Food Allergy Living Blog

Nutrition Specialist Column

Enriching Your Family’s Food Allergy Journey

Posted 7.1.15 | Nutrition Specialist

By Kimberly Pellicore, The Food Allergy Mom 

Kimberly has celiac disease and is a proud mom to two children, one of whom has severe, multiple life-threatening food allergies and asthma.  After years of being largely dissatisfied with the lack of credible online and local support systems, she established thefoodallergymom.org to offer parents and caregivers of children with celiac disease, food allergies, and asthma a POSITIVE support network. Follow her on Facebook, Twitter, and Pinterest.

THAT day— the day before I took my child to the allergist and they sent us home with an epinephrine autoinjector and a food allergy diagnosis— I was a regular mom kissing boo-boos and inciting laughter.

The next day, life looked and felt different…for me and my son.

Food allergies?  No one in my family had food allergies, or my husband’s that I was aware of.  How was this possible?  Could the test have been wrong?  What on earth was I going to feed my child from this point forward?  Would this diagnosis affect his growth?  How would these new dietary restrictions impact his nutrition?

Do these thoughts sound familiar?  For me, it signaled the starting line.  Like it or not, I was running a marathon and it was time to start thinking strategy.

Here are 10 proactive strategies to employ in your food allergy journey:

1.       Breathe:  You and your child are the exact same people you were before this diagnosis.  Your love for each other has not changed.  Give your child a warm cuddle to make sure he/she knows it.

2.       Set Boundaries:  Food allergies absolutely cannot define you, your child, or your family, unless you allow them to. 

3.       Make A Food Allergy Action Plan:  Be sure the plan is approved and signed off on by your child’s allergist.  Keep the hard copy for yourself and make additional copies for other caregivers of your child.  Not sure where to start?  Food Allergy Research & Education (FARE) has an excellent example here.

4.       Learn To Read and Understand Ingredient Labels:  Learn how to scan and read ingredient labels so you can buy and stock up on safe foods.  Not sure how to correctly read a label?  For a clearer explanation, visit FARE’s website.

5.       Educate Yourself:  When looking for information, it is crucial to find accredited, credible, and positive resources.  A few of my favorites are Food Allergy Research & Education (FARE), Kids With Food Allergies (KFA), Asthma and Allergy Foundation of America (AAFA), and Allergic Living Magazine.

6.       Get Familiar With Your Child’s Prescriptions:  Now that you’ve filled your child’s prescriptions, learn how to properly use them and make sure others who care for your child know how to use them as well.  Some companies even offer instructional apps for your mobile devices.

7.       Get To Know Your Allies:  If you find a product that plays a major role in your food allergy journey, take time to visit the company’s website and social media outlets as they often offer additional tips and recipes.  For example, you can buy Neocate formula at the store, but only if you visited their website would you find that they offer a food allergy cookbook.

8.       Be A Role Model:  Your child, no matter his or her age, is watching your reactions closely. This means it is okay to show some frustration, as long as the child also sees you resolve it.  It means remaining calm (or at least faking calm) in a food allergy crisis situation so the child does not experience additional panic.  It means living life with a smile, even on the hard days.

9.       Find A Confidant:  Every parent and caregiver needs and deserves a caring support system.  Enlist a friend to lend his or her ear when you need to regroup and talk things out.

10.   Repeat:  The food allergy learning curve is forever changing and a caregiver’s education is never complete.  This is not a burden, but a gift, as scientific breakthroughs often change our food allergy journeys for the better.

I’ve been utilizing the above steps for more than 10 years and I continue to walk the food allergy journey daily with my son.  So, how has life changed?  It hasn’t…not really…thankfully.  I’m still just a mom who loves her sweet son- a boy who loves Legos, lives life to the fullest, has a great smile, and, oh yeah, lives with food allergies.


Allergy-Friendly Birthday Party Recipes and Activities

Posted 6.11.15 | Nutrition Specialist


Are you hosting a birthday party for your food-allergic little one, or maybe you’re expecting food-allergic guests? No need to reinvent the wheel! In this blog, you’ll find links to several blogs we’ve previously created which include a number of allergen-free party activities and recipes/snacks!

Recipes

We like some of these recipes so much that we’d even serve them to non-allergic guests. Nobody would know the difference!

Here’s a delicious alternative to your traditional birthday cake:

Is your child receiving his/her nutrition via a feeding tube and unable to eat by mouth? Check out this “foodless birthday cake” that our colleague Mallory created for her sister:

If you’re a parent to a child who does not have food allergies, however would like to learn more about food allergies in order to host a “food-allergy friendly party”, try reading this blog:

This post has it all, including information on hosting a party with guests who have food allergies, sending your food-allergic child to a party, and various recipes:

 

Non-Food Activities

In our society, we tend to center most of our celebrations around food, however this does not have to be the case! We can enjoy our birthdays (and any other celebration) without involving food at all! Check out these links for non-food related party activities:

These web sites suggest party activities for school celebrations; however these ideas can easily be adapted for home celebrations as well!

How have you celebrated your little one’s birthday in an allergen-friendly way? We’d love to hear your ideas!

-Kendra Valle, RDN

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Image by ND Strupler


Preparing Your Child with Food Allergies for Summer Camp

Posted 6.4.15 | Nutrition Specialist

Summer camp season is right around the corner! For the nearly six million children in the U.S. with food allergies, it is important that camps have established food allergy policies. We understand that it takes a little bit more prep and work to send your child off to camp when they have food allergies. Therefore, we are here to make your life easier and have provided some tips and information to help ensure that your cutie has a safe and fun camp experience.

·         Consider enrolling your child at a camp that is designed specifically for children with food allergies.  Food Allergy Research & Education (FARE) provides a thorough list of 2015’s “Food Allergy-Friendly Camps.”

·         Notify the camp of your little one’s food allergies by filling out and providing them with FARE’s Food Allergy & Anaphylaxis Emergency Care Plan.

·         Watch Kids with Food Allergies’ free educational webinar called "Off to Camp with Food Allergies", which includes information on: 

·         How to choose a camp

·         Questions to ask the camp staff

·         How to store epinephrine at camp

·         Food allergy management at camp

·         Educate your child on how to properly manage their food allergies at camp and ensure that they are aware of:

·         Safe and unsafe foods

·         Strategies for avoiding exposure to unsafe foods (i.e. NEVER trade food with other campers)

·         Symptoms of allergic reactions (i.e. NOT to go off alone if symptoms are beginning);

·         How and when to tell an adult about a possible allergic response

·         How to read a food label (if your child is younger, plan with the camp how to handle this)

·         How to use epinephrine 

Feel free to share with us any other resources that you have used in prepping your little one with food allergies for summer camp!

Have a great summer!

-The Neocate Team 

 


Satisfied YOU, Happy US!

Posted 6.3.15 | Nutrition Specialist

For more than 25 years, we’ve been working to meet the changing nutritional, developmental and social needs of children with food allergies. We have always encouraged our community to be strong and not let food allergies get in the way of everyday life. Neocate has stepped in, and tried to make this journey easier for kids and their families with food allergies.

We wanted to reach out to all the members of our community and extend a huge THANK YOU for all of your love and support. We receive messages from all around the world that thank us for being the only age-specific range of amino acid-based products which has proven to be effective in the nutritional management of food allergies and associated GI conditions. 

Your testimonials positively encourage us and reinforce the strong support Neocate receives from the food allergy community. By sharing your little one's success story of how Neocate has helped with their food allergies, you can help raise awareness about these conditions that still remain unknown to a few. Parents need to be informed that diagnosis and relief are possible. Most of all, it will give real hope to other families who are facing similar difficulties.

 

 

We promise and assure you that your story will be treated with respect on our Neocate website, our Food Allergy Living blogFacebook page and other public education materials. We would also love if you shared fun photos of your little ones with us and our community. Pictures help other parents like you see the difference Neocate can bring to their children.

Please submit testimonials and your cutie's pictures here. We can’t wait to hear and share your Neocate story! 


How to Be Prepared: When You Have a Child With a Severe Food Allergy

Posted 5.28.15 | Nutrition Specialist

Grennan Sims is a registered dietitian and the Nutrition Education Coordinator for the Hickman Mills C-1 School District in Kansas City, MO.  Grennan has worked in school nutrition for nearly 20 years, developing healthy school meals and teaching children ages 3-18 years about making healthy food choices.  She’s also the mother of a child with severe food allergies. “I’m on a mission,” she says, “a mission to protect the lives of the children we serve in school nutrition.  I know what it’s like to worry about sending your child with a food allergy to school.  My goal is to empower school nutrition professionals with the knowledge and skills necessary to effectively manage food allergies in school kitchens and cafeterias.”

Grennan serves on the Food Allergy Management & Education (FAME)national advisory board, where she is honored to share her unique perspective on the management of food allergies in school nutrition.  She is also a contributor for AllergyHome.org and Food Allergy & Anaphylaxis Connection Team (FAACT).  Grennan has presented at numerous local and state conferences.  In July 2014, she teamed up with a pediatric allergist and nurse to offer a comprehensive training workshop about food allergies at the School Nutrition Association’s Annual National Conference.  

As the mother of a child with a severe food allergy I know-all too-well the fear of sending your child to school and praying she comes home safely.  We used to insist Rachel take her lunch to school whenever pineapple was offered on the menu, but often it was paired with her favorite school lunch entrée that she rarely got to enjoy because of it. 

<SIGH> 

As a school nutrition dietitian, how could I deny my daughter who wanted to buy a school lunch?

I knew that school nutrition professionals read and re-read (and read again) literally hundreds of food labels.  I knew they implement cross-contact prevention strategies as they prepare thousands of meals every day.  They wash hands and change gloves between every new task.  They check and recheck lists of students with noted food allergies.  But still, I was anxious about sending my baby to buy lunch at school when pineapple was on the menu.

<DEEP BREATH> 

I spoke to the district level supervisor responsible for managing food allergies to make a plan that included my daughter’s teachers, the school kitchen manager, my daughter and my husband.  The plan evolved as Rachel got older – she now goes through the lunch line and self-carries epinephrine.  Here’s what we did early on and things we still practice today:

·         Provide school nutrition office with required documentation signed by physician.  Schools should not make food substitutions without a doctor’s statement identifying the medical condition (ie. food allergy) and how it restricts the diet, major life activities affected, what foods must be omitted and what foods are allowed.  It is good practice to provide updated forms each year.  Ask if your district requires annual updates.  Restrictive diet changes must be updated in writing and signed by a doctor.

·         Ask the school nutrition director about food allergy management training provided to district culinary team.  School nutrition departments are required to meet professional training standards, including food safety.  Share food allergy resources, as necessary.  Early and frequent communication with school nutrition staff helps support their success and can create peace of mind for both of you.

·         Introduce your child to the school nutrition manager and staff.   Everyone in the kitchen should know what your child looks like, as well as what is his/her food allergy or other diet restricting medical condition.

·         Speak directly with the kitchen manager at your child’s school before the start of school, if possible.  Provide list of safe foods he/she enjoys.  If available and affordable, schools will make every reasonable attempt to provide foods your child likes and can safely eat based on doctor’s orders and plan developed. 

o   When Rachel was in elementary school, on days pineapple was offered, we emailed the kitchen manager her safe menu choices.  If something on the menu was not available, the manger let us know alternatives offered.  School Nutrition staff pre-plated the meal and her teacher retrieved it from the serving line to avoid accidental exposure in the self-service area.  Rachel ate lunch with “safe lunch buddies” every day.  

o   Middle school brought new freedoms and responsibilities for Rachel.  She lets the kitchen manager know if she plans to eat school lunch each day.  If pineapple is offered, staff provides safe side dishes in covered bowls so Rachel can avoid potential cross contact on the self-serve bar. 

o   Next year, high school will present new opportunities for us to partner with school nutrition staff!

The first time we let Rachel buy lunch on a “potentially life threatening day” was one of the longest days of my life.  I was on pins and needles checking my cell phone all day, praying it didn’t vibrate on my desk at work.  I forced myself not to meet her at the bus stop that day, but watched with relief as my then second grader walked home to me that day.    I asked about her day, which included asking her to tell me something fun or exciting that happened.  “I got to eat chicken tenders today,” she said with a huge grin on her face.  “Oh yeah, how was that?”  I asked.  “Delicious!” she exclaimed.  I asked if everything went okay.  “Yep,” was all she replied.  All that worry over nothing.  After two years of packing lunches every day, she finally got to eat school lunch again.  Whew!

-Grennan Sims, RD, LD – District Dietitian, Hickman Mills C-1 Schools, Kansas City, MO


Eosinophilic Esophagitis (EoE) and the Six Food Elimination Diet

Posted 5.15.15 | Christine Graham-Garo

Eosinophilic Esophagitis (EoE) is a condition that is continuing to get more and more attention in the medical community, which means the public is learning more about it too. Unfortunately though, the management options for EoE are not black and white. EoE may be managed either with medication, which has known long-term side effects, or nutrition therapy, which has been shown extremely effective, but may be difficult to follow for some families.

Medications used to manage EoE are all steroids, and at this point no medication has FDA approval for EoE. Steroids have been shown to be effective in managing EoE for more than half of patients. However, steroids may not be the best long-term solution for everyone. Many families who choose to use steroids may mix the medication recommended by their physician with Neocate Nutra. This is because Neocate Nutra thickens, so can help to coat the esophagus with the steroid. This use of Neocate Nutra was even studied by a medical team and you can read about their published research here.

As EoE is a chronic condition, management with nutrition therapy is often discussed and preferred by many families over steroids. Here are nutritional therapy options for EoE:

  • Elemental Diet – A diet consisting almost exclusively of amino acid-based (or elemental) products
  • Elimination Diets – The removal of allergens from the diet.
    1. Tailored Elimination – Elimination of specific allergens based on allergy testing
    2. Six Food Elimination – Elimination of 6 top allergens based on the most common allergens seen in EoE patients

The Six Food Elimination Diet

The 6 Food Elimination diet has been gaining in popularity because it bypasses extensive food allergen testing needed for the Tailored Elimination diet. As you may know, allergy tests (skin prick tests and blood tests) are not perfect. There are often false positives which can make the treatment plan more complicated and time consuming, and some allergens may be missed ('false negatives'). So what the 6 Food Elimination diet proposes is that, off-the-bat, patients eliminate the top 6 allergens seen in EoE patients. The top allergens are milk, soy, eggs, wheat, peanuts/tree nuts, and seafood. One study1 confirms there is a 74% success rate when using this type of nutrition therapy for EoE. (As a point of reference, an Elemental Diet shows a 95-98% success rate based on multiple studies.) Researcers are also looking into 4 Food Elimination diets.

Advantages and Disadvantages to consider

The advantages of using the 6 Food Elimination diet approach are that you can still eat solid foods. It also eliminates the need for extensive skin and blood tests to check for food allergies. Important disadvantages to this diet therapy are that it may unnecessarily remove foods from the diet, and many process foods are out, meaning the diet often involves a lot of preparation and careful reading of ingredient lists. Eliminating so many foods can increase the risk of patients being deficient in one or more nutrients. Also, as many of you may know, it is hard just to remove milk and soy from your diet. Try eliminating SIX different allergens that are found in many foods while maintaining your nutritional status! For this reason, many medical teams that manage patients with EoE encourage their patients to supplement the 6 Food Elimination diet with a nutritionally dense, hypoallergenic elemental product, such as Neocate®. This can help ensure the patient is getting all the protein, vitamins and minerals they need per day while ensuring that no allergic reactions will occur with the elemental products. It is vital that EoE patients are monitored by a dietitian. The dietitian will help calculate how much of the elemental product the patient will need per day and also make sure the nutritional status of the patient is maintained.

Again, since research has found a 74% success rate for the 6 Food Elimination diet, it's possible that symptoms will persist after starting the 6 Food Elimination diet. If this happens, your medical team can help you decide the next best step, which may include a careful review of your diet, possibly eliminating more foods, or starting with a more “allergen safe” diet therapy such as an Elemental diet. After a few weeks on the Elemental diet, most teams will work with you to start reintroducing solid foods to figure out which ones may be contributing to your symptoms.

I hope this helped to shed some light on this nutritional therapy options for EoE. Every person will have their own treatment plan that works for them. Is anyone following an elimination diet now? How is it going for you? Have any tips you can share that may help others manage an elimination diet?

-Christine

1 Kagawalla AF et al, Effect of six-food elimination diet on clinical and histologic outcomes in eosinophilic esophagitis. Clin Gastroenterol Hepatol 2006:4(9):363-8


Take Action in May to Keep Food Allergies at Bay

Posted 5.5.15 | Nutrition Specialist

Researchers estimate that up to 15 million Americanshave food allergies and it affects 1 in every 13 children (under 18 years of age) in the U.S. The month of May is dedicated towards raising awareness and educating public on food allergies. We have put together a list of initiatives and activities in May to help you do your bit and get involved:

  • Food Allergy Action Month – May 2015: Food Allergy Research & Education (FARE)has called out May to be the Food Allergy Action Month. There are a number of activities and ways to get involved throughout the month of May. Activities are circled around raising awareness, educating others and inspiring action to support the food allergy community. FARE also offers free resources like posters and handouts to help others understand the broad impact and serious nature of food allergies.
  • Food Allergy Awareness Week – May 10-16, 2015: According to a study released in 2013 by the Centers for Disease Control and Prevention, food allergies among children increased approximately 50 percent between 1997 and 2011. Since 1998, FARE has been educating public on food allergies through the Food Allergy Awareness Week which starts from May 10 through May 16 this year. You can start small by creating awareness in your personal networks on social media. Tweet facts about food allergies to inspire others to take action in your networks. FARE has created resources for social media like tweets and profile pictures http://bit.ly/1bKzDbj
  • AnaphylaxisAwareness Day – May 13, 2015: On May 13, FARE wants you to take action by learning how to use an epinephrine auto-injector or training someone else. Every three minutes, a food allergy sends someone to the ER and this day will help reduce that number if each one of you can learn how to deal with a food allergy crisis situation.
  • National Eosinophil Awareness Week – May 17-23, 2015: On May 15, 2007, the House of Representatives passed HB 296 designated the third week of May as National Eosinophil Awareness Week (NEAW). The purpose of this week is to create awareness and educate general public and the medical community on diseases associated with Eosinophil. The theme of NEAW is E-D-U-C-A-T-E (Educate, Donate, Unite, Change, Awareness, Thank, Engage). Each topic corresponds with a list of suggested activities for each day of the awareness week http://bit.ly/EosinophilAwareness

These activities give each one of you a great opportunity to shine light on food allergies – a condition which still remains unknown to many. How do you plan to inspire action this year?


New Resource: CMNuA Blog

Posted 4.24.15 | Nutrition Specialist

 

The Children's Medical Nutrition Alliance (CMNuA) is a  nonprofit organization, was developed out of the explicit need for a unified voice to advocate for patients who require medical nutrition to live and thrive. As a national coalition of parents, healthcare providers, advocacy groups and corporations, CMNuA’s mission is to advance the cause of medical foods and formulas (as defined by the U.S. Food and Drug Administration, 21 U.S.C. 360ee (b) (3) 21CFR107) through education, support and advocacy.

By connecting families, healthcare providers, communities and others, CNMuA improves medical foods access by increasing awareness of common food allergies and diseases that routinely require these foods and formulas in their overall medical management. CMNuA also helps eliminate access barriers to these foods and formulas, by being a source of information on medical food matters such as coverage inequalities and the resulting economic impact on American families.

As part of being a source of information on medical foods, CMNuA recently launched its blog where the organization offers resources on how to find appropriate medical food coverage, understanding severe food allergies, and how to build community around disease-specific allergies.

Head over to cmnua.org/blog to learn more information about the organization and the work they are doing.

 


Top 5 Food Allergy Apps

Posted 4.15.15 | Nutrition Specialist

It wouldn’t be wrong to say that we live in an ‘Appy World’ with several mobile applications available to manage our day-to-day activities. With rapidly evolving technology, managing food allergies has become easier. There are several apps that tell you what is in your food, show you how to administer epinephrine, and identify safe food options when you’re traveling or away from home. Here are our top five picks for the best food allergy apps:

·    Sometimes it’s difficult to search for an ‘allergy-friendly’ restaurant while you’re travelling across the US. Download Allergy Eats, it offers a database of restaurants organized by city, zip code, or your current GPS location. With this app you can also review peer-ratings of the restaurants’ allergy-friendliness, and post your own ratings. This app is available in the iPhone and Android store for free. 

·         My Food Facts allows you to shop for groceries and identify food allergens in a product by simply scanning its barcode. All you have to do is create a personal profile that summarizes your food allergies. The app sends alerts to the shopper if food allergens are present in the scanned product, taking out the guess work. 

·        The My EpiPlan app includes everything from management to tips. It also has information on step-by-step use of an EpiPen. The app helps you keep track of which allergens you and your family need to avoid, and where your EpiPen (epinephrine) Auto‑Injectors are located and when they expire. The app is available in the iPhone and Android store for free.

·         iAvoid Food Allergy is a simple and user-friendly app designed for the food allergy community that helps to identify and avoid products and ingredients responsible for the eight most-common food allergies.

·         Allergy Journal allows you to track your food allergy symptoms and log what foods you are eating. The journal allows you to quickly scroll through all of the entries you’ve created, showing foods and symptoms in different colors for easy identification.

We would like to hear from you about the apps you use to manage your family’s food allergies. Do you have an app you love more than these? Please share it in the comments. 


Allergy-Friendly Easter Egg Hunts

Posted 4.2.15 | Nutrition Specialist

Easter egg hunts put the fun into Easter Sunday and are a great way to engage kids in physical activity. We LOVE egg hunts!  Here are great tips to plan your own allergy-friendly Easter egg hunt this weekend:

1.      A win-win-win trade in:  Have the kids participating in the egg hunt exchange plastic eggs for prizes of their choice.  Prizes can be anything! This way you don’t have to worry about food allergies, stuffing individual eggs and it’s a healthier option because it deducts excessive sugar.

2.      Let the clue come to you:Older kids can enjoy finding eggs filled with clues for a grand prize at the end of the hunt. The grand prize can be a basket with goodies like cool school supplies, small tech prizes or gift cards.

3.      Safe for all: It’s always better to be safe than sorry. If you plan to stuff the Easter eggs, make them all safe. Little ones can get shy while talking to adults who are not their parents. Keeping this in mind, keep all the stuffing allergy-friendly.

4.      Think beyond food treats: Non-food prizes can make great gifts inside or outside the Easter eggs. There is a wide variety of gifts for kids which include: mechanical pencils, tattoos, coloring books, boxes of crayons and cool erasers which you can distribute worry-free. These treats keep the little ones occupied and engaged in the egg hunt.

5.      Pre-planning for candy options: There are many allergy-friendly candy options available in the market for your little guests with food allergies. You can research on these options before hand by getting in touch with the parents of invitees for the egg hunt. Share the final list with all the parents to make sure all the candies listed are safe for all.

6.      Healthy finger foods:It doesn’t harm to have a few food items for the egg hunt. Fresh and thin cut veggies like carrots, celery and roasted peppers are safe and healthy.

With numerous special occasions and festivals each year, we are sure that kids with food allergies have learnt to advocate for themselves. Keep preparing your kids the same way. Neocate wishes its community a delicious allergy-friendly Easter! 



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About Us

Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.