just stared at my husband with my mouth wide open. Here is a manager of a restaurant with a huge gluten-free menu–they even advertise 20 percent off gluten-free items on Thursdays–who clearly has no understanding of celiac disease or a wheat allergy.

I should have said something like, “Celiac disease is an autoimmune disease with over 300 symptoms and it is not reversible. The only cure is to not eat gluten.” But at that point, I just wanted to go home and get in my jammies and heat up a can of soup.  We left cash to cover our wines and bolted out the door.

Of course, as soon as I got home I tweeted about my bad experience.

People jumped to my defense and were appalled by the manager’s ignorance.  I just love my Twitter friends.

So here is what I woke up this morning thinking: If a restaurant is going to offer a gluten-free menu, every single employee must be educated and trained. They must understand what celiac disease and food allergies are, and why preventing cross-contamination is so important. They must understand that one wrong ingredient can be life-threatening. They must take their customers’ health concerns seriously.

Otherwise, don’t even bother offering a gluten-free or allergy-friendly menu.

I’d rather order that boring old salad than risk getting sick. I certainly don’t want my youngest son with celiac disease and my oldest with dairy and egg allergies to think they are ordering safely when they aren’t.

Ten days ago, I thought I’d re-discovered a restaurant I could eat in. Obviously I was wrong. Just because a restaurant has an extensive gluten-free menu doesn’t mean you should eat there. I’m pretty sure this restaurant, like so many others, jumped on the gluten-free diet movement to make a profit. If they are serious about serving their celiac and allergic customers, they’ll immediately remove the gluten-free menu while they get proper training for the waitstaff and the chefs and the managers. This experience makes me question every restaurant’s reason for offering gluten-free choices–unless I see a certification from a third-party or talk to a manager who clearly “gets it,” I won’t feel safe dining out.

Here’s the other thing that bothers me about this whole experience. As a blogger and social media guru, I recommended this restaurant to my celiac and food-allergic brothers and sisters. Less than two weeks after doing so, I realized this is not a safe restaurant to eat in. So should I stop reviewing restaurants and posting food photos on Instagram? I’m still trying to figure this one out.

Oh, and by the way, I did get sick the next morning–even after eating one small piece of the pizza.

Some Restaurants Shouldn’t Have Gluten-Free Menus appeared first on Adventures of an Allergic Foodie.

I Have Exciting News! (Hint: Big Ears)

My sons have shown very little interest in my blogging–except for when complimentary allergy-friendly cookies arrive in the mail. My husband likes to good-naturedly poke fun at my blogging at cocktail parties: “My wife gave up her day job to write a blog–for free.” Such a comedian, my husband.

But now they all think my blog is pretty darn cool.

You see I’m going to the very first  FOOD ALLERGY AND CELIAC CONVENTION in WALT DISNEY WORLD!!!!

I may or may not take the family . . .  they have four months to be really nice to me.

Here are the top reasons why I’m so excited about going–and why you should meet me there on November 22.

1. It’s WALT DISNEY WORLD people . . . c’mon who wouldn’t want to go to a convention in the magical kingdom?

2. I’m AN ALLERGIC FOODIE— I LOVE allergy-friendly and gluten-free food! FACCWDW promises food demos by topnotch Disney chefs and culinary professionals.  I’m pretty sure they’ll hand out samples, don’t you think? This means free food–food I can actually eat.

3. Experts–people who know more than I do about celiac disease and food allergies–will be speaking and answering questions. I’ve got lots and lots of questions.

4.  The behind-the-scene fairies of FACCWDW are two smart gals who look extra cute in those wings: Laurie Sadowski and Sarah Norris. Their desire to “celebrate awareness of food allergies and celiac disease” started it all. How could I not join in?

5. There will be a nondairy ice cream buffet.

6. I get to hang with the rest of the  Blogger Street Team. People like Erica of Celiac and the Beast, Janice of The Adult Side of Disney, and Christy of Celiac 411 . . . these and all the other bloggers are people I’d like to have a glass of wine with at the end of the day–wouldn’t you? I’ll introduce you to more of the Blogger Street Team later.

7.  The sponsors of the event, including Enjoy Life Foods and Allergic Living Magazine and many others, are companies that make my food-allergic/celiac life better. I’d like to shake their hands (and yes, maybe get a free chocolate chip cookie or two from Enjoy Life).

8. Disney is known as the “gold standard” of special dietary food preparation. Not only do I get to go to an awesome convention in an awesome hotel in an awesome setting, I get to EAT and not WORRY about getting sick. Magical? I’d say so.

Disclaimer: FACCWDW is not affiliated or hosted by the Walt Disney Company, or any of its affiliates or subsidiaries.

I’ve Got Exciting News! (Hint: Big Ears) first appeared at Adventures of An Allergic Foodie.

Chocolate! Allergy Friendly! FREE!

If that headline got your attention, you’re probably a chocoholic like I am.

Did you also say this mantra when being tested for food allergies? Please don’t let me be allergic to chocolate. Please don’t let me be allergic to chocolate. Please don’t let me be allergic to chocolate.

Ha! You ARE a chocoholic like me!

Fortunately, to my great relief, I am NOT allergic to chocolate!

Unfortunately, I AM allergic to dairy, eggs, soy, gluten, corn and vanilla–all ingredients that are typically found in most chocolate.

For a long time, I was sad. Very, very sad. Especially during Valentines Day and my birthday. And maybe also Thanksgiving and Easter . . . and all the days in between.

But now I’ve recently discovered Amanda’s Own Confections. Actually they discovered me (thank you! thank you!), and it just so happens the month of April is both my celiac college son’s and my birthday month. Yes, I know the lemon in the sunglasses looks way too young to have a kid in college (or perhaps that’s why An Allergic Foodie uses a lemon for a Gravatar! LOL!).

Chocolate Bar Giveaway. Enter to win by Tuesday, April 22, 2014, 5 PM EST

Chocolate Bar Giveaway.
Enter to win by Tuesday, April 22, 2014, 5 PM EST

Anyway, back to chocolate. To celebrate our birthdays,  Amanda’s Own Confections wants to give one lucky person a present–a box of chocolate bars! That’s right! An entire box. TWELVE BARS OF GLORIOUS CHOCOLATE.

These chocolate bars make me close my eyes and moan–maybe that’s too much info?–and there are only three ingredients: Cane sugar, unsweetened chocolate, cocoa butter. So this makes them free of dairy, nuts, gluten, eggs, sesame, and fish/shellfish. (Why any fish would be in any chocolate is incomprehensible, but I’m told it happens.)

Here’s what you need to do to enter (you only have to do one, but if you do all I will do a happy dance and post it on You Tube*).

  • Write a comment below telling me how much you love chocolate (and my blog, of course).
  • Follow @anallergicfoodie on Instagram and like one of the pictures of Amanda’s chocolate bars. I’ll be posting several.
  • Follow me on Twitter–that 2,000 rule is killing me!–and tweet this blog post  with hashtag #amandasown
  • Like my Facebook Page and give a thumb’s up to one of my posts mentioning Amanda’s Own Confections.
  • Pin this blog post on Pinterest.

The contest will end on Tuesday, April 22, 8 PM EST. Must live in the U.S. to enter.

Ready. Set. Go!

I hope you win!

*I won’t really do a happy dance on You Tube because my sons, and maybe my husband, would be mortified.

Chocolate! Allergy Friendly! Free! first appeared at Adventures of An Allergic Foodie.

Maltodextrin: What Is It?

What Is This in My Food? Maltodextrin

“Do you know the source of maltodextrin in this chicken?” I asked the guy behind the deli counter.

“Maltodextrin is just sugar, it’s perfectly safe,” he said impatiently.

“But it comes from corn and sometimes wheat. I’m allergic to both.”

He shook his head as if I was speaking a different language, then he assisted the lady next to me.

I didn’t buy the chicken.

Maltodextrin is one of those ingredients that confuses me. Sometime it makes me sick, sometimes it doesn’t.  So today I decided to put on my sleuth hat and do a little investigating.

In terms fit for an allergic foodie who didn’t do well in science class, maltodextrin is simply a food additive produced from a starch. While the name has “malt” in it, maltodextrin does not contain any malt (phew!). It comes in a white powder or a concentrated solution.

What Is This in My Food? Maltodextrin?

What’s important for those of us with allergies, sensitivities and celiac disease to know is this: Maltodextrin is derived from corn, rice, potato starch, wheat, and sometimes barley.  So if you have allergies or sensitivities to any of these, you may react to maltodextrin. I know I sure do! This is why I don’t use Splenda–it contains maltodextrin from corn.

If you have celiac disease, you need to stay away from maltodextrin derived from wheat and barley. This is easier said than done. For instance, the other night my husband was eating barbecue ribs and maltodextrin was listed on the label. According the FDA Regulations, if the maltodextrin contained wheat, wheat should have been included on the ingredient (maltodextrin (wheat)).  It wasn’t. But I still didn’t feel safe because “gluten free” didn’t appear on the packaging either. And since I’m also allergic to corn anyway, I decided not to take a chance on those ribs.

Honestly, unless I’m eating food from a allergy-friendly company, I’ve never seen the source of maltodextrin listed. The reason maltodextrin derived from wheat can be listed as plain old maltodextrin, even though the FDA has labeling rules for the top-8 allergens, is a bit complicated. The Gluten Free Dietitian has a good explanation here.  I’m sure she did better in science class than I did.

Something else to consider: The amount of gluten in maltodextrin is usually less than 20 ppm; this means the FDA allows the food to be labeled gluten-free. For those of us who are super sensitive, 20 ppm is way too much.

So I’m glad I didn’t buy that chicken or bite into those ribs.  Unless the ingredient list identifies the source of maltodextrin, I’m staying away from it.

What Is This in My Food? Maltodextrin first appeared in 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.

Got Food Allergies? New Infographic Helps Food Allergic Folks

This infographic describing symptoms, prevention and treatment of food allergies comes from Sticky Jewelry, makers of medical ID jewelry.There have been way too many heartbreaking deaths related to food allergies this past year. The more we share information about food allergies, the more people we can help.  Let’s spread the word in 2014.

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