Life, Gluten Free

Life with Food Allergies, Our Story: Part 3

Catch up if you missed Part 1 and Part 2 of Life with Food Allergies: Our story. Feel free to enter the giveaway if you haven't already!

To wrap up Food Allergy Awareness Week, I want to share a little bit about how emotional it can be to deal with severe food allergies.

The truth: how I feel as a mom

When Sophie was first diagnosed with food allergies, I have to admit I was nothing short of terrified. And it took time to not be extremely fearful to give her any food - even the food that we knew was safe.

But ultimately, my husband and I decided: okay she has food allergies, but one step at a time we can figure this out. Let's celebrate what we can eat, come up with awesome recipes and make the best of it. Her food allergy diagnosis also came on the cusp of her (and my) diagnosis with Celiac Disease.

And so the journey began!

We immediately made our house free of her allergens and free of gluten. We tackled it as a family, and my husband and I never eat the foods that Sophie is severely allergic to. We don't feel deprived. For one, it's not safe.

Food proteins can last on surfaces for more than a week unless cleaned thoroughly.

Washing your mouth will not remove all food proteins from your saliva.

People have experienced allergic reactions from being kissed by someone who had food protein in their saliva and some of these reactions were fatal. 

Plus, you just don't look at food the same. Nuts, for example, aren't a "food" to us, but rather a danger that we avoid.

Foods that contain gluten aren't appetizing because it made us sick.

We just have a different outlook on foods now, and our diet is a huge part of our lifestyle so it becomes very fluid and natural to us.

But that doesn't mean I'm never scared or worried about Sophie's food allergies. I cringe when I see a nut-candy wrapper that blew in our yard from a neighbor. My husband and I notice things that most people wouldn't (crushed cashew on the sidewalk, pistacho shell in the sandbox at the park).

Social situations can also be difficult, because it may seem like no one really understands. The fact is, if they don't live it, they don't get it. You can't expect someone who has no previous knowledge of food allergies, to truly understand your situation. But hopefully you will find people that get it as much as they can. The most important part is that you understand, your child understands and is healthy, happy and growing!

To wrap this up, I want to let you know that people with food allergies do have rights. And below that, take a minute to check out some of the awesome resources we have in the food allergy community.

Know Your Rights

People with food allergies are protected under the American Disability ACT (ADA). A person with food allergies should not be left out just because they have a food allergy. Programs must be all-inclusive. For more information on this, visit Asthma And Allergy Foundation of America.

Resources:

Kids with Food Allergies (website, facebook, twitter, youtube, blog)

Food Allergy and Anaphylaxis Network (website, facebook, twitter)

Allergic Living (website, facebook)

Asthma and Allergy Foundation of America (website, facebook, twitter)

Arizona Food Allergy Alliance (website, facebook, twitter) *I don't live in AZ, but this group has wonderful information that applies to food allergies in general. 

The Nut-Free Mom (blog, facebook, book)

No Nuts Mom Group (facebook)

The BugaBees Friends with Food Allergies Book (website)

Food Allergy Awareness Apparel & Jewelry:

Olli Lolli: Allergy Aware Apparel for Kids

Hope Paige Designs Medical Bracelets

Mabels Labels (Food Allergy Awareness Stickers)

Laurens Hope Medical Bracelets

Life with Food Allergies: Our Story, Part 2

Catch up if you missed Part 1 of Life with Food Allergies: Our story. This is in celebration of Food Allergy Awareness Week, May 13 - 19. Feel free to enter the giveaway if you haven't already!

Part 2 focuses on how we navigate our lives from social activities to traveling.

Daily life, activities

We have become quite the experts at managing food allergies, but we've been doing it for 4 years now. It's not something that we honestly ever think about in quite the same context as others do who aren't familiar with food allergies. For us, it's just normal. 

Eventually, it becomes a part of your life. It's our lifestyle, and we don'r think of it as a burden. The steps we take are nearly automatic and it gets easier in time.

Birthday Parties:

I make Sophie a safe treat and bring snacks for her. Our wonderful friends make sure nothing is at the party that could cause a severe food allergic reaction for Sophie. Especially given that kids play, and food proteins can spread easily. Sophie knows not to eat foods that aren't approved by us, but there are many ways for food proteins to enter the body (hand touches mouth, eyes, etc).

And it never hurts to clean your child's hands, often! I always carry a natural, non-toxic hand sanitizer.

Classes & Activities

I have chosen to homeschool Sophie, but that is something my husband and I considered even when I was pregnant. Finding out that she has food allergies and celiac disease only made the decision seem even more logical.

But when it comes to classes and other activities, we've got it covered.

Sophie has taken gymnastics, ballet and tennis. She has never been in a bubble, or exempt from activities that she has wanted to participate in. 

Communicate & Make it Safe 

As a parent of a food allergic child, I whole-heartedly believe that having food allergies should not exempt you from activities, classes or events. There's usualy a way to make it safe. Communication is key.

When the time came that Sophie wanted to take a concert-series ballet class, I was nervous but I knew we could make it work. She had already taken other ballet classes, and I had taken similar steps to ensure her safety.

Here are a few steps I took:

1) I communicated with the ballet teacher and the dance coordinator about Sophie's food allergies. I told them that her having food allergies should not be a reason for her to be unable to participate in a concert series class. They agreed and made sure students cleaned their hands prior to class. NO food or drink was allowed in class.

2) I arranged for myself to be in the dressing room at the concert as a helper. I watched Sophie and her group until it was their turn and then I ran to my seat in the auditorium to watch. NO food or drink was allowed in the dressing room. After her show was over, I quickly made my way back to the dressing room to find her.

3) I remembered to breathe.

Traveling

We do not travel via air because it's too risky for us. But luckily there are many ways to travel. We took a road trip once and stayed at a KOA, which seemed a good option for us especially given Sophie's allergy to dust and dust mites. The KOA cabin was basically a stripped down wooden cabin and we brought everything else, such as our sheets and pillows. We've also camped in a tent at a camp ground.

And we remember to wipe down picnic tables and use a towel or table cloth because food proteins can last on surfaces for up to a week, unless cleaned thoroughly.

There are definitely safe ways to travel, and you just have to remember to BYOF: bring your own food :)

Stay tuned for Part 3!

Giveaway for Olli Lolli: Allergy Aware Apparel for Kids

Olli Lolli is sponsoring a giveaway in celebration of Food Allergy Awareness Week (May 13 - 19) and in conjunction with my series on Life with Food Allergies: Our Story (view part 1)

Olli Lolli's motto is "Don’t carry your allergy medication - wear it! " 

The company is based in Canada and founded by Michelle Williams, a mom of a food allergic child. She wanted her son to be able to wear his medication, instead of just carrying it. That way, it wouldn't get lost and it would be readily available should he need it. 

Sounds genuis right? 

Michelle took her idea a step further, creating high-quality durable clothing made out of safe materials such as organic cotton and jewelery made out of medical grade stainless steel.

Michelle's story is inspiring, and now her dream is a reality which helps other families keep their children safe, too.

Check out The Olli Pocket Gear Line which includes Windbreakers, Organic Cotton Hoodies and Organic Cotton Cargo Pants. 

Other products from Olli Lolli include Allergy Aware T-Shirts made out of organic cotton (Egg Free Kid, Nut Free Kid, Dairy Free Kid, Wheat Free Kid) and Allergy Aware Jewelery including both necklaces and bracelets.

You can find Olli Lolli on facebook, twitter and follow their blog.

Thanks to Olli Lolli for sponsoring a giveaway and being committed to fostering food allergy awareness.

For the giveaway, Olli Lolli is offering one Olli Pocket Wind Breaker.

It's equipped with a built-in pocket, clearly labeled for your child's Epi-Pen Injector, Insulin Injector or Asthma Inhaler. It includes an information insert for your child's name, emergency contact and medical information.

The shell is durable, water-proof and lined with 100% jersey cotton.

Sizes: X(4-5), S(6-7), M(8-9) and L(10-11)

Choose from: Taupe with Purple Lining or Sapphire Blue with Cream Lining. (pictured below)

GIVEAWAY DETAILS:

To enter you must leave a comment on this post telling me your favorite product from Olli Lolli and why.

The giveaway is on from May 14 until May 19, 2012 at 11pm MST.

Be sure to leave your email address, so we can contact you if you win!

Olli Lolli will ship to a US or Canadian address.

Just one comment per person and we will pick a random winner at the end of the giveaway. Thanks for participating!

And don't forget to follow Olli Lolli on facebook to keep up to date on their products.

Living with Food Allergies: Our Story, Part 1

In honor of Food Allergy Awareness Week (May 13 - May 19), I am hosting a series called Living with Food Allergies: Our Story. My sponsor for this series is Olli Lolli: Allergy Aware Apparel for Kids. I am hosting a special giveaway sponsored by Olli Lolli too, stay tuned! :)

Our Story

Our daughter Sophie is 5 years old, and has multiple severe food allergies. We first became aware of her food allergies when she experienced an allergic reaction to pine nuts. After that, she was tested and diagnosed with a severe allergy to tree nuts, among other foods (including melons, berries, flax and sesame). 

Sophie's first food allergic reaction

Sophie was just about 13 months old and ingested a very small amount of pine nut and within minutes she broke out in large clusters of hives on her arms and began throwing up continuously.

In the ambulance ride to the hospital, I explained that we had just started seeing a pediatrician that specializes in food allergies, and that Sophie hasn't had her blood test for food allergies yet but I emphasized that I am certain she is experiencing a food allergic reaction.

I verbally gave a list of the foods that we believed her to be allergic to (we had no idea she was allergic to nuts). But the paramedic pointed out to me that Sophie has not been diagnosed with any food allergies, and my list of foods can only be considered "suspected foods."

Once we reached the hospital, we were told that they were ready to give her a chest x-ray. They did not believe she was having an allergic reaction, but rather they thought she was choking. This was mostly due, apparently, to her not having a history of food allergies.

Sophie's pediatrician was contacted, and she requested that Sophie be discharged and brought to her because the hospital was ignoring the clear signs of a food allergic reaction.

Before I continue I need to make something clear, if your child is experiencing a food allergic reaction you should seek medical attention immediately. Sophie's pediatrician specializes in food allergies, and was informed of her condition, vitals and symptoms. Her professional opinion was that Sophie could safely be transported to her office, because she was not having any breathing problems or loss of conciousness and her vitals were perfect. 

Sophie's reaction did not require the use of epinephrine. Her symptoms were vomitting and hives, but it did not progress further.

It is unfortunately quite common for food allergies to be misdiagnosed in the emergency room. I was asked to participate in a survey panel on this very subject, in hopes of improving diagnosis and treatment.

Diagnosis

We sat with her doctor for over an hour after Sophie's allergic reaction, letting it sink in and talking about what this means for us now. She explained that we need to carry EpiPen's because subsequent reactions can be worse than the first, especially given that her first reaction was to a nut. And the next step was to have her blood tested for food and environmental allergies.

Sophie tested positive for both IgG and IgE reactions to many different foods and other allergens such as dust, dust mites and grass.

Be an Adovcate for your Child

I believe that diagnosis counts in many ways... and in an extremely important way, because it can impact the care that you receive from paramedics and doctors in the emergency room.

But most importantly, you have to be the voice for your child, be their adovcate. You have to realize that the paramedics are there to help, but they do not know your child. They are unaware of your child's previous medical history or conditions. That's why you have to stay focused and be able to give them the information they need in order to help your child.

After Sophie's first food allergic reaction, my husband and I both took on the roles of being an adovcate for her. Sometimes that means disagreeing with a doctor. While I have extreme respect for paramedics, nurses and doctors - I am also a parent, and I know that the bottom line is: I know my child the best because I'm with her everyday. 

The mistake that was made by the hopsital during Sophie's food allergic reaction was unfortunate, but not uncommon. Hopefully, sharing my story will help spread awareness and give parents courage to speak up in times when they know what is happening to their child, even if doctors are unable to see it. 

Stayed tuned for part 2 of Living with Food Allergies: Our Story, where I will talk about how we navigate our daily life, activities and more.

Allergy-Friendly Easter Ideas

Any kind of holiday can be tricky with food allergies, but not on my blog folks. I just won't let it happen. I have some allergy-friendly easter products and ideas to share with you today. I hope you enjoy them and that they help you have an allergy-friendly Easter with your kids!

Alternatives to dying eggs (for those with egg allergies)

 Ceramic Paint-Your-Own Easter Eggs by Eggnots

Eggnots are shaped just like real eggs, and can be decorated in many different ways. You can use paint, glitter glue, ceramic markers -- just to name a few!

If you would rather have wooden eggs, check your local craft store. Wooden eggs can be painted or dipped in glue and glittered.

Plastic eggs can also be painted, googly-eyed and more! Check out my Pinterest Easter Board for more ideas.

You can also find egg shaped styrofoam, but I am not a big fan of styrofoam.

Allergy-friendly Easter Basket Fillers

Books (This year I bought Sophie a lift-the-flap easter adventure book)

Art supplies 

Stickers

Bubbles

Colorful Chalk

Dried fruit from Made in Nature (apples, mangos, apricots, plums, figs!)

Inka Plantain Chips

Piggy Paint [non-toxic nail polish: odorless, gluten-free, nut-free] Use code: HAPPYSPRING15 at checkout for 15% off, now until April 6th at 11:59pm CST.

Allergy-friendly plastic egg fillers for egg-hunts

Stickers

St. Claire's organic candies

Dehydrated Banana Chips

Coins (quarters, dollar coins, etc)

Marbles

Allergy-friendly easter treats to make

Candied Orange Slices

Coconut Mango Lassi

Orange Fig Bars

Chocolate "Cheesecake" Bites [dairy-free]

Banana Bake

What are your Easter traditions? Do you have any allergy-friendly easter ideas? feel free to share in the comments below!

5 Gluten-free and Nut-free Snacks

Not too long ago, I had a reader ask me about what kind of snacks Sophie likes to eat; snacks that are free of gluten, nuts, etc. While we do have a few products from companies we can trust, her day-to-day diet is based on whole foods. We spend a lot of time in the kitchen!

Above is a picture of one of her lunches from last week. I made her a salad with creamy avocado honey mustard dressing, olives, a chicken burger and french fries (cooked in coconut oil).

Even though she has many food allergies, we celebrate what we can eat and we continually come up with new fun ideas for recipes.

But sometimes it's nice to grab a quick snack, so we are lucky to have a handful of products that we can eat from companies we can trust.

Companies that are happy to disclose the details of their manufacturing process, so you can rest assured that you are not going to be ingesting nuts, gluten, dairy -- etc, by accident.

Here's a list of 5 of Sophie's favorite gluten-free and nut-free snacks.

Snack 1: Plantain Chips

We discovered Inka Crops Plantain Chips a couple of years ago. They are the perfect alternative to corn chips. Sophie loves them! They also have Cassava Chips, Sweet Plantain, Sweet Potato Chips and Mixed Chips (plantains, cassava, sweet potato). We love them all!

Snack 2: Dulse Strips

Dulse is a type of seaweed and it's high in iron, some b-vitamins and offers a unique taste. Sophie loves to snack on the dulse strips. You can also buy dulse flakes and add to soup, salad or other dishes. We buy the whole dulse strips by Maine Coast Sea Vegetables.

Snack 3: Organic Candy by St. Claire's

St. Claire's Organics is feingold approved and specializes in allergen-free candies. We like their soothers in a variety of flavors: lemon, licorice, wintermint, peppermint, tummy soothers and more. They happen to be a local company, and we're going to their factory this week for a tour and to pick up a bulk quantity of the candy for Sophie's birthday pinata! 

Each of their tins come with a fun quote inside too, for example: "Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love. - Lao-Tzu"

 Snack 4: Dried Fruit

Sophie loves the mangos and apples by Bare Fruit Snacks. They are oven baked and organic.

Made in Nature brings us a variety of organic dried fruit, including: figs, plums, mangoes, apricots and apples. The dried apples are soft and squishy almost like marshmallows (in comparision to the baked apple chips from Bare Fruit Snacks which are crunchy chips).

Snack 5: Amy & Brian's Coconut Water

I recently wrote out Amy & Brian's, their coconut water is very refreshing and has a lot of nutrients in it for a quick snack to keep you going! We drink it plain mostly, but it's also good to add to smoothies.

Where can I buy these products?

Good question. I have provided the websites for each of the brands so you can go to "store locator" or call them and find out. All I can tell you is where I buy them in our region (Colorado). That may help some of you, but for everyone else just go on a hunt for the products. If your natural foods market doesn't carry them, ask! That's how we've gotten a lot of our favorite products in, simply by requesting them.

In the Colorado region or online:

Inka Crops Plantain Chips (Vitamin Cottage (some locations), Lucky's Market, Alfalfa's Market, Buy online directly from Inka Crops or Amazon.com)

Made in Nature dried fruit (Sprouts, Costco, Whole Foods, Vitamin Cottage, Amazon.com)

Bare Fruit Snacks (Sprouts, Whole Foods, Vitamin Cottage, Amazon.com)

Coast of Maine Sea Vegetables - Dulse Strips (Vitamin Cottage, Whole Foods)

St. Claire's Organic Candy (Lucky's Market, Alfalfa's Market, Locally at St. Claire's Factory, online at driect from St. Claire's or Amazon.com)

Amy and Brian's Coconut Water (Vitamin Cottage, Whole Foods, Amazon.com)

Please note: everyone has different food alleriges, so keep in mind that this is a list of products that work for us. If you or your child has severe food allergies or celiac disease, please take it upon yourself to call the companies and inquire about their facility. Use our suggestions as a guide. And because companies may change their ingredients and/or manufacturing processes, it's a good idea to keep a heads up by calling them from time to time. 

Tips on Finding Allergy-safe Foods and How to Be a Conscious Consumer (Part 2)

Did you read Part 1 of Tips on Finding Allergy-Safe foods? (click here if you haven't yet!)

We eat very little packaged foods, not just because it's hard to find allergen-free and 100% gluten-free products... but because it's healthier to eat a whole-food based diet.

The few foods we eat packaged are by companies that we have spoken to on the phone with - sometimes on numerous occasions - to learn about their facility and food processing practices. They do not produce gluten, tree-nuts, etc in their facility.

So, we have literally spent hours on the phone speaking to companies. We do this for all of the products we buy such as: supplements, bodycare, food, etc.

It's important to contact companies, as you have read in part 1, because food labeling is not effective. There are very little regulations regarding what you can and cannot put on a food label. This means that "gluten-free" can be put on a label even if the product contains trace amounts of gluten.

What should I say when I approach companies?

Here are a few ways we start the conversation:

"Hi, I am very intrested in your line of products.. but my daughter has severe allergies to foods like tree-nuts, sesame and flax... we both have celiac disease so that means we can't have gluten. I see that your product ingredients do not contain those, but I would like to inquire about your food manufacturing policies to see if you produce any products in your facility that contain those ingredients."

or

"Hi, I am interested in your product but I need to ask some questions because we have allergies in the family."

Then you can go on to explain what allergies you have, and ask if their facility is free of these ingredients.

I explain about cross-contamination and how serious of an issue it is. I tell them that we've gotten sick in the past because products contained trace amounts of gluten or our other allergens, so now we always call companies before trying their products.

It's important to let them know how serious the situation is, so that they understand it's important to get the right information.

Never be afraid to ask. Companies should expect inquiries, and if the person you are speaking with on the phone does not have the information you need then ask to speak to someone who does.

Labeling policies is something that definitely needs to improve across the board, but again it's up to us to call companies to make sure products are truly safe!

Tips on Finding Allergy-safe Foods and How to Be a Conscious Consumer

It can be very tricky to find products that are truly allergy-safe, gluten-free, tree-nut free and so on. The key is not just in reading the label because labels are often not clear and the laws on labeling for food allergens is fuzzy at best.

In fact, labels can often be incredibly deceiving. The key, rather, is to be a conscious consumer. Know what is in the products you are eating, and do not rely on the label to tell you what's really in it.

Here's a rundown on labeling and why it's rarely 100% accurate:

1) It is not mandatory for companies to label their cross-contaminated products as such. It is strictly optional. When you see "may contain ..." or "packaged in a facility with .." or "produced on the same equipment as ..." that company has taken it upon themselves to add that to their label. So that means, many companies out there are not disclosing this information on their labels.

2) Labels can be deceiving. Many products are labeled "gluten-free" because the ingredients contain no gluten, but the product may be produced in a facility (and often even on the same equipment) with other products that do contain gluten. According to the FDA, a product can also be labeled "gluten-free" but have up to 20ppm of gluten. You may have also seen "certified gluten-free" on some products, which is an independent certification by GFCO that means it contains less than 10ppm of gluten and 5ppm of gliadin.

Here's an example of mislabeling. There is a new product out and it claims on the package "we're not nuts!" meaning, they are not made out of tree-nuts. The package also has a "gluten-free" symbol. Yet reading further on the package you will find in tiny letters "may contain traces of tree-nuts, wheat and dairy."

wait, what?

Let's review this. They are advertising a product as being a nut-alternative. Yet, this product may contain traces of nuts. Clearly, they are not targeting people with nut-allergies, so who then? And while the product may be labeled "gluten-free" because the ingredients are technically free of gluten, their manufacturing processes are not gluten-free and therefore you may find trace amounts of gluten in this product.

And this is a big one, because many people do not realize this:

3) Some companies produce their product in one facility and ship it to another facility for packaging.

That means that while the facility in which they produce the product may be safe, their packaging facility may not be. This is why it's crucial to always call the company and ask questions about their production and packaging facilities.

4) Many companies share facilities with other companies or they simply make a wide variety of products - many not being gluten-free or nut-free.

5) Hidden ingredients? FALCPA is strictly a law that was passed to make sure the actual ingredients are described properly on the package. For example, if a product contains "spices" in the ingredient list and those spices have wheat, the company must disclose that on the label otherwise it would be a hidden ingredient. And they have to be specific, if the ingredients say "nut" they must clarify as to which nut it contains.

You can learn more about FDA guidelines regarding gluten-free and food-allergen labeling here.

Click here to read part 2 of "Tips on Finding Allergy-safe Foods and How to Be a Conscious Consumer".. broken up into two segments for easier reading!

Amy and Brian's Coconut Juice Review

We have been drinking coconut water for several years now and Sophie loves it. Our brand of choice is Amy and Brian's coconut water, because 1) we like the taste and most importantly 2) we have spoken to them on the phone to verify that it is produced in a gluten-free and nut-free facility (they only produce coconut juice).

So, what benefits do you get from drinking coconut water?

Coconut water is very hydrating to the body because it is high in electrolytes, especially potassium. It even can take the edge off of hunger, making it a great snack if you are waiting for lunch or dinner.

Amy and Brian's coconut water won us over by its great taste, and of course, that it's allergy-safe for us. We often buy it by the case because it's more affordable that way. Of course, some of you may be thinking: it's in an aluminum can, is that safe?

There is evidence that shows that there can be harmful side effects of long-term exposure to aluminum. I believe in always being cautious, and it does make me wonder about the correlation between the consumption of canned food items and alzheimer's disease. (If anyone has more knowledge of this, please feel free to leave a comment!)

There are many coconut water brands out there (some are not safe for us, O.N.E brand coconut water produces a cashew flavor) and some are in tetra paks. While tetra paks are thought to be safe, they cannot be recycled.

Do you drink coconut water? What's your favorite brand?

*this review is not sponsored by Amy and Brian's. It is purely my opinion and I did not receive any free samples nor was I asked to post about it.

How to Help People Understand Food Allergies

My daughter has severe food allergies and celiac disease.

I also have food allergies and celiac disease.

My husband has food allergies.

A good friend of mine has food allergies.

Her daughter does too.

Many more of our friends have food allergies, celiac disease, or gluten intolerance.

- More than 12 million Americans in the U.S. have food allergies.

- There is no cure for food allergies. Strict avoidance of food allergens and early recognition and management of allergic reactions to food are important measures to prevent serious health consequences.

But although both food allergies and celiac disease are on the rise, the awareness around each of them in the general population is still quite poor.

Sometimes you feel like you are talking to a brick wall because no one seems to understand.

Sound familiar?

How to help others understand your dietary needs

Step 1) Live your life the way you need to.

Step 2) Openly talk about your food allergies to help spread awareness.

Step 3) Be open to questions from friends and family to help them understand better.

Step 4) Provide concise, factual information for those who seem to respond well to that type of explanation.

And eventually, your friends and family will start to understand better.

The number one choice that helped us the most was to live our life the way we need to.

We take the precautions necessary to keep our daughter safe (making it clear to guests that our house is a gluten-free and nut-free zone, wiping down picnic tables at parks before eating on them, politely refusing food that isn't safe for us, etc). Even if others don't understand.

and we kindly remind people:

This is our life. We live it every day. It's not odd to us, it's our version of normal.

Do you have any tips? share them in the comments section!