The FDA cares about reducing the incidence of misleading labels

Last weekend I attended the FARE 2105 Food Allergy Conference in Long Beach.  It was fantastic!  Being a Food Allergy nerd, it’s not often I learn something new, but this conference was illuminating, even for us old-timers!

One talk that was really interesting was Under the label:  Understanding food labeling laws, manufacturing, and risks by Steve Gendel, PhD.  Steve worked at the FDA as their Food Allergen Co-ordinator until last year, so he is very knowledgeable on this topic.  So what did I learn that was so mind-blowing?  In essence, that the FDA intends for food labels to be “true and not misleading”, even voluntary cross-contact warnings!

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Although the FDA does not regulate voluntary cross-contact warnings
(such as may contain), the FDA does care that foods labels
– including cross-contact warnings – not be misleading.

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So for example, a food labeled as NUT FREE should contain zero allergen, and should not include any contradictory claims, such as MAY CONTAIN NUTS.  Unfortunately I have picked up a “Nut-free” product only to turn it over and read MAY CONTAIN TRACES OF.  This drives me crazy, because most people who pick up the food will assume it has zero nuts and will be safe for a nut-allergic person!  It’s a great relief to know that “free from” labels are taken very seriously by the FDA.

Another case of a misleading product label, is one that has an incomplete list of allergens in the MAY CONTAIN statement.  For example, a product may have a label that says MAY CONTAIN: SOY, but when you call the manufacturer to check, the manufacturer tells you that the product also may contain Wheat too!

What should I do?

If you find a product you think has a misleading label, Steve recommends you notify:

1. The manufacturer.
2. The supermarket chain you bought it from.
3. The FDA Consumer Complaint Co-ordinator in the district where you live.    You can look up your local coordinator at the FDA web site.

The more people who contact the FDA to report misleading labels, the more the agency becomes aware of the trends, and so the greater liklihood the labels will be corrected.  I am so very relieved to find out we have a way to impact some misleading may contains labels.

2015 food allergy Conferences & Camps!

FARE conference May 16-17, 2015 Long Beach, CA Adults & Teens Register here!	“The FARE National Food Allergy Conference… gathering the country’s leading food allergy experts and members of the food allergy community together for a weekend of world-class programming.  The conference provides a unique opportunity for individuals and families managing food allergies, caregivers, school staff, health care professionals and others interested in the field to gather as a community and learn about advances in food allergy research and advocacy…and much more. “
FAACT CAMP TAG CA in June, NJ in July Day Camp for kids  w/food allergies & siblings Ages 4-12 years. Big Bear City, CA June 15-19 Williamstown, NJ July 27-31	“Camp TAG provides a safe place for children with food allergies and eosinophilic disorders and their siblings to have fun – with no worries about allergic reactions – and meet other children who share similar experiences. It is a bonding and empowering week for all campers, including parents.  Camp TAG is 95% fun and 5% educational, with age-appropriate activities and games each day on food allergies, anaphylaxis, nutrition, the emotional impact of living with food allergies (for children with food allergies and their families), and how to stay safe at school and at home.”
Camp Blue Spruce August 16 – 22 Portland, OR Sleep-away camp for kids w/food allergies & siblings Ages 9-17 years Register here!	“Get ready for SIX DAYS of camp.. at Camp Tapawingo in Oregon’s beautiful Coast Range!  Camps are an excellent way for children to become independent, develop new friendships, learn about teamwork and grow as individuals.   Kids attending Camp Blue Spruce have a true camp experience without the worry and anxiety they experience daily with their food allergies. Camp Blue Spruce parents can be worry-free, too!”
FAACT Teen Summit October 9 -11, Las Vegas, NV Teens & College students aged 11-23 Check the FAACT web site for registration information!	“The Teen Conference is all about teens and college students, their siblings, and their parents. The weekend offers an informative program full of fun activities. Teens will learn about managing their food allergies and, more importantly, spend time with peers who have food allergies (and siblings who do not). Siblings are also affected when a family member has food allergies. Our Teen Conference is a safe place for them to discuss their concerns with a group who not only understands but can share their own experiences, advice, and solutions.”
FARE Teen Summit, November 13-15 Washington DC For people w/food allergies ages 11-22, siblings & parents Check the FARE web site for registration information!	“This yearly event gives teens living with food allergies a chance to meet with other teens from across the country… we will cover topics that are relevant and important to them.  Teen Summit participants get to spend time with people in their own age group through special breakout sessions for middle school and high school, plus evening social activities that are food allergy friendly and fun! We also will have a sibling and parent track for family members to share their experiences and learn from some of our great speakers.”
FABlogCon, November 13-15, Denver, CO For Adults Register here!	“The third annual Food Allergy Bloggers Conference is open to ANYONE managing, living, or caring for those with dietary restrictions- be it food allergy, or celiac disease. Our event will have something for bloggers and caregivers alike! We can’t wait to see this November! ”

 

Unsung heroes, and role models!

Food Allergy community leaders, Aleasa Word and Caroline Moassessi (Grateful Foodie), have encouraged Cyrus Moassessi – a young man with food allergies – to add to the already recognized International Men’s Day on November 19th.  The addition is to recognize men who are role-models in our food allergy community.  Cyrus is doing this through a Facebook group – The International Men of Food Allergy.

When I heard of this event, I thought about all of the wonderful role models our community has – including Kyle Dine (international musician and all-round good guy), Dave Bloom (from Snack Safely), Mike Spigler (from FARE, who goes above and beyond – he works as hard as a food allergy dad but isn’t one!)  Then I started thinking about who has personally affected me the most.

As a support group leader for the last 7 years, I’ve spent hours preparing for talks, driving to/from talks, giving talks, developing web sites, working online to support my community, helping food allergy legislation pass, and more.  Throughout all of that, one person has unfailingly given his time to help me, so I could help the food allergy community – my husband.

Without his support for the food allergy awareness, education and advocacy work, our local community and the state of California would not have been as educated about allergies, nor as prepared.  Instead, our community is safer.

In closing, I’d like to recognize the unsung hero of food allergies, who is in the background working so very hard –  the dads, granddads, uncles, big brothers and cousins who help every day to keep not only their family safe, but all of our community safer.  To all of you – you know who you are – Thank you. You are amazing, and you are a wonderful role model for the next generation of food allergy families!

Cross-contact or cross-contamination?

Up until a few years ago, people used the term cross-contamination when a “safe” food became “contaminated” with an allergen and so became unsafe to eat. These days FARE and others use the term “cross-contact” for this instead.

It’s important to know when you should use the term cross-contact, and when you should use cross-contamination!  Here’s why!

What is cross-contamination?
Cross-contamination is the term used when a food has been exposed to bacteria, making the food unsafe to eat.  For example, when a salad is prepped on the same chopping board as a raw chicken, without the chopping board being properly washed and sanitized in between: the salad then becomes contaminated with bacteria.

What is cross-contact?
Cross-contact is the term used when a safe food has come into contact with an allergen, making the food unsafe to eat for someone allergic to that allergen. A great example of cross-contact is when utensils that have been used to make a PB&J sandwich are reused – without being properly washed – to make a plain jelly sandwich for a person allergic to peanut. In the picture, there are a whole bunch of ways cross-contact can happen during sandwich prep – the chopping board, the knife, or the jelly itself may be contaminated if any time after the jar was opened, a knife was dipped into PB, then dipped straight into the jelly without being washed with soap first!

It took me a while to switch too.. and now it drives me nuts (!!) when people use cross-contamination instead of cross-contact.  But there is a good reason to switch!  Chefs are trained to know that you can make a food contaminated with bacteria safe to eat, by cooking it at a high temperature which kills the bacteria.  When you use the term cross-contamination with respect to food allergens, it’s possible untrained kitchen staff will think you can cook an allergen out of a food, just like you can bacteria – and with food allergens, that just isn’t true!

And always fully explain what you mean by cross-contact – many restaurants haven’t had food allergy training, so you need to be specific – be clear about ingredients, may-contains, cross-contact during storage, prep, cooking, serving.

And if that’s not enough of a reason, contamination has 6 more letters to type than contact!

TGFTFG The Food Allergy Field Guide!

FARE have recently released a great resource for people new to food allergies (and for those who want to learn to be safer!)

If you know of anyone newly diagnosed, or not aware of basic food-allergy safety information, please let them know about this resource.

The Field Guide includes information essential for living with food allergies – everyday – including  a getting-started checklist, essential information you need to know,  tips for preparing others to care for children with food allergies, reading labels, avoiding allergens, avoiding cross-contact, eating out, and more!

One little addition to the packet I didn’t mention is a fridge-magnet to remind your family and friends of anaphylaxis symptoms!

And a door hanger for reminding us to always bring Epi everywhere (by Epi, I mean Epinephrine!)

FARE have printed (courtesy of Mylan) more than 65,000 packets of TFG that are being distributed at allergists’ offices nationwide.  If your allergist doesn’t have a physical copy of TFG, you can download a free e-version from FARE www.foodallergy.org/field-guide.

All I have to say is TGFTFG (thank goodness for the field guide!)

P.S.  I also have to disclose that I am honored to be a part of the FARE Ed Work Group that contributed to this project (including my suggestion of the aforementioned fridge magnet!  It’s the important things, right? ;))

2014 – A year jam-packed with Food Allergy Conferences!

Wow, there is a lot of choice in food allergy conferences this year.  What a great problem to have – choosing which conferences to attend!

The biggies are from our national organization, FARE (Food Allergy Research & Education.)  This year, FARE will hold a single national conference; and from what I hear it’s going to be a powerhouse, including talks from key experts and researchers, and this year for the first time, community experts.   I heard the teen summit last year rocked, and this year my child will be old enough to attend.  The FABulous ladies from FABlogCon are having their second FA Bloggers conference.  Last year’s was amazing, and had a wonderful atmosphere of kindness, empathy and support.  The new kids on the block, FAACT (Food Allergy & Anaphylaxis Connection Team) will host four *local* one-day conferences covering many different topics.  And finally, a food allergy awareness convention for those with food allergies and celiac disease!

Right now, my plans include the FARE conference, the FABlogCon, and hopefully the FARE TEEN summit!  I just wish I had the time and finances to go to all of these great events.  Here is some more information that might help you decide.

FARE National conference June 20th-22nd, Rosemont IL

About:   The conference is a great opportunity for patients, families, caregivers, school staff, and health care professionals to gather as a community to learn the latest in food allergy research, best practices, and to network with one another.  There will be multiple tracks that will appeal to both newly diagnosed families and those who are very experienced with food allergies. The sessions will be include a mix of seminars, interactive sessions, forums, and experiential programs for anyone age 11 and up. Full conference and 1-day registrations will be available.

Location:  Hyatt Regency O’Hare in Rosemont, IL  A discounted room tickets can be booked here: https://resweb.passkey.com/go/foodallergy. FARE has also negotiated a discounted parking rate of $10/night.
Date: Friday June 20th – Sunday June 22nd
More info: www.foodallergy.org/conference

FARE Teen Summit, Washington DC

About:  The Teen Summit is a 3-day event that gives pre-teens & teens (age 11-19) living with food allergies a chance to meet with other teens from across the country. Topics important to teens are covered:

Social experiences and peer pressure / dining out and traveling / knowing how to be your own advocate / friendships and dating / navigating high school / preparing for college and more!

Location:  Hyatt Regency Washington on Capitol Hill
Date:  November, 2014
More info: www.foodallergy.org/teensummit

Food Allergy Bloggers Conference September 26th – 28th, Las Vegas NV

About:  A great way to learn about food allergy blogging, and to connect in a meaningful way, with others living with food allergies.  Here are more descriptions from attendees of last year’s conference:  foodallergybloggerconference.com/2013/11/12/fablogcon-review-round-up

Location: Southpoint Hotel, Las Vegas, NV
Date: Friday, September 26, 2014 at 6:00 PM – Sunday, September 28, 2014 at 9:00 PM
More info: foodallergybloggerconference.com

Food Allergy & Anaphylaxis Connection Team

About:  FAACT’s annual Food Allergy Conferences provide full day of educational sessions led by leading medical professionals and food allergy advocates. The conferences offer education and support for parents, grandparents, school personnel, caregivers, healthcare professionals, and teens.

Locations & Dates:

• Anaheim, CA, Saturday, September 13, 2014, Disneyland Hotel
• Atlanta, GA, Saturday, September 20, 2014, Evergreen Marriott at Stone Mountain
• Denver, CO, Saturday, October 11, 2014, The Denver Marriott City Center
• Philadelphia, PA, Saturday, October 18, 2014, Philadelphia Marriott Downtown

More info: www.foodallergyawareness.org/programs

Food Allergy and Celiac Convention November 22nd

About:  Disney is well-known for being one of the top food allergy and gluten free locations in the world, so we couldn’t think of a better spot to host an event dedicated to awareness of food allergies and celiac disease!  Hosting this event at the Walt Disney World Resort yields the opportunity to collaborate with leaders in the food allergy industry; all of the food is created especially for the event by Disney’s Catered Events, and along with other leaders in the industry, various members of the Disney culinary team will be integrated in our workshops and speakers.

Location: Walt Disney World, Coronado Springs Resort.
Date: Saturday November 22nd
More info: celebrateawareness.com

That’s all, FA Folks!

News: President Obama signs School Access to Epinephrine Act in to Law! .. Wait! What does this mean?

What does the law do?

It encourages States to mandate stock epinephrine, by giving them a financial incentive.

If a state enacts mandatory stock epinephrine, the state is given preference to receive asthma grant funding (Children’s Asthma Treatment Grants Program and other federal asthma programs.)

All public elementary and high schools in the state must maintain an emergency supply of epinephrine, must permit trained school personnel to administer epinephrine, and must have a plan for ensuring trained personnel are available to administer this medication during all hours of the school day.  The bill text is beta.congress.gov/bill/113th/senate-bill/1503/text

The law also requires the State’s attorney general to review applicable civil liability protection law to determine if the law has adequate protection for the trained school personnel.

If it’s not mandatory, why is this important?

The passage of this bill is recognition on a Federal level of food allergy, and of emergency anaphylaxis first aid, as issues of importance.  It gives credence to the need for epinephrine in schools, and so paves the way for States to enact mandatory bills.  In the absence of mandatory state laws, it is encouragement and guidance for local education authorities and schools to understand that stock epinephrine is of value.

The passage of the law also provides more momentum for the food-allergy community.  It gives us inspiration that we can enact change on federal, state and local levels when we all work together.

Share the video!

When signing the law, President Obama explained why it is important “This is something that will save children’s lives.”  Mr. Obama also said that one of his children has a peanut allergy, and that making sure epinephrine is available in case of emergency in schools “is something that every parent can understand”.  Watch the signing:  cbsn.ws/18tqTOr

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
– Attributed to M. Mead

Opinion: Keeping kids safe – until they’re ready!

My post is a contrasting perspective to Dr Hooper-Bui’s opinion on how to keep allergic children safe at school.  The article was published in online newspapers, such as our local Press Democrat.

Food allergies are life-threatening, but most people confuse them with food intolerances that only cause mild discomfort.  They’re very different!  As the parent of a child with food allergies and food allergy educator, I disagree with much of Dr Hooper-Bui’s article.

Realistic expectations

Courtesy of cliftonpolice.org

Dr Hooper-Bui’s main idea is to teach children to be self-sufficient and self-advocate, which is an admirable aim. Where our opinions differ is how to do this, and the age a child is ready for this level of responsibility.  The suggestion that having food allergy accommodations at school to keep kids safe will  make these kids unprepared for the real world is illogical.  Using the same flawed logic, we should also remove crossing guards at schools because kids will never learn how to cross the road with guards present.

Most food allergy parents would consider it unsafe for a young child to be solely responsible for his/her own food allergy management, to read labels totally independently, and to fend for him/herself at school.  What we teach the child and our expectations on their ability to keep themselves safe, are age-appropriate.  As children become capable they take on more responsibility and need fewer accommodations.  In fact, the national Food Allergy Research and Education organization’s Safe@School program advocates just the kind of school accommodations Dr Hooper-Bui says are not necessary or desirable.

Children have to be at school, and unlike adults, they can’t decide to leave the class to get away from an allergen or tell a child to wash their hands.  School accommodations allow a child to learn in a safer environment, while buying them time to grow and be ready to handle their allergy themselves.

Empathy and compassion

Courtesy of wholeheartedleaders.com

Dr Hooper-Bui  doesn’t want her child’s allergy to affect other children.  This isn’t realistic
because people make accommodations for other’s health and well-being, every single day.  The difference is we don’t notice we’re doing it.  For example, in California people can’t smoke in public places.  When this was first suggested it caused an uproar about infringement of personal rights.  Children are usually happy to make accommodations to keep others in their class safe, and the important lessons they learn are empathy and compassion.

A disability?

Did you know that food allergy is considered a disability because it affects major life functions like breathing and eating?  The law grants students with disabilities a Free Appropriate Public Education (FAPE) under Section 504 of the US Rehabilitation Act.  “Appropriate” in FAPE means a public school makes accommodations specifically chosen for that child to allow him/her to be fully included in all aspects of learning.  The accommodations are based on the child’s unique health needs (including allergen sensitivity) and the child’s abilities.

It’s nuts!

It’s also confusing why schools restrict some foods like nuts, but not others.  Many people say if you’re going to ban nuts, then other allergens like wheat will be next.  There are two reasons why nuts are the most-restricted.  The most important reason is the majority food-allergy related deaths in children are caused by peanuts and tree nuts.  The second major reason is nut oils are sticky, and are difficult to clean from surfaces and hands (research found peanut protein stays on surfaces for two years, if not properly removed.)

Making a positive impact

Courtesy positiveimpactmagazine.com

Unfortunately, opinions such Dr Hooper-Bui’s sometimes influence schools against making accommodations appropriate to a child’s specific needs.   Instead of questioning necessary and legally supported school accommodations, our energy as a food allergy community would be more positively used informing the public on food allergy facts, explaining what it like to live with food allergies, and advocating for laws to make people with food allergies safer.

An example of such a law is California Senate Bill 669: Emergency Medical Care: epinephrine autoinjectors.  This law allows trained lay persons to own and use emergency epinephrine injectors to treat life-threatening anaphylaxis!

Please contact Governor Brown to encourage him to sign this bill that will save the lives of Californians who have allergies to food, insects and medicines!  For the subject, choose:  SB00669\Emergency Medical Care: epinephrine autoinjectors.

It might just help prevent a tragedy such as Cameron Espinosa, a 12 year old middle-schooler who died of an allergic reaction to fire ant bite.  My heart goes out to Cameron’s family and friends.

Resources: The Food Allergy Book – from NEAHIN

The Food Allergy Book: What School Employees Need to Know (English, Spanish), is a booklet from the National Education Association, Health Information Network.  

The booklet covers the basic information all school employees should know about food allergy.

Topics covered include:

• What a food allergy is, and explains it is different from an intolerance.
• Signs and symptoms of an allergic reaction, and how chilren at different developmental levels will communicate their symptoms differently
• Responding to an anaphylactic emergency promptly is important,
• Managing food allergies at school  needs a team approach
• School should develop and document a school-wide food allergy management and prevention plan
• Kids with allergies need individual emergency food allergy plans
• The school employee’s role in responding to an emergency
• How to prevent reactions

This booklet is available for download, and you can also order the printed booklet, at no cost (except postage.)

Opinion: Playdates and Birthday parties with food allergies!

My son is nearly 10 (double digits!), and despite not seeing myself as a helicopter parent, he has not yet attended a birthday party or play date without one of his parents present.  

This week, L received an invitation to “video game” birthday party, to be held at his friends house.  Instead of immediately thinking “it’s too hard to deal with”, or “he’s not ready yet”, I started to wonder whether this might be the right time to let him have a little freedom.  In the past, it was “too hard.”  I have found it very stressful to even consider approaching a parent to ask so many questions for what should be a simple event – it felt like a huge imposition, and a huge negotiation.  This time I felt like I’d like to take the chance.

L does not eat foods that do not have a label, does not eat foods in places that have not been verified as “food allergy aware”, and asks questions.  All good!  I have spoken to L about the party, and the rules we would have, and he’s OK with them, and feels ready.

The rules we discussed were that he would:

• carry a single Epipen
• bring food and treats from home, and that he would only eat this food
• tell the supervising parent if he feels sick

So next stop was to talk with the parents of the birthday boy.  Supervising allergic kids an the possibility (however unlikely) of needing to use an Epipen  is not a responsibility some people are comfortable with.  Here’s the email I wrote to the parent:

“Hi xxx,

Thank you for inviting L to D’s birthday party. As you probably know, L has severe food allergy to nuts and peanuts. L visiting at someone’s house takes a little work, and I’d just like to talk with you about whether you guys are OK with what we would need. We’ve never done this before, so we’re kinda working our way through it.

What we would need to do is:

– ask if you’re comfortable with learning/refreshing your memory with how to use an Epipen, and also reading and becoming familiar with L’s food allergy action plan (for emergencies only)

– ask if you’re planning on serving any foods with peanuts or tree nuts

– ask if it’s ok for L to bring his own food and treat
Even though pizza should be safe for L, if the pizza crust or toppings were made or packaged in a factory with other nuts, it could be enough cross-contact to cause a reaction. Food allergies aren’t logical, an even a tiny amount of allergen left on a spatula can be enough to cause a severe reaction. L having a reaction is unlikely, but we really don’t want to chance it.

I know preparing for a birthday creates enough headaches all on it’s own, without adding allergies to the mix!  So if any of this makes you feel at all uncomfortable, or is an imposition, I totally understand.

Best,
Connie”

The parent was kind enough to respond (within 5 minutes!) and tell me her father has an Epipen, that her husband would be happy to have us over a little earlier to go through the FAAP with him (I’ll also bring along a trainer.)  She also told me where the pizza was coming from, and that the cake was going to be made from scratch, but that she was also ok with L bringing his own.

Yay!

p.s.  I will also give the supervising parents the an Epipen Two-Pack, with FAAP, and my mobile phone number 🙂

p.p.s  A good friend also suggested that I could have offered to help out at the party (that may make the parents more comfortable)