Since I have been part of the food allergy world, I have seen the question about coconut get posted often. The main question is usually, "Is this a tree nut and should we avoid?" Post this question on Facebook and you will get a ton of comments regarding this subject.

Coconut is classified by the FDA as a tree nut and therefore all foods containing coconut by law must be listed as containing coconut or containing a tree nut. Coconut is really not a tree nut, but the FDA decided to call it one and confuse everyone. Some allergist say to avoid and some say not to. There are true coconut allergies, but you shouldn't just assume you can't consume coconut if you are allergic to tree nuts. Get tested and discuss this further with your board certified allergist.

This brings me to the reason why I decided to write this post. It seems that there have been some cases where manufacturing companies have labeled themselves as being tree nut free and then not disclosing that the item actually contains coconut. Most of us know that coconut is not a tree nut and most tree nut allergic are perfectly fine consuming it, but since it is considered a tree nut by the FDA and a tree nut is one of the top eight allergens then it must be labeled on the package. My family doesn't avoid coconut, but we do have some members within our No Nuts Moms Group that are very allergic and this can lead to a very serious reaction. So whether or not you believe a coconut to be a tree nut or not, it still needs to be labeled on a food item containing coconut. PERIOD! It is the law. If you have a coconut allergy, please be sure to investigate items a little further even if they are labeled tree nut free. If you find out a company is not labeling then let them know and also consider reporting them to the FDA.  

Helpful Resources:

Question: Is Coconut a Tree Nut?

Is Coconut Safe For People With Tree Nut Allergies?

Tree Nut Allergies

Report a Problem

Don't Go Nuts is a company that was created by one family's love for a family member
with food allergies.  Jane and Doug Pinto, co-founders, along with their 13-year-old twin daughters,
Lily and Mesa began a company that caters to families and their loved ones with peanut and
tree nut allergies. 

The family's food allergy journey began when Lily was diagnosed with life threatening food allergies to peanuts and tree nuts.  When Lily was three years old, she had a reaction to something that she had eaten and developed hives.  After getting her food allergy diagnosis, the entire Pinto family was extremely cautious, but even with their extra vigilance, Lily experience her first anaphylaxis reaction when she was eight years old from eating something that was mislabeled.  Thankfully, Lily was ok, but the
Pinto family's lives were forever changed.  Doug Pinto described this day in a blog by saying, "It was one of the times in my life that I was aware of my relationship to fear."  From that day on, the family needed to find away to transform Lily's allergy into help for others.  Jane Pinto said, "We want to be part of ensuring not only that a child doesn't lose their life due to a food allergy but also that every child lives an inspired life with it."  And Don't Go Nuts was born.

I recently had the great opportunity to speak to Jane Pinto, Co-Founder and CEO of Don't Go Nuts, a division of Pinto Barn, along with her dedicated staff.  It was such a pleasure speaking with a team of people just as passionate about food allergies as I am.  Don't Go Nuts currently has a full line of healthy peanut and nut free soy butters and energy bars in a wide variety of flavors.  I have had the energy bars and they are very delicious.  I shared some samples with some of my fellow food allergy moms and I am waiting to hear what they think.  During my call with Don't Go Nuts, they shared with me some of the exciting things that they have planned in the near future.  So I would keep your eye on this family and their company because they have some great things in the works for the food allergy community.     

13-year-old twins, Lily and Mesa are such an inspiration to so many young people out there.  The love in their family can be felt in this YouTube video.  Please watch and share their story.
Also, check out Don't Go Nuts Field to Fingers Nut Free Process, which is so important to Lily and so many other food allergic families. 
VIDEO NO LONGER AVAILABLE.

Mylan Specialty L.P. has introduced a new resource for dinning out with food allergies.  This new initiative is part of Get Schooled in Anaphylaxis. By going on the new section of the site, called “Dining with Severe Allergies”, you can find tip sheets, guides and travel-sized cards with advice on how to read food labels, food substitution suggestions, allergy-friendly recipes and grocery shopping tips.

There is also an interactive educational game called Supermarket Search.  This is a great game to do with your child and they can learn the importance of checking ingredient lists, even when cooking at home. Users select a character and then “shop” for ingredients needed to complete a delicious, allergy-friendly recipe. This is something that can be both entertaining and educational for your children.  You can even print the recipe when finished.

Get Schooled in Anaphylaxis™ and Get Schooled in Anaphylaxis Challenge™ are sponsored by and  trademarks of Mylan Specialty L.P. © 2013. All rights reserved. PAC13-0098

My family was scheduled to be on a flight from Denver to Newark on August 31, 2013.  In the waiting area before we boarded, there was a family of five eating peanuts.  I informed them that my child had an anaphylactic peanut allergy and we then moved to different seats in the waiting area.  I also asked them if they were on our flight.  Unfortunately, the kids weren’t  just eating peanuts, but throwing them up in the air and missing their mouths as well as crushing them on the carpet.  As my eight year old looks on with horrified eyes after I had already spoken to the parents, I started taking steps that I always do to try and keep him safe when we travel.  I asked United to make an announcement on the plane that there is a child with a life threatening peanut allergy in seat 8A and to refrain from opening peanuts around him.  This has been done as a courtesy on every United flight that I have taken.  They refused to do this again and again as I spoke to multiple people on the chain of command.  They stated that the flight crew was not going to make such an announcement and that this was their final decision.  My son, at that point, is crying as they have been less than tactful in front of him and he is saying that "I don't want to die on a plane".  Of course, we refused to board.  The plane took off and then they took over two hours to get our luggage to us.  They could not have been less helpful.

To bring an eight year old to tears and to terrorize him is unacceptable and needs to be published.  United Airlines should be ashamed of themselves.  I have since done some research and found out that, after a flight crew on United made the same refusal to a woman in May, she subsequently went into anaphylaxis on the plane and the plane had to make an emergency landing.  The person who opened the peanuts, when interviewed, said if an announcement was made, they never would have opened them.  All we wanted was basic awareness and decency. I have since filed a complaint with the Department of Transportation.  My goal, however, is to bring awareness to the public of the perils of traveling with a child with life threatening allergies.  Losing a child to a food is just so senseless.  The public needs to be aware of the seriousness of food allergies.  Please see Natalie Giorgio's story here.  What a sad story.  Food allergies can kill.  The inconvenience a person might feel who really wants to eat that Reese's Peanut butter cup pales in comparison to the fear of what it must feel like to have an allergic reaction to those foods.

There are people who say that individuals, like my son, simply have to take great risks when using public transportation.  I have to say that I strongly disagree.  We can minimize these risks so easily.  So why should we be castigated by the airlines for trying to do so.

I have since been reading online and speaking to other parents with allergic children and am shocked to hear so many similar stories.  It seems like parents of children with food allergies are being "bullied" by the airlines.  I have been told about families that have been refused entry on a plane just for informing the crew their child has an allergy.  So if you inform the crew you
run the risk of being thrown off.  There are also many parents I have talked to that just feel completely terrified every time they fly (especially on United).  Funnily, United has just started a campaign using the old slogan "fly the friendly skies".  I think its time that they were exposed for the "unfriendly skies" that families with allergic children and adults with food allergies face.  Not only is the environment unfriendly but the staff is rude, unsympathetic and downright mean spirited.  Jet blue and possibly Delta by contrast will make an announcement and will create a buffer zone to keep your child safe.  They are empathetic and have always taken my son's allergy seriously.  So there is a kind and safer way to behave and create safer flying policies.  United would do well to emulate them.

A change needs to happen.  Children and adults with life threatening allergies need protection.  We are being "bullied".

The Perrin Post also published a story about this incident.  Read the story here.

Sign this Petition Requiring Airlines to Institute a
Customers Bill of Rights for Children and Adults Flying with Food.