Food Allergy Living Blog




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Find Help Here – Some Useful Links

Posted 5.29.15 | Nutrition Specialist


We know that managing food allergies is very challenging and you need as much information and help that you can find!  In order to assist you, we have compiled a list of resourceful food allergy-related websites including educational sites, blogs, advocacy groups and nonprofit organizations.


Help for Parents

Kids with Food Allergies is a nationwide nonprofit organization offering online food allergy support groups for families raising children with food allergies. Parents love their online food allergy support groups, information, news, and allergen-free recipes.

GIKids provides easy to understand information about the treatment and management of pediatric digestive conditions and nutritional disorders for children and parents.

Education and Advocacy Solutions, LLC provides an educational resource for parents, advocates, and school personnel who seek accurate and current information about advocacy strategies. Their mission is to promote social normalcy, safety and advocacy for children with food allergy, asthma and other special healthcare needs.

Go Dairy Free is a website for information on the dairy-free diet. A variety of dairy-free recipes and product reviews are available.

A Mother's Journey is an informational site for parents to learn about food allergies. Resources provided can help parents talk to their child's doctor about potential food allergies.


Eosinophilic Disorders

CURED is a not for profit foundation dedicated to those suffering from eosinophilic enteropathy, which includes eosinophlic esophagitis, eosinophilic gastroenteritis, eosinophilic colitis and other eosinophilic disorders.

APFED is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.


General Allergy Information

Food Allergy Research & Education (FARE) is a nonprofit organization that was formed in 2012 as the result of a merger between the Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI).  FARE works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. 

Asthma and Allergy Foundation of America (AAFA) is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research. AAFA provides practical information, community based services and support to people through a network of Regional Chapters, Support Groups and other Local Partners around the U.S.

The American Academy of Asthma Allergy & Immunology (AAAAI) is the largest professional medical organization in the United States devoted to the allergy/immunology specialty. The AAAAI is devoted to the advancement of the knowledge and practice of allergy, asthma and immunology for optimal patient care.

The National Institute of Allergy and Infectious Diseases (NIAID) is the lead Institute at the National Institutes of Health for research in food allergy. They support efforts to help better understand, prevent, and manage this disorder. NIAID supports food allergy research, from basic research in allergy and immunology to clinical trials that test new strategies to treat and prevent food allergy.


Reflux

The Reflux Rebels is a site comprised of the experiences of caregivers who share the common thread of infant reflux. It is here to provide some basic information that has been of help to other families as they advocated for the most effective treatments for children.

InfantRefluxDisease.com offers a website and support group for parents living with, treating and managing, a baby or child living with infant reflux and/or pediatric GERD.


Crohn’s and Colitis

Crohn's & Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis.

 

What websites have you found helpful in answering questions or providing information about managing food alleriges?

-Kathleen Smith, RDN, LDN

Image source


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


Be Prepared with Allergen-Free Snacks!

Posted 5.14.15 | Nutrition Specialist


For many of us, summer is a time for traveling. Whether you’re spending a day at the pool or a week at a camp site, finding portable snacks for you or your child with multiple food allergies isn’t always easy. However, a little planning can go a long way!

Knowing the chaos that ensues in your daily life, I wanted to save you some time by providing various allergen-free snack ideas. Here you’ll find a list of snacks you can take on-the-go, all of which are free from the top eight allergens (milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soy), unless otherwise noted. As always, please read each ingredient label and always contact the manufacturer if you are unsure as to whether the product contains your or your child’s allergen.

“Cooler-worthy” snacks

  • Fresh fruit – banana, apple, plum, peaches, the list goes on! Wash some berries (blueberries, strawberries, raspberries, blackberries) or cut a melon into bite-size pieces and store in a to-go container.
  • Fresh veggies – celery, baby carrots, bell pepper strips, raw cauliflower, broccoli, again the list goes on!
  • Tribe Hummus – Hummus goes great as a dip with those fresh veggies. Tribe claims that their hummus does not contain any of the top eight allergens. https://www.tribehummus.com/
  • Salsa – whether it’s homemade or store bought, this is another “dip” option for those raw veggies.

“Throw-straight-into-your-bag” snacks

  • Popcorn
  • Fruit cups
  • Homemade trail mix – Rice or Corn Chex/Kix, dried fruit, seeds (such as pumpkin or sunflower seeds).
  • Brown rice cake with sunflower butter.  Sun Butter offers sunflower butter in single serve packets. http://sunbutter.com/products/
  • Dried fruit – try a mix to keep it interesting! Ex: Raisins, dried cranberries, dried mangoes, dried pineapples. Create a mixture that sounds most appetizing to you!
  • Corn chips – Pair these with salsa for a great poolside snack. Check out Way Better Snacks which manufactures a variety of sprouted chips that are allergen free. Please note – these products are made in a facility which uses soy, sesame seeds, flaxseed, and dairy. www.gowaybetter.com
  • Enjoy Life products – From cereal to chocolate bars, this company offers a wide array (and when I say wide array, I mean it!) of allergen-free products. http://enjoylifefoods.com/
  • Plum Organic mash ups –These grab-and-go pouches come in a variety of flavors consisting of pureed fruits and veggies. Try throwing these in a cooler for a cool, refreshing snack. http://www.plumorganics.com/products#mashups
  • Libre Naturals - Here you’ll find granola bars, granola, and oatmeal cups all made in a dedicated facility free of all the top food allergens. http://librenaturals.com/
  • The Good Bean – Roasted chickpeas? Yes please! The Good Bean offers roasted chickpeas made in a dedicated nut-free facility and certified gluten-free. http://www.thegoodbean.com/
  • The Real Deal Snacks – Here you’ll find corn pretzels and veggie chips (original and sriracha flavor). Yum! http://www.therealdealallnaturalsnacks.com/

Sweet Treats

This certainly isn't a comprehensive list of ideas or all of the companies that offer allergen-free snacks. Are there any allergen-free snacks that you or your child enjoys that are not on this list? If so, we’d love to hear them!

-Kendra Valle, RDN

http://www.eatingwithfoodallergies.com/allergyfreesnacks.html

Image Artist: Srikanth Jandhyala


E-D-U-C-A-T-E with the National Eosinophil Awareness week

Posted 5.14.15 | Nutrition Specialist

With the efforts of American Partnership for Eosinophilic Disorders (APFED), in May 2007, the House of Representatives passed HB296, designating the third week of May as the National Eosinophil Awareness Week (NEAW). The purpose of NEAW is to create awareness and educate the general public and the medical community with Eosinophil-associated diseases. These diseases are rapidly emerging as a healthcare problem worldwide. But many patients suffering from these disorders go undiagnosed for years due to a lack of information or awareness of these diseases. For a robust factsheet that will enable you to learn more and share information on Eosinophil-associated diseases, please visit: http://bit.ly/1EtkJy3

Across the nation, patients, caregivers, healthcare professionals, friends and family will prepare for NEAW which kicks off from May 17-23 this year. Not sure how you can help? APFED has designed a number of ways for you to get involved http://bit.ly/EosinophilAwareness

The theme for NEAW is to E-D-U-C-A-T-E (Educate, Donate, Unite, Change, Awareness, Thank, and Engage). Each topic corresponds with a list of suggested activities for each day of the awareness week. To view suggested activities and accompanying resources that can be used, please visit this page on the APFED website http://bit.ly/EosinophilAwareness.

These diseases are unknown to many, and with the resources offered by APFED you can start small. The small act of changing your social media profile picture can engage your personal networks by encouraging conversations that will lead to the awareness of Eosinophil-associated diseases.

Tags

food allergies  |  food allergy  |  EoE


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?


Prepare for food allergy emergencies

Posted 4.24.15 | Nutrition Specialist


A box of bandages just won’t do for a food allergy crisis. Even diligent efforts at allergen avoidance can be thwarted. You never know when a severe food allergy reaction can occur and require emergency response actions. Serious reactions are often unexpected, sudden and require immediate attention. Time is of the essence when there is a risk of an anaphylactic reaction, an extreme, often life-threatening allergic reaction. So like Scouts, its best to “be prepared” with both plans in place and an emergency kit. Following are some suggestions for both.

Plans

  1. Wear a food allergy awareness bracelet
  2. Prepare an Emergency Action Plan
  3. Schedule Calendar alerts for updating allergy-related information and Emergency Kits

Emergency Kit

  1. Decide where emergency kits are needed: home, school and travel/car
  2. Store kits in a temperature-controlled area
  3. Use an easily accessible, durable case that is clearly marked
  4. Supplies:
  • 2 epinephrine auto-injectors, if prescribed
  • Oral antihistamines
  • Small tube of hydrocortisone ointment (for topical application)
  • Fast acting asthma medication (if prescribed)
  • A copy of your Emergency Action Plan
  • “IF FOUND” info card for the emergency kit to be returned

Supply sources suggestions:

Bracelets- Fashionable food allergy bracelets are available that will suit the needs and style of anyone. Consider your local pharmacy or take a look at these website offerings:

  1. Food allergy Research and Education (FARE) has an online store with bracelets and other emergency-related supplies 
    https://store.foodallergy.org/ProductDetails.asp?ProductCode=MBAND5
  2. Allerbling bracelets are both an educational tool and conversation piece
    http://www.amazon.com/Allerbling-Food-Allergy-Awareness-Bracelet/dp/B0058KDN6U
  3. Medicalert has a variety of choices
    http://www.medicalert.org/product/catalog/medical-ids/youth-kids/bracelets

Emergency Action Plans can be found on a number of allergy-related websites. Here are several sources to consider:

  1. Food Allergy Research and Education website
    https://www.foodallergy.org/document.doc?id=234
  2. Food Safe Schools Organization website
    http://www.foodsafeschools.org/FSAG_CD/Resources/FAAN/Food_Allergy_Action_Plan_English.pdf
  3. St. Louis Children’s Organization website
    http://www.schoolwebdata.com/deerfieldwi/docs/Health-Food%20Allergy%20Plan.pdf

What do you keep in your food allergy emergency kit?

-Jody L. Benitz, MS, RDN


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.

 


10 Tips for Spring Cleaning Your Home to Control Allergens

Posted 4.22.15 | Nutrition Specialist

The sun is out, the weather is warming up and it’s time to open your windows to the sun and beautiful spring. That said, spring cleaning is on the horizon as well. Whether you like this process or not, it’s necessary for allergy sufferers. While it is impossible to make your home completely allergen-free, below are 10 tips to clear most of allergens from your home:

1.       A well-ventilated house and non-leaking ductwork is the first vital line of defense against allergens. Use HEPA (high-efficiency particulate air) filters in your air-conditioning systems and vacuum cleaners.  Don’t forget to change filters in air conditioners, vacuum cleaners, vent registers, air purifiers and dehumidifiers.

2.       Dust is the most common cause of indoor allergies. Use a wet or treated cloth that attracts dust, minimize dust-catching clutter and clean dusty surfaces regularly so that dust doesn’t have a chance to accumulate.

3.       Vacuum your house thoroughly reaching every nook and corner. Try to vacuum your house atleast once or twice a week. We recommend using vacuum cleaners where you don’t have to replace filters frequently.

4.       Clean the clutter from your house. The less stuff in your house, the fewer places for allergens to hang out.

5.       Dust mites thrive in bedding. At least once a week, wash pillowcases, sheets, and blankets in very hot water and dry them in a hot dryer to kill dust mites. 

6.       Your bathroom is to mold what your bedroom is to dust mites. Be sure to fix any leaks and clean walls with a nontoxic bathroom cleaner.Run an exhaust fan after you take a shower, and replace any bathroom wallpaper with tile or mold-resistant paint. 

7.       If you have pets, vacuum frequently and wash your pet once a week.

8.       Keep your windows closed when pollen counts are highest: in the early morning hours, between 10 a.m. and 3 p.m.

9.       Maintain the humidity level in the house at about 40 percent to keep mold and dust at bay.

10.   Get rid of old rags, newspapers, clothes, other porous items.

Finally, we want you to be safe from allergens while spring cleaning. Consider wearing an allergy relief mask while cleaning to protect yourself from fumes, dust, and allergens.

Do you have any spring cleaning tip that we missed? We would love to hear from you.

 


Exciting News in Pennsylvania

Posted 4.21.15 | Neocate Admin

We are elated to announce Pennsylvania will be joining the list of mandated states to provide insurance coverage for amino acid-based formulas.

Click here to learn more about the Medical Foods Insurance Act of Pennsylvania



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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.