Category Archives: Interviews

Emotional Aspects of Food Allergies, Food Allergy, Food Allergy & Families, Interviews

Not Today, Butterflies! A Book About Food Allergy Anxiety

A great new book by Nicole Ondatje was published this week. Read below for an interview with Nicole about this great new children’s book!

Nicole, you have a new book out called, “Not Today, Butterflies! A Book About Food Allergy Anxiety.” What gave you the idea to write this book?

My nine-year-old daughter has severe anaphylactic food allergies. At age four, she started experiencing anxiety about her annual allergy skin prick tests, attending birthday parties, visiting family, and eating at restaurants. Searching online, I could find children’s books regarding food allergies and a handful of children’s books regarding anxiety, but there weren’t books that specifically and directly addressed food allergy anxiety in children. So, I started researching techniques to help children manage their anxiety, and testing which approaches helped my daughter the most.

 When she turned five, my daughter enrolled in a clinical trial for the peanut patch, adding blood draws and food challenges to her long list of anxiety-provoking situations. My approach was to help her write and illustrate a story in which she overcame her fears of going to her peanut patch appointment by being brave (and getting a sweet treat afterwards). She felt that the story, called “Rosy Goes to the Doctor,” helped her prepare for future appointments. That is how I was inspired to write a children’s book to help my daughter and other children like her who struggle with the daily challenges of living with a food allergy.

The illustrations in the book are wonderful. Did you do the artwork also?

I love the illustrations! Bumblebee Books and Olympia Publishers provided me with an illustrator named M. Das. I felt that it was important that the illustrations were somewhat realistic and included imagery of a human child to whom children could truly relate, rather than a fictitious animal character. My daughter and I worked together to provide the illustrator with detailed descriptions of each character in the book and what we wanted to see on every page. It was really neat to see our words come to life in the drawings that came back to us.

As the parent of a child with food allergies, how much of the book was written from you or your daughter’s personal experiences?

All of it! Both my husband and I have an anxiety disorder that we have to manage, and we experience additional anxiety about our daughter’s food allergy. Our daughter has experienced terrible anxiety in anticipation of her allergy appointments, going to play dates and birthday parties, being different from her friends and schoolmates, and speaking up to friends as well as strangers about her allergy. It breaks my heart that she lives each day with this nagging fear about the lurking danger of her food allergy. Our approach has always been to educate and empower her to learn what she can do to keep herself safe. As a family, we have tried all of the “Ways to Help Your Child Manage Anxiety” included in the back of the book (except the proximity food challenge and happy visit), and we’ve practiced them for many years to learn what techniques help us the most.

 I love the birthday party situation in the book where Quinn has to speak up for herself. I felt butterflies for her! How did you teach your daughter about handling such a situation?

It started with reading a lot of children’s books about food allergies together and having an open dialogue with her. In fact, our first ever food allergy book was your book “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies”. We read books that encourage speaking up about your food allergy, like “The Peanut Pickle” by Jessica Jacobs, and “Food Allergies and Me: A Children’s Book” by Juniper Skinner. We read books that help you prepare for a social event and learn how to stay safe, like “The No Biggie Bunch” series by Dr. Michael Pistiner, and “Joey Panda and His Food Allergies Save the Day” by Drs. Amishi Murthy and Vivian Chou. We read other books about calming anxiety in children, like “Don’t Panic, Annika” by Juliet Clare Bell and “Sea Otter Cove: A Relaxation Story” by Lori Lite. We also encouraged our daughter to practice speaking to strangers about her allergy by having her place her order at restaurants and ask about their food allergy practices, and by participating whenever we trained friends, family, school staff, and caregivers on managing her food allergies (in fact, these were practices we learned from you and Morgan!).

 It took several years and many birthday parties before any of us felt reasonably calm about the experience. We still follow the same process of checking with the party planner ahead of time on what food will be served, reading all of the ingredient labels, staying away from foods without a label, and making sure we have two epinephrine auto-injectors with us. As my daughter has gotten older, it upsets her more to bring her own safe treat and eat something different from the other kids at the party. Sometimes we are able to work with the other parent or bakery to ensure the shared party treats are safe for my daughter to eat. But we continue to work on helping her accept being “different” from her peers. Maybe that will be my next book topic!

In the Notes to Parents in the back of the book, you mention teaching a child mindfulness. What’s the best way that you’ve found to have a child be willing to try this skill?

Number one is finding the right tools, and number two is setting an example by practicing mindfulness yourself in front of your child. I’ve included a number of mindfulness tools for kids in the back of the book, but two additional tools that we love are “The ABCs of Yoga for Kids” learning cards and “50 Mindfulness Activities for Kindness, Focus, and Calm” cards. We practice these cards together, often before bed. A great book to help teach your kids about mindful belly breathing is “Sea Otter Cove: A Relaxation Story” by Lori Lite. We sit and practice different breathing techniques together, starting when we are already calm. As a parent, I absolutely loved Dr. Kristen Race’s “Mindful Parenting” book along with all of her amazing techniques for busy parents and the entire family. My child has witnessed firsthand how I can maintain more peace and levelheadedness when I am disciplined with my daily meditation practice. When I am feeling particularly frustrated or stressed in front of my child, she sees me stop, pause, and take a breath, or blow out an elongated breath, or remove myself from a heated situation and find ways like reading, listening to music, or taking a bath to calm myself. She also sees me push myself to do something in spite of my fear, and I help her recognize all of the instances in which she has been brave despite her food allergies.

Is there anything else you’d like to tell us?

I truly hope that this book helps children and families with food allergies. It’s based on my own personal experience, research that I’ve done through books, conferences, webinars, and meeting with a child psychotherapist whose own child has food allergies. Before publication, it was vetted by that same psychotherapist as well as my child’s board certified asthma and allergy doctor.

Thank you.

Thank you Nicole!

College with Food Allergies, Interviews, Travel/Eating Out & Food Allergy

AllerTrain Allergy Training for Chefs

Betsy Craig and her husband, Rocky, started AllerTrain, an ANSI accredited food allergy and gluten-free training course offered by MenuTrinfo (which, according to their website is “dedicated to bettering the food-service industry by providing two major services: Certified Nutritionals and food allergy/ gluten-free identification and education”.) The course teaches foodservice professionals about the top foods causing food allergies, proper protocol for preparing food so to avoid cross-contact and to how better serve diners with special dietary needs. This will help restaurants avoid food allergy related incidents, and prepare them to handle such incidents, should they occur.

AllerTrain by MenuTrinfo (3)

Where did the idea of AllerTrain originate and how long have you been in business?

AllerTrain was born out of my original business MenuTrinfo (mash-up of the words menu – nutrition  – information).  Once we set up our company nutritional software for industry in 2010 my husband realized he could tag allergens in menu items for the restaurants we provide nutritional service for.  I knew that in order for it to help those with food allergies, and this new movement of gluten-free, that training needed to be in place to make a difference.  Having food allergy friendly food was only step one in keeping diners safe and meeting special dietary needs.

I reached out to others in the food safety, restaurant, food nutrition, and training space to begin to build a training program I called AllerTrain.  This was October 2010.

Can you explain AllerSTAR and MenuTrinfo?

AllerSTAR takes learning objectives taught in the AllerTrain educational programs and makes them singular training points taught through a monthly poster and toolkit program.  This is to enhance the learning in AllerTrain and also to keep the topics of food allergies, gluten free and proper standard operating procedures on top of mind.  This poster training program is for all employed at a restaurant or college who does the month AllerSTAR program. Teach, test and sign off on the learning object creates ownership with the industry and staff at any food location that takes part in AllerSTAR.

I’ve seen that you’re training many chefs in colleges who have Sodexo. What other groups are you training?

Sodexo was a clear, eager and super helpful early adopter partner for AllerTrain but we have many folks who have trained within AllerTrain courses.  Folks at almost all Ivy League schools, key brands like Eat’n Park in PA, Glory Days Grill in the New England area, a part division of Panera Bread in TN, WV and VA, Cattlemen’s Steakhouse in CA, universities and colleges throughout the US (in the FARE college training program and out).  College food service management companies like Parkhurst, Culinart, Aramark, and Chartwells.  Many different private schools, a number of public K-12 districts, hundreds of schools in Texas, Training centers throughout the country, Amtrak, over 300 health officials in Virginia, over 75 food service professionals that work within the federal prison system, Food service managers at airports in a number of major cities, the head of F&B for the Olympics, and the list goes on and on…..

Can you tell us what is involved with training a chef at a restaurant and the staff?

A combination of training of the disease of food allergies, Celiac and intolerances, best practices for front and back of house, policy and procedure assistance and emergency protocol.   Ongoing training is also a major key to keeping folks trained and confident.

Does your training cover cross contact?

Yes there is a great deal of focus on cross contact.  It is key to successful food prep, cooking, delivery and satisfaction.

Do you suggest that restaurants and dining halls use separately colored utensils in the preparation of meals for food allergy and/or gluten free customers?

We fully and completely promote this concept and encourage the use of separate colors for food allergies and Gluten-free.  We use the same color for both of these special dietary needs, as the method to keep people safe is the same.  That is also why we teach both in AllerTrain. The teaching and tools are the same and desperately needed for success.

Do you provide ongoing training for a site and their employees? Or is it just a one time training?

Ongoing training is addressed through the AllerSTAR program.  Also many locations and universities have their staff go through AllerTrain once a year despite the fact the certificate is good for 5 years.  They want to keep the information top of mind yearly.

Thank you so much Betsy for creating this wonderful program to keep those with food allergy safe when dining out or in college!

 

Food Allergy & Anaphylaxis, Food Allergy & Families, Interviews

Allergy Superheroes!

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Hello Dean & Eileen! I’m thrilled to be able to interview you today about your company, Allergy Superheroes. I love the empowerment that comes for kids with food allergies being superheroes. 

Eileen: Thanks Nicole! We love focusing on the positive too. There’s no better analogy for food allergies than kryptonite. If Superman can have a weakness and still save the day, then our kids can too!

Please tell us how your company came into being.

Dean: When our boys were diagnosed with food allergies, it wasn’t really a life-altering experience like it is for most new families since Eileen has a lifelong experience with it. But when they started school we became acutely aware that the rest of the world doesn’t really get it yet. When we realized the kryptonite analogy, we combined our love of superheroes with that positive message to help get the idea of food allergies across and spread awareness.

I especially loved the teal leaf bags you had available for Halloween. What are your highest selling products?

E: Our teal pumpkin products did really well this past October, especially the candy buckets. In general our slap brasingle-dose-benadryl-bottles-allergy-superheroes-food-allergy-2celets do really well (and we’re about to release them in more allergens) and everybody loves our single-dose liquid medicine bottles.

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Born out of my desire not to carry a full (not to mention heavy) bottle of liquid Benadryl with me all the time, those have really made my purse lighter and everybody else loves them too. But my personal favorite is our “I have a kid with a food allergy, you bet I’m a SUPERMOM” travel mug.

D: I sometimes wear the slap bracelets even though I don’t have any food allergies. It helps to spread awareness and they’re a lot of fun!

What food allergies do your two boys have? 

E: Our older son is allergic to egg and peanut, though he is finally starting to outgrow the egg and he’s been handling it in baked form for a little more than a year. Our younger son is just peanut. Both of them have a big question mark around some of the tree nuts though, because introducing those has been problematic because of my allergy to them.

How do they feel about being a part of your company?

E: They love it! Modeling usually requires bribery of chocolate to get everyone through it, but they love being part of this and they know it’s something special. We have overflowing file folders of the artwork each of them has drawn of our characters.

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D: Our boys are really into superheroes, so they love the idea behind the business and our characters. They wear their food allergy superhero shirts a lot and love helping to come up with new ideas on how to spread awareness. It really is a family venture!

Can you share a story of superpower one of them has enjoyed in life?

D: Our oldest is very active and outgoing. He has no issues with talking about his food allergies and spreading awareness about them. When a birthday party comes up, his friends know about his allergies so they make sure their parents talk to us so that their birthday treats will include him! He also loves to draw and we can see him doing a lot of the artwork side of the business when he gets older!

Eileen, you have had food allergies all your life. What was it like growing up in the 1980’s with food allergies? 

E: Different, very different. There are times that I look back and just shake my head. I actually wrote a blog post a few months ago about how my “food allergy mom” life is easier than my mother’s was, where I highlight a bunch of resources and improvements. This could really be the subject for a novella since so much has changed, but some major points:

It was harder to get diagnosed and get proper medication–I had an anaphylactic reaction to eggs at 12 months, but the only prescription I received upon leaving the ER was for Benadryl (it wasn’t OTC), and we weren’t sent to an allergist or even told to avoid eggs (my mom avoided them anyway.) I had some smaller reactions and then another anaphylactic one to nuts in the months before my 4th birthday, and then I was finally prescribed epinephrine, but I wasn’t tested for allergies until I was 6. (By then there was no trace of an egg allergy.) And that was the only testing I had done as a child.

Most people hadn’t heard of food allergies. I did a lot of explaining and so did my parents, but it was rare to encounter anyone who had previously heard of allergies or could accommodate them.

There weren’t very many of us. I was unique in my dietary struggles, though I don’t remember feeling down about it very often. I was in middle school before I finally met one other kid who had food allergies. (I think my mom secretly hoped we’d become best friends and look out for each other, but he and I never hit it off.)

Epinephrine was carried in single doses and was basically seen as a last resort. We weren’t told to use it unless things got really bad. The whole concept of always having two doses and using epi “first and fast” is actually a pretty new concept (and one I’ll confess that I struggled with. Benadryl got me through so much in my youth, so the thought of using epi preemptively and then sitting around bored in the ER for 4+ hours was something I did not get behind for a long time.)

We didn’t have the internet. As a result, news of food allergy deaths seldom reached our ears so our perception of the risk was less. That may have put us at greater risk, but probably also reduced our anxiety level. But on the other hand, we didn’t have many resources available to us, either. My mom used to receive a monthly newsletter from a now-defunct allergy and asthma organization, and most of the articles were on asthma. If she’d had access to the community we have today, I’m sure our lives would have been a lot different–certainly a lot less isolated.

D: Nowadays, awareness is growing, but there is so much more work to be done. It’s hard to fathom going through that with virtually no awareness or support at all. The kids and parents of that time period and earlier are real superheroes in my book!

How did you manage to stay safe in school, dating, eating out without the awareness that’s available today?

E: I’m going to start by saying that I was pretty lucky to “only” be allergic to tree nuts. If I’d been allergic to, say, dairy or wheat, or if egg had stayed with me, I’m sure things would’ve been a lot harder, because I would’ve encountered them a lot more. Tree nuts aren’t as widely used, so my life was not as restrictive as it could have been.

My mom considered it a victory to actually get my EpiPen into the nurse’s office, though she has repeatedly expressed doubt that anyone there would’ve known how and when to use it. We put a lot less emphasis on inclusion back then and mainly focused on “do what you need to do to stay safe.” The world isn’t nut free, and my mom wanted to make sure I understood that I couldn’t always participate in shared treats. When foods came into the classroom I would ask questions, and sometimes I would just do without. I don’t think I ever had a backup stash at school. I don’t think that even occurred to my parents.

I think I started self-carrying around 5th grade, which I’m pretty sure made my parents feel safer. I had a fanny pack that year, then somewhere along the line I just switched to carrying it in my backpack. I don’t have very distinct memories of any of that, it just sort of happened when it happened. I got a fairly good handle on what I shouldn’t eat by then, and I can’t recall any school-related reactions beyond early elementary school.

Telling boyfriends about my allergy was definitely a priority. We had a “no kiss” rule growing up if my parents ate something I was allergic to, so that transferred over to dating. Generally, I would tell guys that they shouldn’t eat nuts while we were out. I wasn’t forward enough to add “or you can’t kiss me,” at least not early on, but no one ever challenged my rule, either. I can’t say I put any thought into what they’d eaten previously–but then, the first supposed “peanut butter kiss of death” didn’t happen until I was in my 20s, so that was another danger that I simply wasn’t aware of, nor did I fall victim to it. But I didn’t date a whole lot, either.

(Dean here, she was worth not eating any tree-nuts before or during our dates for that goodnight kiss!)

Something else that is very different today is awareness of cross contamination. Some might argue that cross contamination doesn’t have much awareness, but when I was little there was none–and I mean none. We were never warned against it by our doctors, foods never labeled for it, and the general principle we lived by was “don’t eat anything with nuts actually in it.” We knew you couldn’t pick nuts out, but even the concept that you couldn’t use the same knife was something we learned (painfully) the hard way. There were a handful of reactions from my childhood that we traced to contamination as we struggled to figure out the concept, and some other “mystery” reactions that must have been from CC.

Kissing, cross contact–basically, these things had to happen a few times before doctors, patients, the news, and lawmakers figured out the pattern and started doing something about them.

So when it came to restaurants, we did a lot of educating. It wasn’t uncommon for me (or my parents) to explain what food allergies were to restaurant staff–and after we learned about shared knives and foods touching, we told them not to do that, either. Whether any of them actually took precautions in the back is debatable–but on the other had we were pioneers, laying the foundation policies that restaurants are adopting today. It’s a wonder that we ate out at all–but without the internet shoving food allergy deaths in our faces every few months, the danger of that happening also seemed farther away. At times we coasted through on ignorance and luck.

Is there anything else you’d like to share?

E: It’s been great getting to be part of this community since we started up a few years ago–it’s such a welcoming and positive space. I also blog at www.allergysuperheroesblog.com and I started that up because I wanted to share my perspective of dealing with two generations of food allergies–my outlook is different since I’ve been through it myself, but caring for your allergic child is definitely different than managing your own allergies, too. Most of the time we don’t see the after effects of the things we’ve done, but it’s really all about helping people. On the rare instance that we get feedback that we’ve helped someone, or given good advice, or made someone feel more confident about the future, that’s when we know that we’re doing the right thing. We love all of the connections we’ve made over the past few years!

D: It really is the most fantastic community to be a part of! We’ve met a lot of amazing people and we’re continually inspired by them. And when we get to meet them in person at conferences like FABlogCon, it truly is a SUPER experience.

Thanks so much!

Thank you Nicole, we’ve loved chatting with you!

Food Allergy & Families, Interviews, School & Food Allergies, Travel/Eating Out & Food Allergy

Disability Rights Attorney & Food Allergy Mom, Mary Vargas

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Hello Mary. It’s wonderful to interview you today. Can you please tell us how you became involved in disability law, especially as it relates to food allergies and anaphylaxis?

I’ve been a disability rights lawyer for almost two decades. I started my career at the National Association of the Deaf doing disability discrimination litigation. When my own child was diagnosed with food allergies and subsequently turned away from a summer camp because of his allergies, my worlds collided. I found myself in the uniquely familiar position of advocating for inclusion but this time I was advocating for my son. I realized that if the child of a disability rights lawyer was denied access because of food allergies, there was work to be done.

What food allergies does your family manage?

I have three boys and only my youngest has food allergies – peanuts, tree nuts and shellfish.

What lawsuit(s) have you litigated that pertain to food allergies and anaphylaxis?

Stein & Vargas, LLP has a special interest in pursuing litigation that will create safe and equal access for people with food allergies. We’ve litigated a number of cases throughout the United States on behalf of people with food allergies who have experienced discrimination whether it be in employment, education, or access to programs and services. Among the complaints we have pending now are a complaint against Young Shakespeare Players East in which the United States Department of Justice has concluded that Young Shakespeare Players East discriminated against my 11 year old client on the basis of his food allergies and retaliated against my 13 year old client for advocating for her friend’s rights. We are also co-counseling on a case with Laurel Francoeur against Panera on behalf of a child who had an anaphylactic reaction after being served a grilled cheese sandwich that contained peanut butter despite notice that the sandwich was for a child with a peanut allergy.

From your experience as an attorney, is there anything that a food allergy family should be aware of or take action on to ensure the safety and inclusion of their child in school? 

The most important aspect of safety and inclusion at school for food allergic kids is the development of a strong and positive relationship between the school and the parents. The focus cannot be on highlighting where plans failed, but on building long term trust and commitment. Even the most knowledgeable and well-meaning schools will fall down sometimes.

You are a Co-Founder of  Allergy Law Project. How did that come into being?

Allergy Law Project was the brainchild of Laurel Francoeur who approached Homa Woodrum and I two years ago about the need for reliable legal information in the food allergy community. There is incredible power when parents of food allergic kids put their brains together for the good of the community.

I love the blog post called “A Seat at the Table – Bringing Allergy Friendly Food to Restaurants“. You said that’s the question you are asked the most. What can a family do, in the moment, if a restaurant forbids them to bring in outside food? Is it necessary to bring along the state law to reference or is there some other statement that can be used to allow outside food?

Generally, families can ask calmly and respectfully to speak with the manager. Explain to the manager that your party is looking forward to enjoying the food that the restaurant offers but your child cannot safely eat the food. If after calmly talking this through and explaining why it is necessary for your child to bring safe food in order for the rest of the dining part to eat at the restaurant the manager still refuses, you may need to go higher up the chain. You might send a politely worded letter to the restaurant owner to educate them about food allergies.

Many food allergy families are concerned about Donald Trump’s comments about “streamlining” the Department of Education and curbing the role of the Office of Civil Rights. What can food allergy families do to protect their child and do you think that is likely to occur?

I have grave concerns about the impact of the incoming administration on many aspects of the work we do. The Office of Civil Rights within the Department of Education, the Office of Civil Rights within the Department of Health and Human Services, and the Disability Rights Section all have a critical role in ensuring compliance with our federal rights. Significant cuts in staffing could jeopardize the ability of these agencies to safeguard rights and changes in philosophy could undermine enforcement actions throughout the United States. There is so much at risk and already resources are stretched tightly. I’m also concerned about the potential rollback of food safety regulations that has been threatened. My hope is that the allergy community has the potential to speak loudly and in concert to defend important rights.

If someone reading this feels they need legal advice pertaining to a disability law question, how can they contact you? Stein & Vargas, LLP’s website is www.steinvargas.com. Folks are welcome to contact me with questions through the website.

Thank you very much Mary!

Ms. Vargas is committed to ensuring full and equal access for all individuals. She has litigated cases pursuant to the Americans with Disabilities Act and the Rehabilitation Act throughout the United States in federal and state courts.

Ms. Vargas also represents women who are denied access to reproductive care and coverage. She has successfully obtained full coverage of late term abortion claims through insurance appeals. She also speaks nationally on issues including women in law, movement building, discrimination, pain, food allergies and anaphylaxis, and reproductive rights. Ms. Vargas is a co-founder of and blogger for the Allergy Law Project.

Prior to joining Stein & Vargas, LLP, Ms. Vargas was a staff attorney with the National Association of the Deaf.  Ms. Vargas was a 1998 Skadden Fellow and a 1994 Truman Scholar. Ms. Vargas was the 2010 recipient of the Advocacy for People with Pain Award from the American Academy of Pain Management. She wrote for the American Bar Association, Mental and Physical Disability Law Reporter.

Ms. Vargas obtained a B.S. in deaf education from the College of New Jersey, and a J.D. from the University of Connecticut, School of Law. While in law school, she was appointed to the Client Advocacy Board and served as student director of the Yale Law School, Advocacy for Persons with Disabilities Clinic.

Ms. Vargas is a member of the bars in Connecticut and Maryland.  She associates with local counsel around the country in bringing cases of special importance to individuals with disabilities.

Interviews

Kyle Dine – Food Allergy Performer Extraordinaire

Kyle Dine is a food allergy educator and musician. He has performed allergy awareness assemblies at over 300 schools across North America and has two CDs of music for children with food allergies. Learn more at www.kyledine.com

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Hello Kyle. Thanks for your willingness to be interviewed by AllergicChild.com! Can you tell us what food allergies you manage and have you ever experienced anaphylaxis?

I am allergic to peanuts, tree nuts, eggs, fish, shellfish and mustard. I have unfortunately had many allergic reactions, however one stands out as the most serious anaphylactic reaction. I was 21 years old and was given a snack by someone I knew who told me it was okay. My instincts told me that the treat (a brownie) was a weird thing to be safe for me, however I ate it assuming it was made safe for me. It contained cashews and turned out to be an unfortunate accident due to a breakdown in communication. I learned a very valuable lesson that day in that you can never be too careful. I triple check anything I am unsure about, even food from friends or loved ones. It was a wake up call to say the least.

How old were you when you were diagnosed?

I have had allergies nearly all of my life starting at the age of two. I was initially allergic to dairy foods and outgrew it. I grew into my mustard allergy as a teenager strengthening my bond with ketchup!

How did you learn to advocate for yourself growing up?

I will admit that I had a difficult time advocating for myself. I was a very shy kid and allergies were not so prevalent at that time. I did not know anyone else that had an allergy. This often made me feel like I was a burden to others as I wasn’t so “simple” around mealtime as everyone else. I would ALWAYS carry my EpiPen with me and wore a MedicAlert bracelet. As I got older, my parents started getting my friends more involved, which really helped. They all knew how to use my EpiPen, and really supported me. It’s so much easier to ask about ingredients at restaurants and advocate for yourself when you know your friends have your back and know how serious an allergic reaction could be.

I’ve seen your posts about being on tour. Tell us about your Anaphyl-What? tour!

I firmly believe that ALL children should be educated about allergies at a young age. This helps them understand what they are all about and builds empathy towards those who have allergies. My current “Anaphyl-WHAT? Tour” will reach tens of thousands of kids at 45 schools in only two months. My assemblies raise allergy awareness in a fun way. My shows feature lots of songs, trivia, game shows, and my puppets EpiMan, EpiMan Jr. and Chef Allérgy. Kids learn a ton in 45 minutes and will transform how they view allergies. My latest tour really emphasizes the word “anaphylaxis” to let kids know how serious allergies can be, without making it scary. I am posting about my experiences while on tour on my Facebook page.

You’ve traveled to China. How did you manage that trip with your food allergies?

That is a full article in itself! I documented all of my preparations on my blog at http://foodallergiesrock.com/category/allergies-in-china/. In a nutshell, the trip was challenging. However, I love travelling and refuse to let my food allergies ever get in the way of that passion. My wife and I brought a full suitcase of safe food with us and bought an electric hot plate when we arrived. We cooked rice, pasta, chili and other dishes on the floor of our small hotel room. We ate out once and found a pizza place where they spoke English, but still used an Allergy Translation Card. I am not a foodie and don’t even care that I missed out on China’s food culture. I got to understand their culture on other levels through museums, temples, wandering the streets and practicing a few very basic Chinese phrases with locals. It was a trip of a lifetime!

Your wife has celiac disease. How do you each stay safe while cooking in the same kitchen?!

When we first started dating we thought it was so cool that we both had such dietary restrictions! We’ve had each other’s back for a long time now and do everything we can to keep each other safe. We are clean freaks with our kitchen! I eat wheat still (to help cut down on gluten-free grocery costs), but have a separate toaster and cutting board. She eats eggs, but uses a separate frying pan. She loves nutella, but only eats it when I’m gone on tour.

What advice/experience can you offer a child who’s tired of being different and doesn’t want food allergies anymore?

I had the same talk with my young cousin who was diagnosed with tree nut allergy a few years ago. I understand that it’s a downer to not be able to eat delicious looking foods, or be excluded because of an allergy. However, I really play up the fact that this one thing makes you so special and unique. Empowering a child over their allergies involves showing empathy when they are down, but also involves cheering for their successes. I tell children with allergies how proud I am of them for wearing their auto-injector and how cool their MedicAlert bracelet looks. I ask them how they stay safe in difficult situations and applaud their efforts. In essence, I try to make a child feel like they are part of something bigger. Although it’s isolating at times, kids with food allergies are part of a club of amazing children who are actively helping to take care of their own health at such a young age. That’s something to be proud of.

Do you have anything else you’d like to add?

Just as one tour ends, another one will begin this spring! I will be visiting many states across the U.S. throughout March, April and May. Please feel free to visit my website for more information and get in touch! I would love to help make a more allergy aware environment at your school!

Interviews

Sweet Debbie – from Accountant to Allergy-Free Baker!

Debbie Adler

 

Thank you Debbie for being willing to be interviewed by AllergicChild!

My honor and pleasure!

Your son has multiple food allergies. What allergies are you managing?

My 5-year-old son has life-threatening, anaphylactic allergies to dairy, eggs, peanuts, tree nuts, flax seeds, sesame seeds and shellfish.

It’s a big leap to go from being an accountant to a baker. Tell us about that transition.

The transition from accountant to baker took an alphabet’s worth of career moves from accountant to b-movie actress to comedienne to director of development to editor of a teen magazine all the way through zen yoga instructor. I won’t bore you with each job I had in between.

Then I started at a again to become an allergy-free baker when my son was diagnosed with allergies to almost everything in the USDA food pyramid. When I got involved with the food-allergic community, I realized there were millions of children in the United States alone that had these severe food allergies. I wanted to bake for them as well since I had already figured it all out for my son.

I see that you use unusual ingredients like Acai Berries and Coconut Nectar. Have you found that kids with food allergies have any trouble with these ingredients?

There is a misconception out there that a coconut is a tree nut because it grows on a tree and ends in n-u-t. But in fact, coconut is a drupe, or a one-seeded fruit. Therefore, if you have a tree nut allergy you can still eat coconut and all its derivations, including coconut nectar. Now, if you have a coconut allergy, and I know some people do, that is a totally separate issue. Acai berries are just like blueberries, but they come from Brazil. So if you’re not allergic to berries you should have no problem with acai berries.

Tell us more about your book “Sweet Debbie’s Organic Treats: Allergy-Free and Vegan Recipes from the Famous Los Angeles Bakery “

Hi res Book Cover_Debbie Adler

My cookbook contains all the recipes that I developed for my bakery, that took me years to develop, including those for cupcakes, cookies, brownies, muffins, energy bars, donut holes and breads. All of these are not only allergy-free, but also gluten-free and sugar-free as well.  I developed them with the goal of making them highly nutritious as well. So there is a lot of information about the alimental values of all the ingredients and each recipe contains information about calories, carbs, sugars, etc. per serving. There’s a lot of humor in it as well. Remember, I was a comedienne when I was up to the c’s in my career choices.

You’ve been on tour recently. Do you attract more interest from the gluten-free, autism or food allergy community?

It seems there is usually a mix of people, most of whom have none of the above issues, believe it or not. They just want to learn how to bake healthfully. But, of course, there is an epidemic of people who need gluten-free items lately so I would say after the general population, gluten-free audiences are my biggest and then the food-allergic.

What are your hopes for your bakery?

I hope my bakery continues to thrive and make delectable and safe treats for everyone who wants a baked good, no matter what his or her allergy or intolerance.

Is there anything else you’d like to tell us?

My customers all know that they are not sacrificing taste or pleasure when eating Sweet Debbie’s treats, but sometimes I find there is a prejudice when people hear that everything is dairy-free, egg-free, nut-free, gluten-free, soy-free and sugar-free. They think it can’t possibly taste good. I’d like to dispel that myth because it is not only possible, it’s imperative, otherwise I wouldn’t be in business.

Interviews

AllergicChild & Allergy-Friendly Cook, Cybele Pascal

CYBELE PASCAL is the author of two bestselling cookbooks, The Allergen-Free Baker’s Handbook and The Whole Foods Allergy Cookbook, and the forthcoming Allergy-Free and Easy Cooking (12/4/12). She has appeared on The Martha Stewart Show, the Food Network, the Today show, Good Morning America Health, PBS, and NPR. She is a leading blogger in the field with an award-winning website, and lectures and teaches nationally. Pascal serves as a Celebrity Ambassador Who Cares for FAAN (Food Allergy and Anaphylaxis Network) and is the founder and president of Cybele’s Free-to-Eat, a line of gluten-free foods that are free of the top eight allergens. For more information, visit www.cybelepascal.com

Cybele, what food allergies do you manage for your son?
Both my sons are allergic to shellfish.  My son Lennon also has a tree nut allergy and is allergic to kiwi. Lennon used to be severely allergic to dairy and soy, but outgrew those allergies by the age of 6, thankfully. Monte also used to be allergic to eggs, which he outgrew by one. He also suffers from allergic asthma, and when it flairs, he has to avoid dairy. It should be noted that I also have food allergies.

Did you wake up one morning and say, “I’m going to become a top 8 allergen-free cook!” or has it been a gradual process?
I never planned to be a cookbook author. In hindsight it all makes sense that I’ve ended up here, because I’d actually done a lot to prepare myself for this career, but it wasn’t conscious or planned. I was a professional writer, who’d cooked in restaurants for a living, but I never dreamed of being a culinary professional. It was a survival job, that I also happened to enjoy. I only started writing allergy-friendly recipes out of necessity. and it all came together. It’s been a very serendipitous process. Lennon was diagnosed with multiple food allergies in 2002, I wrote my first cookbook to literally answer our need for top-8-free recipes to keep him nourished and safe, and in the process I discovered how many others out there needed allergen-free recipes. Once I published my first cookbook, the Whole Foods Allergy Cookbook, I realized how extensive the need was, people started asking me for more recipes, to write columns, more books, and I realized I needed to commit myself to helping as many people as possible by providing safe and delicious food for those on restricted diets.

 

Tell us about your new book coming out in December, Allergy-Free and Easy Cooking: 30-Minute Meals without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree Nuts, Fish, Shellfish, and Sesame
I’m extremely excited about my new book, because it’s a collection of 75 30-minute meals!  “Make it safe, make simple, make it fast” is my new motto! and most of all, make it delicious. I am too busy to spend hours in the kitchen, and I think most of you are too.  so I decided to write a collection of the recipes I wished I had, allergy-free and easy. This book was so fun to write, in part because it saved me so much time making dinner!

What kitchen equipment is a must-have for a family managing food allergies?
Plastic cutting boards that can be washed at high temps in the dishwasher to sanitize them; stainless steel cookware that is non-porous and therefore won’t hold onto traces of food proteins. Depending on the severity of the food allergy within your household, you may need a separate set of cookware, serving utensils, etc so you can avoid cross contact by simply having a designated “safe” set. In terms of items that will simplify your life just to make cooking easier, I highly recommend the Vidalia chop wizard, which is prominently featured in my new cookbook. I have a whole section devoted to recommended kitchen items, so please check it out!

Rumor has it that you are baking cookies that can be purchased in some Kroger stores? Tell us about this wonderful news!
This has been a labor of love that is finally coming to fruition. I’ve been working on launching a line of allergy-friendly foods called Cybele’s free-to-eat for a little over a year. I am starting out with three reader favorites from the Allergen-Free Baker’s Handbook – my three most popular cookies, chocolate chip, oatmeal raisin (gluten-free) and chocolate chunk brownie cookies. They are baked in a dedicated gluten-free allergy-friendly facility, are certified gluten-free, kosher, and vegan, and free of the top 8 allergens. Yes, you have heard right, I’m thrilled to have been picked up by Kroger, and to start out we’ll be available in Ralph’s in Southern CA, Kroger, and King Soopers.

Which food(s) that you make are your sons’ favorites?
They love shepherd’s pie, chicken nuggets, chicken tenders, hot wings with ranch dressing, chicken fried rice, (obviously they love chicken, right?) gnocchi, and Lennon’s favorite recipe in the new book is the chili mac, which I chose to put on the cover.

When I’ve tried baking gluten-free, I make hockey pucks instead of bread! What tips can you give to those of us who don’t have your chef touch?
I think the key is your flour mix. I’m a huge fan of making a flour mix with superfine brown rice flour as the base, at least for more delicate baked goods like cookies and cakes.  Authentic Foods Superfine Brown Rice Flour is really the cream of the crop. For bread, I think the key is using rapid rise yeast. You don’t need conventional yeast with gluten-free bread, because you don’t have any gluten to coax in the multiple rises. One rise with gluten free bread is enough, and rapid rise yeast will do that.

Thank you Cybele! 

Interviews, Travel/Eating Out & Food Allergy

Traveling to Europe with Food Allergies

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Since our family has never been to Europe, I wanted to interview someone in the food allergy world who has and had a great experience! Julie Trone is the CEO of Allergy Free Table, LLC. She has two pocket guide style books on food allergy management. Together with her husband, John, they have created many new resources for families and teachers who manage food allergies. She loves to travel with her husband and twin boys; (one of her boys has multiple food allergies and both have asthma), ski, hike and practice yoga.

What food allergies do you manage in your twin sons and what is their age?

We currently manage peanut, tree nut, dairy, sesame, and sunflower.  Only one of our sons has food allergies. . The boys are 10 years old, soon to be 11.

How did Allergy Free Table come into existence?

About five years ago a neighbor had a 9 month old daughter who was diagnosed with severe multiple food allergies.   After advising her on food allergy management she asked if I would write a book with her on the subject.  I was very interested and came up with the concept of a pocket guide that was a quick reference guide for parents.  Eventually the torch was passed to me to take over the project.    This project led me to developing the pocket guide for educators with another friend, Maria Acebal.  Allergy Free Table is the result of these publications coming to fruition and recognizing the need for practical educational resources on this subject.

You recently went with your family to Europe and England.  What airline did you choose to take and why?

We chose Iceland Air for a few reasons. We all wanted to set foot in Iceland because it is a fascinating island with a unique culture. Iceland Air had the dates, airport locations, and price range we desired as well. We discussed our food allergy needs with a customer service representative upon booking who notated our record but it was not the reason we chose the airline. Even with the notation in place we were unsure how they would actually handle food allergy management until we were seated on the aircraft. We prepared for our flight by packing in our carry-on bag multiple packs of EpiPens and plenty of antihistamine. Our son packed his backpack with sandwiches and snacks to last the entire 10 hours of travel time. Neither the check-in nor boarding gate attendants were aware of the allergy notation and asked us to talk with the flight crew. I was concerned until the gate attendant flagged down the flight crew before they boarded. The flight crew had known about the notation then discussed their food allergy management protocol with us. They made sure they knew who Gavin was, where he was sitting, and that he was not in an aisle seat in order to avoid the possibility of cross contact. After the safety announcement, a food allergy announcement was made in three languages asking passengers to refrain from eating any nut products. They did not allow the sale of their trail mix snack and checked on him periodically. On our return flight I overheard a passenger order the trail mix and the attendant told him that it could not be purchased due to a passenger with nut allergies on board.

Can you tell us about managing food allergies in the various countries?  Were some countries easier than others?

We toured Italy, France, and England. Food is such an important part of the culture in each of these countries and varies by region. The food that is native to the region is generally served more often in restaurants and abundant in grocery stores.  For example; Fontina cheese is made in the Italian Alps where it can be purchased in most markets, cheese shops, and restaurants.
Prior to our trip we researched the location of grocery chain stores, hospitals, and pharmacies.   On our first night we stayed in Dijon, France and knew there was a large grocer in town, ‘Carrefours’.   Since we were traveling by car and had GPS we were able to find the store to shop.  Travelers who use public transportation may want to research what means of public transport will take them to the grocer.  Travelers will find small local markets with fresh produce, eggs, bread, and meat within walking distance in cities and small towns.   The local markets may or may not have GF foods like pasta and bread but carry fresh, local foods and limited packaged food.  Dairy products are very common in Great Britain, France, and Italy however we found safe breads, pastas, meats, and fish for our son.

France was the most difficult country in terms of finding allergen safe restaurants and packaged foods.  When we would find a safe product we would stock up.  Since we had a car it was not too difficult.  In Paris we did not have a car so our son ate a lot of safe cereal and slices of ham during our stay there.

In England packaged foods have the most informative labels I have ever seen.  It was quite refreshing.  Still, we followed our set rule; if you cannot read it don’t eat it (pertaining to food packaging labels).  Being in an English speaking country was  easier however we maintained the same protocol…read the labels each and every time, ask questions, and if uncomfortable trying a food say ‘no thank you’.

Did you go out to eat often?  What did you find to be difficult to manage?

We ate out two to three times a week for dinner and lunch.    When we would ‘shop’ for a safe restaurant we would take the language barrier and ability to understand our needs into account.  We rejected quite a few restaurants and frequented those that were safe.  Eating out was not very difficult as long as we were carrying safe snacks and at least two sandwiches for our son to eat just in case.  He usually ate all of the safe foods we packed and found something safe to eat (like the ham in France) at a restaurant.  Last resort for travelers is to go to an American chain like Burger King or McDonalds; we successfully avoided these restaurants.

Where did you stay – a hotel or a condo with a kitchen?

Mostly we stayed in week-long rental units with kitchens.  The day we arrived at any new location we would unpack then head to the grocery store to stock up on safe foods. In France we stayed in hotels; it was challenging.  London was a great place to stay with many grocers nearby including ‘Whole Foods’ in the Kensington area.

What can you suggest to our readers who want to take their child overseas?  Is there an age of child(ren) you believe works better?

We discovered that the most important task to managing food allergies in countries where the primary language is not English is to prepare in advance.  Order chef cards and emergency care cards in foreign languages; we purchased French and Italian cards.  I brushed up on my foreign language skills and was considered the family translator.   We also made a list of many words translated in French and Italian so we could read labels.  Other important words to translate are; medical assistance needed, where is the pharmacy, call a doctor, this is an emergency, and take me to the hospital.  It is important to learn about medical services available, proximity of the nearest hospital, and program the local emergency number (like our 9-1-1) into your cell phone.   Carry emergency medication with you always.  Even English speaking countries have a different dialect, vocabulary, and emergency number.

Packing is also a key factor.  We packed 2 jars of chocolate soy butter to last the trip and luckily it did.  I highly recommend packing the following;  plastic container, a few zip lock plastic bags, one cloth grocery bag, plastic cutlery, and a few staple foods.

It is important to educate your child before the trip about food choices, what will not be available, and what to expect.   We taught our sons that we were all going to find ‘different’ foods, some similar foods, and mostly to be prepared to try new safe foods.  They knew some sacrifices were necessary.  For instance our son never found a safe dessert, not even popsicles, so when we found Skittles he was allowed to have them.  After 7 weeks he was tired of Skittles but had a great story to tell about how many Skittles he was allowed to have.

I believe parents can bring their children to Europe at any age however the management will be different and possibly more demanding for smaller children.  Our 10 year old sons were great travelers.   Their maturity level was perfect for our long vacation abroad (50 days).  We are proud of our son with food allergies who was very interested in learning how to read a label in French and Italian as well as participate in ordering safe foods, asking questions, and being careful about choices.  He never complained about his food choices so I guess we did a good job preparing him and he was comfortable being flexible. We always had at least two sandwiches with us each day.  Every child is unique so it is not safe to assume your child is a natural traveler, especially children with medical needs.  Preparation is key!

Is there anything else you’d like to share with us?

Focus on the fun, art, history, sport, cultural attributes …anything but food.  It worked beautifully for us.  If someone has more questions have them contact me, [email protected] .

 

Interviews

Interview with Susan Weissman, Author of Feeding Eden & her son, Eden

Susan Weissman is the author of Feeding Eden: The Trials and Triumphs of a Food Allergy Family, a mother’s story of her son’s childhood food allergies and the life of her family.  Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post and Psychology Today, has contributed to Parent & Child, Allergic Living, and various sites on the topic of allergies and parenting. She was a PBS Parent Expert. Susan holds an M.Ed and is committed to strengthening the relationship between teachers and parents, and providing information to expand awareness around an issue that affects so many of us. Her son, Eden, is now almost 10 years old.

Susan, what made you decide to write Feeding Eden: The Trials and Triumphs of a Food Allergy Family?
Like so many other food allergy parents, I felt that with all we had gone through, there had to be a way to make some sense out of what was happening, and maybe help others.  After I started, and I began to achieve some rhythm with the project, I raised my sights a bit.  I decided I wanted food allergies families to know that they were not alone. And I wanted families, teachers, grandparents, even doctors and nurses, to understand what the food allergy life feels like for us.

What I wasn’t quite prepared for after Feeding Eden was published was that so many parents would reach out to tell me that they felt like they were reading the story of their allergic family and their parenting experiences.

For parents reading this interview, what hope or suggestions can you give those newly diagnosed or still struggling to get an accurate diagnosis?
I’d say that parents should have hope and optimism as they help their children navigate their allergic condition but they must have the right doctor and accurate diagnosis. The first step: make sure parents and their doctors are communicating clearly about tests results and what I call “food history.” This is the key to defining an allergic child’s medical needs. In the first chapter of my book, titled Searching For a Savior, I describe how I bounced between specialists like a ping-pong ball, waiting for one of them to “save” Eden from his symptoms. The problem was that I needed to find an allergist whose treatment I could both understand and implement.

You mention in your book attending a support group meeting. Do you still participate in one? What value do you find for parents managing food allergies in attending support groups?
I do still participate because there is always something to learn and share. The great thing about a food allergy support group is that even if you don’t feel like sharing your personal concerns or questions (for example – how your mother-in-law just “doesn’t get it” or how hard it is to convince your teenager to wear their medical ID bracelet) simply listening to the other parents’ stories helps everyone. Time and again, I’ve been in an unfamiliar situation with Eden, and I’ll think back to other parents’ suggestions. It’s a great way to learn about resources in your community, vent frustrations in a safe environment and learn about the latest food allergy research and treatment progress. And it’s a way to “give back” even to people who don’t read the book.

Do you have plans for an additional book?

Right now, my focus is on bringing Feeding Eden into schools and family communities all around the country.

Do you have a blog (or somewhere else on the Internet that you write?)
Yes. I write at www.susanweissman.com On my site, I have a blog where I post on topics of interest to all parents, including allergy friendly recipes and food ideas. I also contribute to The Huffington Post, Psychology Today and a site called Asthma Allergies Children, among others.


Eden, thank you for being willing to answer some questions for our readers.
Are you old enough now to carry your EpiPen at school? What about on the weekends or when you and your family go out – who carries your EpiPen?
No, I don’t carry my EpiPen at school. I have two emergency kits, one is with the teachers and the other one is with the nurse. On the weekends my parents carry it. Or whoever I’m with.

I have a lot of readers who have preschool age children with food allergies. What can you suggest for these kids with food allergies when someone offers them food to eat?
I don’t think I’ve been offered food I’m allergic to at school, even pre-school, really since everybody knows I’m allergic before the school year starts. Once in a after school class a PE teacher told everyone they could have a cookie that I knew wasn’t safe so I just didn’t take one. But if they can maybe they should say, “I have food allergies. Do you know what is in the food?” That’s what I say to anyone who offers me food and I’m not sure. Then I read the label too.

Eden, when you go out Trick-or-Treating for Halloween, how do you manage your food allergies?

I go out Trick-Or-Treating I try to take safe stuff, but there usually isn’t a lot.

Does your family have any “rules” about the candy that’s brought into your home later?

If something isn’t safe in my bag I give it to my sister and my dad. I don’t really care about the candy. It’s gets annoying that I don’t have as much to eat but I just like the fun of trick or treating.

Do you know what you’re going to dress up as this Halloween?

A Dark Sorcerer

Thank you Susan and Eden!

 

 

 

Interviews, Travel/Eating Out & Food Allergy

Interview with Disney Star, Kenton Duty, about Managing Food Allergies

Born and raised in Plano, Texas, Kenton discovered his love for acting in the fourth grade when he landed supporting roles in the Dallas Theater Center’s rendition of A Christmas Carole.  It was such an amazing experience for Kenton! He loved being on stage and got great joy from entertaining the audience.  The show did thirty-five performances between Thanksgiving and Christmas Eve, and Kenton relished every single one.  He followed that with a lead role in the production of Ragtime.  The production was seen through the eyes of his character!  The following year, Kenton was asked by his agent in Los Angeles to give California a try.

Kenton Duty can currently be seen as one of the stars on Disney Channel’s hit series “Shake It Up” as the hilarious character of “Gunther.”  Most recently, Kenton wrapped production in a lead role in the indie film Contest (2013). The movie is a story about standing up to bullying.  Kenton is also writing and recording a song for the movie.

Kenton, thank you for ‘speaking’ with me at AllergicChild.com. Can you please tell us how old you are and what food allergies you manage?

I am 17 years old.  I have a chocolate allergy and a wheat allergy.  I outgrew my dairy allergy when I was younger.

Have you ever experienced anaphylaxis or been to the ER with an allergic reaction?

I have never been to the ER or experienced anaphylaxis due to my food allergies.  I have had to go to the doctor several times.

Do you carry an EpiPen? How do you carry it?

I carry an EpiPen with me at all times.  I carry it in my backpack.  It is extremely important to have it with you at all times.  You do not know when you might need it.  I really like to think that it is just another item I carry around like my phone, iPad, sunglasses, etc!

With all your traveling, how do you manage your food allergies to stay safe?

I do several things to make eating a safe, but enjoyable time.  I pack or ship my food to the various locations.  I also bring my food on airplanes.  At some restaurants, it is easy to ask them to prepare my sandwich on the bread I brought in versus their bread.  I definitely explain to restaurants what my allergies are.

What is done for you at Disney and on movie sets to keep you safe?

I have explained to Eric (our on set caterer) what my allergies are, and he is amazing!  He is so thoughtful and encouraging.  He ensures I have healthy food choices to eat every day.  I also supply him with bread and bagels that are gluten free, so he does not have to worry about that.   The producers on the show and movie sets are very supportive too.  It is nice they accommodate my diet.  On the movie set I am currently working on, there has not been one meal where I have not had an option for food!  THANKS guys!!  (I am also a pescatarian, so I do not eat meat other than fish.)

I saw in a recent FAAN newsletter that you went to Capitol Hill to encourage the US Congress to support the School Access to Emergency Epinephrine Act. Can you tell us about this? What was the best part of this experience?

Oh my goodness!  It was amazing.  To be there with FAAN was so much of an honor.  I enjoyed every second of the day having the opportunity to speak with congressmen and senators about how important it is to pass this legislation.  I believe in the Act 200%, and I wanted to convey my thoughts as someone who carries an epinephrine auto injector, is a student in school, and can relate to the situations where an auto injector may not be available at the critical time in which it is needed.  The individuals we were able to meet with were very nice, and I walked away hoping they were a little more enlightened by our meetings.

Do you have any advice for younger kids who manage food allergies?

I know that you can possibly be bullied or made fun of because of your allergies.  I have definitely experienced those things.  I like to encourage kids to not feel weird or different because you have allergies.  It is hard, but if someone is not being nice or bullying you, let your parents or teachers know.  You do not want to let it get out of hand.  One of the lessons we are hoping kids learn in the movie I am currently filming, “Contest”, is that they can stand up to bullies.

I also encourage kids to not eat anything their parents have not let them know is safe.  Whoever cooked the item may have used different ingredients than what you are used to having in the product.  So, always check with your parents!

I definitely want to encourage kids to carry their epinephrine auto injectors with them.  It is just another thing to have in your backpack!  And, it will save your live.

Anything else you’d like to add?

I appreciate you asking me to share in your newsletter.  Your newsletter is very informative and educational.  The more aware of food allergies we can make society, the more safe it will be for those of us living with food allergies!!

Thanks Kenton!

 
 Kenton & Morgan at the 2011 FAAN Teen Summit

Interviews

Managing Food Allergy Bullies – An Interview with Kristen Kauke, Social Worker

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Kristen Kauke is a Licensed Clinical Social Worker who practices in IL.  She was diagnosed with food allergies as an adult and is the mother of two sons with anaphylaxis to peanuts, egg, milk and soy.  She is a regular presenter at Food Allergy & Anaphylaxis Network conferences across the country, and helps individuals cope with anxiety due to severe food allergies.

Kristen, there is such an emotional piece to food allergies. What situations of bullying do you hear children with food allergies share with you?

First, I think it’s important to differentiate between teasing, or “busting chops,” and bullying.  Teasing/busting chops happens frequently, especially among boys.  This is the condescending verbal banter that is a common way boys socialize, even among friends.  Examples might include sarcastic comments such as , “Your food looks sweet.”  Or put downs like “Why can’t you eat anything normal?  It’s like you’re allergic to everything!”  While these types of comments can sting, they aren’t necessarily bullying.

Bullying is the repetition of negative actions on the part of one or more persons against another who has difficulty defending themselves.  Bullying may be perpetrated in the following forms:  physical, verbal, social exclusion, false rumors, threats, or cyberbullying (texting, social media).  When it comes to food allergies, research tells us that most bullying episodes are in the form of verbal taunting.  This might sound like, “I wish you would die.  If I had a peanut right now, I’d throw it at you.”  Physical examples of bullying related to food allergies have included waving, throwing, or touching the victim or their “safe food” with the food allergen.

What can you offer to parents who find out their child has been bullied about food allergies?

First and foremost, parents can LISTEN to their child when they report bullying.  Thank them for sharing and acknowledge the difficulty of sharing such an emotional situation.  Second, acknowledge their feelings and experience.  This might sound like, “I imagine that felt terrible.  I can see how you would feel angry and sad.”  Finally, advise your child to react in the moment vs. later.

As a parent, we want to help our children become stronger and stand up to the bully. What is the best thing and the worst thing for parents to do?

The best thing parents can do to teach their child to react in the moment of verbal bullying is to teach and role play assertive language.  One simple, yet powerful framework is the “I message.”  I feel ____ because ____ and I need.  For example, “I feel mad and unsafe when you wave around peanuts and I need to you take my allergy seriously.”  Take turns acting out potential situations so your child gains comfort and understanding of speaking assertively in appropriate situations.

When it comes to physical bullying, the best thing parents can do is help their child report physical instances of bullying to the adult in charge, such as the school principal.  Parents are wise to keep records of incidents reported and outcome (or lack thereof).  Parents could welcome the idea of change of classroom when applicable.  They can also use the situation to help their child keep perspective on the powerful impact of our words and actions on others (i.e. siblings).  Finally, parents can keep in mind that children can be resilient even in painful situations.  When children learn to seek and accept help, they gain personal power.

Parents want to avoid addressing the parent of the offending child directly, or advising their child to try to make friends with the bully.  “Winning over” the other almost never works.

How about the child – what’s the best thing for he/she to do in the middle of being bullied? And afterward?

When it comes to teasing or “busting chops,”  a child can “tease the tease.”  For example, in response to the previous tease of “Why can’t you eat anything normal?  It’s like you’re allergic to everything,” a child might respond, “I know, right?!  Grrr food allergies.”

When it comes to verbal bullying however, a child should consider the following:  keep a low profile;  avoid the bully;  buddy up, especially in places that are less supervised such as the playground as bullies tend to prey on victims when they are alone and unprotected;  and hang with positive people – find places to belong.  When bullied, it is important for the child to NOT provoke the bully in the following ways:  tease the tease, make fun of the bully, or tattle on the bully for minor offenses, as these might just make the bully more aggressive and seek retaliation.

Regarding physical bullying, a child should always seek help from an adult.  For example, if there is a threat of physical harm or actual injury due to pinching, hitting, kicking, the child should report this to their parent, teacher, principal – anyone in charge who can take charge.

Whether the bullying is verbal or physical, block bullies from social media.

When should a parent seek professional help for their child? Are there certain behaviors to watch for?

Signs that a child’s stress due to bullying has overwhelmed their coping abilities would include:  decline in grades, difficulty falling asleep or sleeping too much, avoidance of friends, loss of interest in former hobbies or lack of participation in activities, irritability, frequent physical complaints (tummy aches, headaches), and a significant change in mood that last longer than 2 weeks.  When a child demonstrates hindered coping, counseling should be considered to support their recovery.

As a parent, I’ve experienced being bullied by other parents in my son’s elementary school who didn’t understand food allergies. It’s very difficult to stand up to another parent, especially when I thought that some of these women were my friends. What can you offer to parents who are being bullied?

Parents can use the same coping techniques for both verbal and physical bullying as noted for the kids.

Such situations cause us grief – there is a loss of friendship and support we thought we could count on.  We experience disbelief, sadness, even anger.  However, in the face of such challenges, sometimes avoidance of the offending parent is the best option vs. continued pressure.  Sadly, sometimes a person just is not interested in the truth.  We need to realistically gauge the situation.  If our conversations and attempts to educate are going nowhere, we are wise to stop and wait it out.

It is said that we are only able to hear what we are ready to take in.  There is nothing we can do to speed this along for others.

Should a parent deal directly with the other parent? Should a school administrator or some other professional get involved? Or should the other parent’s behavior just be ignored?

In my opinion, it is best for parents to deal with school officials regarding instances that concern the health and safety of their child.  Parents should report instances of verbal or physical bullying.  They might consider giving their child’s teacher a “heads up” regarding teasing.

Parents can also know they can control other factors of their child’s environment:  they can avoid situations that tend to result in bullying episodes, they can choose to change teams, request that their teacher limit contact between kids, etc.

Is there anything else you’d like to add?

I think it is helpful to remember that sometimes other’s resistance or anger is more about their own insecurities and fear of change.

We need to put the focus on regulating our own emotions vs. going to war.  We can put our energy into creating conversations with others who ARE open to education and awareness.  We can put our energy into supporting policy that brings more safety for our food allergic kids.  We might explore bringing screenings of bullying documentaries to our school districts/communities.  Some fantastic documentaries include, “Finding Kind” and “Bully.”

For our children, we can seek places for them to feel a sense of belonging – the park district, youth groups, community theater, volunteering, food allergy groups.

Thank you Kristen!

 

Interviews, School & Food Allergies

Food Allergy & the School Lunch

The US Department of Agriculture oversees the national school lunch program and has a guidance document here.  On page 25 of this document, it states “The school has the responsibility to provide a safe, non-allergic meal to the child if it is determined that the condition is disabling.” Setting forth this statement is one thing – the application of it depends upon educated cafeteria staff, accurate ingredient listings of foods and in some cases good luck!

There are many ways to deal with the school lunch. We have opted for Morgan to ALWAYS bring his own lunch. We are very mindful of eating nutritious food, and the school lunches in our school district are based on a different idea of nutrition! Additionally, with Morgan’s multiple food allergies it has always seemed too risky to attempt finding a safe school lunch.

However, we are probably among the minority of even food allergic parents in our school district. Many times I receive questions from food allergic parents wondering how to create a safe menu for their child to eat school cafeteria food.

My first question to them is what is the motivation? Is it important to YOU that your child participate by eating a school “hot lunch” or is it important to your child? If it’s important to your child find out why. They may feel more a part of the crowd, and that is certainly important. If your child really isn’t thrilled with the idea, then maybe it’s best to send in a lunch made from home.

If it’s really important to your child, your next step would be to contact the lunchroom staff. Your school district will likely have a supervisor over the cafeteria staff who could obtain ingredient information. You could review safe foods and watch for those as they are available on a monthly menu. If your school doesn’t provide such a menu, then you may need to rethink if it’s safe to send your child in to school to figure out whether a food is safe. Remember, looking at a food to determine its safety generally doesn’t work. And taste testing to see if a reaction ensues is horribly dangerous!

Cafeteria staff will need to be trained to not cross contaminate foods. Picking up different foods with spatulas can cross contaminate the entire kitchen. If peanut butter & jelly sandwiches are made in the kitchen, and your child is allergic to peanuts, you may need to opt out of school lunches on pb&j days.

You will also need to find out how the cafeteria will let you know if a product’s ingredients have changed. The menu may have been safe in September, but by February the safe bread roll may come with sesame seeds, for example. Our school district provides a parent meeting in the beginning of the school year for all families dealing with food allergies. Parents can read all ingredient labels of all foods served. The glitch is that there is no system yet available to tell the parents if the ingredients have changed during the school year. And there have been problems with that for the severely allergic children.

Lastly, the cafeteria staff will need to be trained how to properly clean up. If your child can eat a few menu items, you will be relying upon them to clean up after unsafe foods are made in the kitchen area.

It takes a lot of work, and I’ve known too many food allergic children to have reactions eating cafeteria food. Yet some families have managed to find certain safe foods for their child to eat at school, and all is going well. It’s up to each family to find what works for you. After meeting Sara Shannon whose daughter, Sabrina, died at school after eating cross contaminated cafeteria food, Morgan and I decided his food allergies were too severe to take the risk.

Your state or school district may have guidelines for schools regarding special dietary needs especially for those students with food allergies. Check out the resources available and be cautious!

AllerSchool and Allergen Free Eating at School

AllerSchool is a complete end-to-end solution designed for the management of food allergies in K-12 school systems. It helps food service departments and school dieticians to manage complex issues involved with serving everyday meals to students with varying combinations of food allergies and dietary restrictions. is an interview with one of the two creators of AllerSchool, Mr. Dilip Chopra.

Mr. Chopra, can you tell us how you came up with the idea of AllerSchool? Who or what was your inspiration?

The inspiration behind this project was my daughter, who has had food allergies since she was only a few months old.  When she started school, we quickly realized the absolute need to be able to look into the ingredients of the food items served at the school cafeteria. The process of securing reliable ingredient information was so frustrating. We, as a family, started thinking that there had to be a better way! It is not that the school authorities did not want to cooperate with us, but the process of getting accurate information was just not very organized in general. As the years passed by, we came across other parents in similar situations but with children that had different combinations of food allergies, as well as different levels of allergic severities.

It became clear that there had to be a system that could quickly identify problem ingredients and generate safe food choices without requiring parents to go through the cafeteria’s hundreds of ingredient labels. We also realized the challenge that school food officials were facing by trying to accommodate all of the different combinations of food allergies into their daily menus.

As a result, AllerSchool designed to help students and their parents identify safe meal options, taking into consideration each student’s unique combination, and to help the school districts efficiently manage the complex issue of serving their students safe meals. AllerSchool was made a reality with the help of my friend Atul Ahuja, the other co-founder of AllerSchool and the technology architect behind this effort.

Please tell us about AllerSchool and how it works ‘in action’?

AllerSchool is a comprehensive solution with a lot of ‘bells & whistles’, all aimed at making it easier for students with food allergies, their parents, and the school food services departments to efficiently identify safe food choices from existing meal options at the school cafeteria.

Basically, a parent/guardian registers their student and their food allergy restrictions and based on that unique combination of food allergies, the system securely logs the parents on to a ‘parent portal,’ where they can view safe options for their child from the school’s existing menu. The parents are able to view detailed ingredients and can place direct electronic meal orders with the school cafeterias days, weeks, or months in advance.

AllerSchool aids school’s food services departments by automating the complex process of identifying safe meal choices for their students with allergies. It eliminates the process of manually identifying ingredients, including their many food derivatives. These tasks can only be efficiently carried out with the help of automated systems such as AllerSchool.

What do you hope it will accomplish for school districts?

For school districts, AllerSchool has the potential to increase meal revenues by increasing the number of students purchasing meals at the cafeteria. It also can reduce the risks associated with serving the wrong foods, improve parental involvement, and increase operational efficiencies that come with automation. By simplifying some of the complex issues related to food allergies, we hope schools are able to offer more inclusive meal opportunities for a larger number of students with food allergies.

How many school districts are currently using AllerSchool? What do they think about it? Has there been any upgrades or improvements made based upon user suggestions?

The AllerSchool system made its debut in Colorado Springs District11 last fall. Since most school districts implement new systems at the beginning of the school year, we hope to have more implementations this fall. We are currently talking to several school districts across the country which have expressed an interest in the system.

Both parents and the food services departments have expressed great satisfaction with the system. Improvements based on user requests are an on-going process at AllerSchool. We are continually upgrading, improving, and adding new features to the system.

How do you ensure that if ingredients in a product change that parents and students will know this?

The system is  a web-based, “real-time” system. Ingredient changes need to be communicated from the school food suppliers to the school food services and, if there is a change in ingredients, the district officials must make the change in AllerSchool, which is then instantaneously is reflected in all information that is available to parents. The system is in no way designed to replace manual responsibility and diligence at different levels of the food distribution process. Diligence, therefore, is an essential element of the process.

Does your system address cross contact in the cooking process? If so, how?

The AllerSchool system is designed to identify, detect, and interpret potentially unsafe items for individuals considering their unique set of food restrictions. It is not designed to address the issues related to cross-contamination. That falls within the realm of exercising care and diligence that must be carried out during the cooking and preparing processes.

With the AllerSchool system, is peanut butter still being served in cafeterias with your system?

The AllerSchool system has a unique feature that assigns an “Allergy-Friendly Index” (AFI) ranking to all recipes that are served at a given school district. In a nutshell, this is an index ranking that is computed based on the overall macro-allergy profile of a school district. So if peanut products are on the planned menu for a district with a large number of students with peanut allergies, the school food services will see a very low AFI ranking and a “flag” for menu items with peanuts, peanut by-products, and peanut derivatives. It is then up to the school district to decide if they still want to offer peanut products. AllerSchool provides the tools to make such decisions.

Is there anything else you’d like to add?

We (along with D11) were selected as the semi finalists in the Operator Innovations Awards by the National Restaurant Association yesterday. Here is the news link for their announcement.

It is an honor considering we started as just a small grassroots effort and we were selected under the ‘Food Safety’ category for food allergies management nationally. The award also increases the awareness of the subject in the food services industry in general which can only help the efforts of our entire community including FAAN.


Food Allergies & Asthma, Interviews

Interview with Dr. Hemant Sharma

Dr. Hemant Sharma is the Associate Chief of the Division of Allergy and Immunology at Children’s National Medical Center in Washington, D.C.  He is also the Director of the Food Allergy Program and site director for the National Institutes of Health Allergy and Immunology fellowship program.  Dr. Sharma obtained his medical degree from Columbia University, and completed his pediatric residency and chief residency at Duke University.  He trained in allergy and immunology at Johns Hopkins, where he also completed a degree in clinical epidemiology.  He is a regular contributor to a food allergy column in Allergic Living magazine and recently co-edited the “Food Allergy in Children” series for Pediatric Clinics of North America.

Dr. Sharma, thank you for helping us to learn more about asthma and food allergies. Dr. Ruchi Gupta’s recent research found that nearly 8% of US children under 18 have food allergies. Do you know of recent research that has determined how many children with food allergies also have asthma? In your practice, how many children have both?

Food allergies and asthma often do occur together.  Prior studies suggest that more than a third of children with food allergies also have asthma, and up to 8% of asthmatic children have a food allergy.  It is not uncommon for us to see something called the “atopic (or allergic) march” in children, where they start out in infancy with food allergy and then go on to develop asthma and hay fever later in childhood.

My son had Respiratory Syncytial Virus (RSV) at 3 weeks old. We heard that this would make him more likely to have asthma. Is this true? Is there any relationship between RSV and food allergies?

RSV infection in infancy has been shown to be associated with a higher chance of developing asthma later in childhood.  Interestingly, wheezing with rhinovirus (the common cold virus) in early childhood is actually a much stronger risk factor for later asthma than RSV.  It’s not entirely clear if these viruses cause asthma or are simply predictors of childhood asthma.  There is not any evidence for a connection between RSV and food allergy.

Is asthma the same as “reactive airways”? Is it medicated the same?

The term “reactive airways” is often used by health care providers to describe wheezing in early childhood, when it may not yet be certain whether that wheezing will resolve over time or develop into chronic asthma.  One of the hallmarks of asthma is reactivity or “hyper responsiveness” to triggers, which can lead to tightening around the airways during a flare-up.   Both “reactive airways” and asthma may be treated with the same medications, for example bronchodilators like albuterol, which help relieve this tightening around the airways.

Is there a different protocol for your patients who have just food allergies versus those who have both food allergies and asthma? How about children who have the atopic trifecta: food allergies, asthma and eczema?

The management of food allergies is similar whether a child has food allergies alone, or accompanying asthma and/or eczema.  Food allergen triggers should be avoided, and in some cases, this may help to improve eczema control as well.  In addition, emergency medications to treat food-allergic reactions should be available at all times, including epinephrine, antihistamine, and, if a child has asthma, albuterol.  For children who have both food allergy and asthma, asthma symptoms might certainly be part of a food-allergic reaction, but they are usually not the only symptom observed.

My son has severe peanut & tree nut allergy – among several other foods – and mild asthma. I’ve read that two of the risk factors for fatal anaphylaxis are peanut or tree nut allergy and asthma. (The third being a delay in the administration of epinephrine). Why are peanut/nut allergy and asthma implicated with this higher risk of a fatality? What should my son be doing to mitigate this risk?

Certain foods, like peanuts and tree nuts, have been shown to be associated with a higher risk of fatal reactions.  The reasons are not entirely understood, but likely are related to unique biochemical properties of these allergens.  It is also important to note that fatal reactions have occurred to many foods other than nuts.  Asthma is another risk factor for fatal food allergy reactions.  This might be explained by delayed use of epinephrine since people with asthma might often reach first for their inhaler when they are experiencing breathing difficulty, and overlook other signs of anaphylaxis.  For patients with both food allergy and asthma who develop abrupt respiratory symptoms, it’s advised they assess whether other symptoms of anaphylaxis are being experienced, and if so treat immediately with epinephrine.

For years we thought that my son had outgrown his asthma. When we went to National Jewish Hospital a year ago, he had a Nitric Oxide test that our local allergist wasn’t able to administer in her office. We then found out he had likely had mild asthma all along and had gotten accustomed to a tight feeling in his chest. Our allergist’s testing methods weren’t refined enough to pick up the problem, and my son didn’t know he was having difficulties. Should we parents be looking for certain signs of asthma if our children have other allergy issues?

The most commonly used test to evaluate lung function in asthma is spirometry.  This form of lung function testing measures obstruction to air flow, usually before and after receiving a bronchodilator medicine, like albuterol.  Nitric oxide testing, instead of measuring obstruction, detects airway inflammation, which might be present in uncontrolled asthma.  While this test may provide useful information in some cases, it cannot by itself diagnose asthma, and is not a test that needs to be done for every child with asthma.  In fact, studies have not shown that using nitric oxide testing helps to improve asthma control, beyond relying on a thorough assessment of symptom frequency, need for albuterol and spirometry results.

There is more research recently to find a cure for food allergies. I’ve read that asthma kills 9 persons a day sadly, in the USA alone. What research is there to find a cure for asthma? Do you see any great new asthma medications on the horizon?

Research is also under way to identify new treatments for asthma.  Omalizumab (Xolair) is an example of a new asthma medication that has helped patients with severe allergic asthma, who failed to respond to other asthma treatments.  It functions by blocking the binding of the IgE antibody.  This medication is also being studied for potential use in food allergy.

Thank you Dr. Sharma!

 

 

 

 

 

Interviews, School & Food Allergies

Inhalant dairy allergies & a creative solution – a robot!

Below is an interview with Lauren & her Mom, Melissa. Lauren’s inhalant dairy allergies forced a creative solution with going to school!

Lauren – can you tell me how old you are and what your allergies are? 

I am 14 years old and I’m allergic to all forms of dairy including goat milk.

Have you ever gone into anaphylaxis?

I have been in anaphylaxis over 40 times. If my EpiPen wears off I need more EpiPen before I reach the hospital. Sometimes I only need one EpiPen if it’s just a little contamination, but many times I need at least two EpiPens and then more meds at the hospital. If I do not take my EpiPen immediately I get VERY sick. In the last few years I have gotten better about taking my Epi right away and this helps me not get as sick as I used to get.

One time I swallowed a bite of cheese without knowing it was “real” cheese ( I thought it was my soy cheese that I always eat) and my throat hurt immediately, then I got a blister on my lip and then I got red all over my body like a sunburn. I was throwing up and felt very sleepy. I started wheezing. I began getting hives that burned all over. I was screaming that my back burned. All of this happened in minutes, and got worse until we arrived at the hospital. My parents said my eyes rolled in back of my head in the trauma room. They said the doctors were very helpful and knew exactly how to help me. I fell asleep. When I woke up I felt better and we spent two nights in the pediatric intensive care unit.

Lauren robot

 

Tell me about your robot. How does it work? Can you see the students and teachers as you sit at home?

The Vgo works like Skype on wheels. I log on at home and then I drive my Vgo to class from home. I can see the teacher and the students, and can even work on group projects together or with a partner. If I want to raise my hand I press a key on my keyboard and a light on the robot flashes so the teacher can call on me.

How did you feel about your safety at school with your food allergies before getting your robot? And now?

I was always worried about what was going to happen to me that day…would the ambulance have to come to school again? Would I be careful enough? And now that I go to school with this robot I feel safer BUT I still want to go to school.

Do you participate in extra-curricular activities like sports, clubs or dances?

I have done field hockey this year but I have to make sure I’m wiping everything down and I can’t go on the bus to away games and I can’t be around their snacks and I can’t do food events with them. I’m in karate also. I also am involved volunteering at the hospital and other philanthropies around my town that are safe. I also volunteer at our church (but I can only do certain jobs that are safe.)

How do you socialize with your friends?

When my friends come over they need to be sure and wash up and don’t have it on their clothes. When they come in and they don’t eat obvious dairy before they see me (like pizza cheese doodles or Doritos). Sometimes I go to other friends houses if they clean before I come. Sometimes I go places with them if there is a low risk of contamination while I’m at a place. But there is a high risk with most things. I try not to take high risks.

Melissa – when did you know that Lauren was no longer safe at school and that something needed to change?

We knew that Lauren was no longer safe in school when she went to one of her classes and walked into the room after they had a pizza party and her throat began to hurt. The teacher washed down everything correctly but it was still airborne and enough was still around to cause a significant reaction.  She took her EpiPen, the ambulance came and took her to the hospital and she was on steroids for a week that time.

Did Lauren have a 504 Plan and Health Care Plan prior to having the robot?

Yes she did, we felt that it was important to have a 504 & a Health Care Plan , but our needs became above and beyond what the school could handle. To keep her safe at school would mean to eliminate dairy. Also when she has a reaction she needs to take epinephrine immediately or she becomes way too sick. We could not take the chance that she would not get medicine immediately. Also her doctor said we should take her out of school before something happens that we can’t “get back” from.

How did you get the school to pay for the robot?

Lauren’s home bound supervisor was working hard on finding a way for Lauren to attend school safely. This past summer he was reading “Sports Illustrated” and read a story about a boy in Texas who went to school using a robot. He thought that this robot would be the safest way for Lauren to get to go to school. He went to the Asst. Superintendent to ask for her support to let him try this “robot” out with Lauren. He purchased the unit out of his home bound budget. His concern was having Lauren spend her freshman year in school.

What do you hope for Lauren as she ages through high school and goes into college and beyond?

Lauren wants to work, go to college, become a forensic scientist, get married and start her own family. Our hope is to find ways to keep her safe through living out all of her dreams.

Is there any hope for her dairy allergy to lessen?

Our hopes for Lauren is that the Chinese herbal treatment that she is on (from Dr. Li at Mt. Sinai Hospital in NY) will work! First the hope is that she will stop reacting from inhaled dairy, and then of course we wait for the day of the cure. In the mean time we continue to remind her to wash hands, keep her hands out of her mouth, remind others to wash hands, especially when they come in our home. And remind ourselves to  keep our eyes open for hidden dairy, or airborne dairy. Also we need to read labels over and over and find ways to live in a dairy laden world.

Is there anything else you’d like to add?

Dairy is in so many things…and in surprising places. Lauren has been in anaphylaxis so many times because of a combination of factors. First it was hard for our family to understand how sensitive she was….it started with eliminating dairy from my own diet so I could continue to nurse her but it went on to having to eliminate dairy from our home because I would contaminate her from the dishwasher items in addition to cross contamination issues. Dairy has been found in places I never would have thought of. We have had so many mistakes because we could not always grasp the seriousness of invisible dairy and because of human error…like manufacturers that make mistakes in labeling. We now know that more than 20% of medications have dairy. We find out things like that the hard way. Food labeling laws have made life MUCH easier for us. Restaurants like in Disney World makes our life easier when we go there. And people who “get it” also make life easier.

Thanks Lauren & Melissa!

Scholastic News also ran an article on Melissa and her robot. You can read that article here.

College with Food Allergies, Interviews

Follow Up interview with College Student, Carlo Steinman

Carlo, when we spoke last year, you were getting ready to attend the University of Chicago. You have allergies to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables. What did you find most difficult with eating in a dorm cafeteria on a daily basis?

What I’ve found most difficult is finding a good variety of protein for me to eat. There hasn’t ever really been a problem with there being food for me to eat, but there have been some difficulties with the variety of food, and I’ve been forced to have the same foods over and over, which although it keeps me fed, is somewhat frustrating. There’s always salads and some vegetables and fruits, but protein is harder to come by.

The dining hall is separated into various stations, each serving a certain type of food. There is a Euro Station–mostly carved meats (but almost always with sauces/dressing) and some sort of vegetables, the Halal Station, the Kosher Station, the Harvest Station that serves vegetarian dishes, the Pasta Station, the Salad Station, the Deli Station, the Pizza Station and the Grill Station. You can go around to any of the stations and take what you want, making a meal out of whatever any of the stations are serving that meal. I have to avoid most of these stations. The Pasta and Pizza Stations I pretty obviously must avoid, and the Halal Station and the Harvest Station frequently serve things I can’t have, because of their restrictions on certain types of foods. The Kosher Station occasionally serves things I can eat. The Deli Station is full of cross-contamination, as is the Salad Station.

The Grill Station is just a grill. It makes hamburger patties (you can add your own bun and toppings later), grilled chicken breast, and grilled cheese (which is prepared on a separate grill from the hamburgers and chicken). It makes these things for lunch and dinner every day, which provides a nice stability to the ever-changing options that the other stations offer.

Did you have any allergic reaction?

Thankfully, I have not had any reactions while at college. I think part of that is because I’ve been extra careful, perhaps even more than I usually am. A large part, though, has to be attributed to the dining staff, because they really are trained about cross-contamination and they are very willing to change gloves or use a separate pan. That said, I try to stay away from stations that could pose any sort of risk.

Did you find any other students dealing with similar allergies?

I haven’t really found anyone else with comparable allergies, both in number and in magnitude. There are a few people with intolerances (lactose intolerant) and maybe one or two people with peanut or tree nut allergies, but there aren’t very many people with allergies or anyone with allergies coming close to how many I have. That said, everyone I’ve met has been knowledgeable about food allergies or very interested in learning about them, so I’ve felt safe among my peers even though they don’t have allergies.

How do you feel about next semester and eating in the dorm cafeteria?

One of the things I’m doing over this break is meeting with my nutritionist at Mt. Sinai’s Jaffe Food Allergy Institute. Hopefully, I’ll be able to work with the nutritionist to develop strategies for me to successfully maintain a healthy diet eating in the dining hall. Then, I’ll take those recommendations and meet with my contacts at school, to work it out. I’m also going to sit down again with the dining hall staff and my contacts in the administration and see if we can’t get some of the things that have been proposed put into action. Other than that, I’m really looking forward to it. I’m excited for my classes and looking forward to Winter Quarter, despite the weather.

For your sophomore year, what living arrangements are you planning?

At the University of Chicago, the dorms work in a house system (kind of like Hogwarts). In your first year, you are placed into a house that contains ~40-100 people, first through fourth years. You can stay in that house for all four years, if you would like, or you can move off campus starting your second year. I’m planning on staying in my house, because I love the people in it and living on campus makes everything significantly easier. I may, however, start going to the grocery store more frequently and making more of my own meals to avoid the dining hall. I would, in that case, change my meal plan from the unlimited (which is mandatory for all first years and really nice) to one that more fits the changed situation.

Did you go hungry on any given day because of a lack of safe food?

Thankfully, since the Grill station is always open and serving plain chicken breast and plain hamburger patties, there was never a day where I went hungry. There were certainly days where the lack of variety was frustrating, or two or three day stretches where the only safe food for me would be from the Grill station, but I was never walking around constantly hungry, except as much as all college students on the go do, but that’s just the nature of dining hall food.

Based upon your experience, what would you tell a current high school senior with food allergies looking at college?

Really, the best thing I can say to a high school senior is that food allergies don’t need to be another thing stressing you out. The entire college process is an arduous one, and you don’t need another stressor. Pick a school that you think is the best fit for you academically and socially. All the schools I considered and all the schools that my friends with food allergies go to have been pretty good about dealing with food allergies. Don’t let food allergies dictate what college you go to. You will be able to work with the dining services staff, or just go around them and provide for yourself, if need be. I’m not going to lie and say it will be a walk in the park, but you can successfully and safely manage your food allergies in college. It isn’t easy, but nothing about living with food allergies is. That doesn’t mean that it isn’t possible, and that especially doesn’t mean that your food allergies will hold you back from having a happy, successful, normal life. Don’t let your food allergies add yet another stress to an already stressful process and don’t let your food allergies stop you from doing what you think is best for you academically and socially.

Again, I hope these help!

All the best,

Carlo Steinman

 

 

Interviews, Research for a Cure

Interview with Dr. Danny Soteres

 

Daniel F. Soteres is on the clinical faculty of the University of Colorado Health Sciences Center in Denver, and has been in private practice at Asthma and Allergy Associates and Research Center in Colorado Springs and Pueblo since 2005. Dr. Soteres received his medical degree in 1998 from Tulane University School of Medicine in New Orleans. He simultaneously earned a master of public health degree, completed a four-year combined residency in internal medicine and pediatrics, served as chief resident in internal medicine, and completed his fellowship in allergy and immunology.

Dr. Soteres, there are many research studies currently trying to find a cure for food allergies. Which research studies do you feel are most likely to yield a cure?

There are a bunch of great studies going on right now and I believe that the next 10 years will reveal a lot more options for those with food allergies.  Currently food-specific and non-specific therapies are being evaluated.  The therapies that are most promising are a Chinese Herbal formulation, FAHF-2 and Oral Immunotherapy (OIT) protocols that may be given with anti-IgE antibody (aka. Xolair).

FAHF-2 is a mixture of 9 herbs that completely blocked anaphylaxis during a peanut challenge 5 months after therapy.  This has been studied in Phase I clinical trials and was safe and effective.

There were 19 subjects with peanut and tree nut allergy.  Two patients had some mild GI symptoms.  Currently there is a Phase II clinical trial  for safety and efficacy for patients 12-45 years old with peanut, tree nut, fish, sesame, or shellfish allergy.

Let’s define Tolerance versus Desensitization.  Tolerance means that the food can be ingested safely despite long periods of avoidance.  Desensitization means that protection is dependent on regular ingestion of a food allergen.  If dosing is interrupted or discontinued, the protective effect might be lost or decreased.

Oral immunotherapy (OIT) is a desensitization process.  Small amounts of a specific food are mixed in a safe food and ingested in gradually increasing doses.  Dose escalation occurs at a hospital or clinic and then daily regular doses are continued at home.  This desensitization protocol has been successful in patients with milk, egg, fish, peanut and other food allergies.

From the medical literature some patterns have emerged: 10-20% of patients fail the initial build-up phase due to reactions; 10-20% do not achieve the full maintenance dose. So, overall 50-75% achieve and tolerate the recommended maintenance dose.  We do not know if those who use lower maintenance doses will become tolerant over time.

Humanized Monoclonal anti-IgE (Xolair) is currently approved as a treatment option for people with moderate to severe asthma.  It has also been shown to increase tolerance to peanut exposure, but the study was stopped early.

********Despite all the research many questions remain: Using anti-IgE and OIT together has not been studied yet.  Hypothetically, the anti-IgE should reduce the risk of reactions during the OIT procedure.  For OIT more studies are needed to determine the optimal build-up schedule, the optimal maintenance dose, ideal duration, degree of protection, efficacy at different ages, severity and type of food allergies, and the need for patient protection in patients treated at home.

My 15 year old son, Morgan, is currently receiving allergy shots/immunotherapy for his environmental and pet allergies. Would that disqualify him from ever participating in a research study if he were continuing to receive this treatment? Many of the kids (and adults) who are allergic to foods are also allergic to environmental allergens.  I do not think that allergy immunotherapy of environmental allergies will exclude Morgan or anyone from participating in food allergy research studies.

Would children in puberty not be good participants in a research study? Are there other criteria that would automatically disqualify a person? Clinical research trials are designed with specific inclusion and exclusion criteria.  These studies will have to be done in adolescents as well as very young children.  The only pitfall with the adolescent age group that I can think of is the issue of compliance.  If an investigator (the physician in charge of the study at a site) determined that a patient did not have the maturity to take medicines, pursue regular follow up visits and responsibly keep a short daily diary then they may exclude that patient from participating.  However, this is a rare occurrence and I don’t think it will prevent study of food allergy therapies in the adolescent population.

I have heard that 15 to 20% of participants in Wesley Burks’ research study of the ‘peanut flour’ have had to drop out of the research because of severe reactions. And that other children have had to drop out because of the onset of Eosinophilic Esophagitis. This seems frightening to me to subject a child to these possibilities. Yet there are those children who are now eating peanuts or drinking milk, who never thought that would be possible! How does a parent wisely choose whether their child should participate in a research study?

Each parent needs to collect information about the study and discuss it with their child. Next, they should discuss the study with their allergy doctor and the investigators performing the study.  Specific questions should revolve around safety precautions taken during the study especially at times when you or your child may be asked to eat one of your food allergens.  Desensitization protocols are not for everyone.  However, the process of build-up and maintenance dosing to their food allergens can be quite liberating for individuals and families who live in fear of severe reactions.

The complication of Eosinophilic Esophagitis (EoE) has been reported but this has not been a common problem with OIT.

Does your office participate in any of the research? If so which one(s)? We are not currently involved in any of the current research on food allergy.  These studies are limited to large academic centers.  Our research center is ready to go when the academic centers begin preparing some of their treatments for FDA approval and mainstream care.

What is the peanut desensitization protocol that your office is doing?

The peanut desensitization protocol that I am using in my office is based on the current protocols that have been published in peer-reviewed journals like the JACI.  I don’t call it “research-based” because we are not doing this in conjunction with any pharmaceutical companies or with the academic centers that have been doing research on this issue.  To my knowledge there are about half a dozen private practice clinics around the US that are doing the same protocol as I am doing.  Here, we have performed peanut desensitization on about 6 kids and one adult with fairly good success.  One child had a systemic reaction during the build-up phase and they dropped out.  The adult was doing very well, but had a systemic reaction shortly after going on maintenance.  He also decided to stop the procedure.  As I stated earlier, peanut desensitization is NOT for everyone.  I’ve probably talked about a dozen families out of pursuing it.  Recently I advised a family whose child has EoE not to do peanut desensitization due to the risk of  worsening the condition.

Thank you Dr. Danny!

 

Emotional Aspects of Food Allergies, Interviews

Emotional Aspects of Food Allergies at School

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. A child in preschool might not notice receiving a ‘safe snack’ from their snack bin; while an elementary child will wilt at the teacher giving them something different to eat. A middle school child might rebel against food restrictions, while a high school age child may go further and tempt fate by eating one of their food allergens. My friend, Gina Clowes, of AllergyMoms, and I have had multiple conversations about the emotional piece of the food allergy diagnosis. Below is just a piece of what we’ve experienced with our children at school, and our hope that our children can overcome these sometimes difficult situations to better understand their food allergies, yet not be defined by them.

Nicole: When my son, Morgan, started preschool I was pretty emotional about him leaving me for even a few hours twice a week. I’m sure many parents, especially mothers, feel that way if their child hasn’t been in daycare.

Morgan had been at home where I could carefully control his environment and monitor his severe food allergies (peanuts, tree nuts, sesame, fish & shellfish), his eczema, asthma, and severe pet and environmental allergies. I was so upset when looking for a preschool (this was in 1999) that every private preschool that I interviewed in our city (Colorado Springs), wouldn’t admit our son. They either didn’t want the liability of a child with severe food allergies, or they said they weren’t willing to be trained on the EpiPen.

I never thought that I’d receive that response. I figured that if I trained the staff how to administer an EpiPen, and if they kept his allergens out of the classroom, he would be safe at school. I didn’t want to fight for my child to go to a school that didn’t want him to attend. Instead we found a public preschool that provided everything we wanted, and it was a wonderful experience for him and for me. Morgan was always fine to have his own snack that was different from the others in the classroom. He knew it was a safe snack, and he felt included.

I had to mature emotionally in order to advocate for my child – asking for just what he needed and not more.

Gina: The first year my son attended preschool, I did things the way many allergy moms had done before me. I explained my son’s allergies and trained the staff on avoiding, recognizing and treating allergic reactions. He had his own snack every day and for birthday celebrations, the other parents were supposed to let me know a few days in advance of bringing a treat, so that I could bring something similar for my son.

One day, I arrived to pick him up a few minutes early and I peeked inside the classroom. I saw 15 kids laughing and devouring beautifully decorated cupcakes piled high with icing and sprinkles. My son sat there looking forlorn eating wheat-free pretzels and drinking spring water.

Something clicked in me and I wondered how a teacher would think it was okay to serve 15 three year-olds and leave one sitting there.  How can it be a celebration when one child is excluded?

When I talked with other allergy moms, I found out that a lot of them tackled this (birthday exclusion) issue with the “safe snack box”  When I first heard of this, I thought it was an appalling option. I call it the “We’re-planning-ahead-to-exclude-your-child-box.”

It’s one thing for our kids to have to bring their own treat to a friend’s birthday party or to a relative’s house for a holiday. To me, that is understandable. But school is for learning. And if a teacher or school administrator decide to allow children to celebrate birthdays or other holidays at school, I believe these celebrations should be inclusive.

Imagine a video of one allergic child from kindergarten through first grade, second, third, fourth, fifth…dozens of birthdays over the years..where the kids look longingly at the delicious cupcakes being passed around and there is that same child who cannot partake. How can anyone think that is okay?

So, I’ve never sent a safe snack box to school for celebrations, and I feel so grateful that my son has been included in safe celebrations.  However, I have softened my stance over the years and I do realize that what works for my family may not be what  works for others. If parents and their children feel happy with the “Safe Snack Box” option, I’m happy they’ve found something that works.

Nicole: My son never had upset by eating a treat that’s different from everyone else, and I guess I’m lucky that he didn’t!

He has always viewed it that his snack is safe, and that makes it the best food in the world! When he went to camp during his 6th grade school year – a ‘rite of passage’ with all 6th graders in our school district – he brought his own safe food rather than rely on the camp cafeteria to cook for him. So many of his classmates were envious of how wonderful his food looked in comparison to theirs! They begged him to save them just a bite or two!!

Gina: The other issue is that this situation (birthday cupcake celebration), is a school activity regardless of who brings in the treats. Teaches and/or administrators make the call as to whether to serve the food or not.

If I declare the first Tuesday of every month, “Spaghetti and meatball day” and decide to serve that to the class, I think they’d turn me down! lol

We need to get away from the thinking that “we” (allergy moms) have to convince other classroom parents to include our kids or keep them safe.

That may be the case for playdates, but this is school.

Children with food allergies have a right to be included at school.

Most schools have a policy that students can only give out birthday invitations in the classroom, if they are going to invite all of their classmates. Understandably, the teachers don’t want any students to feel excluded.  But clearly, when in-class birthday celebrations occur and everyone is sharing cupcakes except you, you’ll feel left out.

And there are many, many reasons for restricting food or foods from the classroom anyway. We have a nation where 63% of adults and now 35% of American children are overweight or obese. Let’s find a healthier way to celebrate!

Nicole: Another emotional aspect of food allergies at school that we have found is the potential for bullying. It seems that some children are just looking for how to make others feel inferior, and sadly food allergies makes a child such an easy target! And some parents I have dealt with have their own methods of bullying too!

My son’s bullying experiences have been taken very seriously by the school administrator(s) and immediate and decisive responses have been given toward the bully. In fact, the first incident where a child bullied my son was in 1st grade. He threatened Morgan with a peanut butter cracker saying, “I’m going to kill you with this cracker!” Morgan didn’t take the incident very seriously, yet his friend did and reported it to the playground monitor. The offending child was hauled into the Principal’s office, his parents were called and he was suspended for the rest of the day! It was a decisive move, and I really appreciated the Principal taking swift action. The wonderful thing is that today Morgan and this boy are good friends! And they don’t even have to talk about the incident anymore.

I didn’t get into the middle of the incident, and never felt the need to discuss this little boy’s actions with his parents. I allowed the elementary school Principal to do her job, which allowed me to work on forgiveness – which is very difficult when someone threatens your child! And it also allowed me to see how our school district needed guidelines for severely allergic students to assist schools to deal with situations like this.

Gina: Regarding the bullying issue, both of my kids have been bullied at different various times. It’s never fun for a parent to have to deal with this but when you know your child is vulnerable medically, it’s even more disturbing.

I agree with you though that some of this starts with the parents. And that is why I think it is important for allergy parents to really become informed so they can truly advocate for their child. And you can still do this nicely.

A lot of times, teachers will ask the allergy parent to write a letter, or speak in front of the classroom asking them not to send in a particular food or to please consider bringing something safe for the allergic child.

I think this approach sets the wrong tone. It perpetuates the notion that accommodating allergic children is optional or that it is up to the other classroom parents.  This is a potentially life-threatening medical condition and if accommodations are required, they should be implemented. It should never be left to the good nature of other classroom parents.

So before I dismount from the soapbox, let me say that I also really believe in the adage “If it ain’t broke, don’t fix it.” I know parents who have taken a completely different approach from mine, and it’s worked beautifully, and that’s terrific.

Nicole: Thanks Gina for a great conversation about just a few of the  emotional aspects of food allergies in schools. It’s emotional for parents and for children with food allergies. Together we can help our children grow into capable advocates for themselves!

 

Interviews

Interview with Gina Clowes, AllergyMoms

Gina, could you please tell me your practice name, how long you’ve been in business and how a potential client can reach you online or by telephone?

AllergyMoms LLC.  I have been in business since 2006. I can be reached at [email protected] or (724)432-3811.

I help parents adjust to life with a child who has life-threatening food allergies.

I am a food allergy educator, speaker, certified life coach, and author of the best-selling children’s book “One of the Gang: Nurturing the Souls of Children with Food Allergies”

I write a regular column in Allergic Living Magazine called “The Parenting Coach” where I share my passion for supporting the emotional needs of families with food allergies.

Clients can purchase individual coaching packages here:

http://www.allergymoms.com/modules/xoopsfaq/index.php

My “Ten Things Children with Food Allergies Want You To Know” eBook and Teleseminar Recording is available here:
http://www.allergymoms.com/10things.html

I periodically send information on new group coaching and teleclasses through my newsletter.
Newsletter is available here: http://visitor.r20.constantcontact.com/manage/optin/ea?v=0016DNjNiidDhSvcZnoj1cK5g%3D%3D

What training and/or degrees do you have?

I am a Certified Life Coach and will have Master Coach Certification in July 2011. I have a BA in Liberal Arts and Social and Behavioral Science.

Do you have food allergies or intolerances yourself? Or do you have children who do?

I have two children. My ten year old son has multiple food allergies. (Milk, wheat, egg , peanuts, tree nuts and more.)

What is your “typical client”?

My ideal client is:
The mother of a child who has been recently diagnosed or recently had a reaction and the parent is feeling overwhelmed.

 

 

What do you feel you can offer a client who is suffering from anxiety about their food allergies or celiac disease diagnosis?

The majority of my clients are overwhelmed, scared and depleted. They need support of a person who has been through exactly what they are going through. Our needs are unique and most people don’t understand the tremendous impact that food allergies have on every aspect of life.

I help clients feel calm so that they feel comfortable managing the shopping, cooking, label reading and that they are able to avoid, recognize and treat allergic reactions.

I help clients feel confident by showing them that overwhelm and fear can be part of the process and that we can work through these emotions and get to confidence and competence.

I show clients “how” to explain food allergies to others so they can get the support, care and compliance they need.

Once they have been fully heard, we can look at ways for them to integrate self-care into their daily lives and then everything starts to improve. The joy and the fun of life comes back, many times even more than before.

What type(s) of therapy do you practice?

A life-coach helps a person overcome obstacles to living a full and joyful life.  We do not practice therapy.  Some clients present with therapeutic issues and I refer them to a mental health professional.

Is there anything else you’d like to add?

The parents I work with find tremendous benefits in having their experience validated; opening up to see all of the options available for creating a safe and joyful life, and having someone support them as they begin on this path. It is a different way of life and the adjustment period can be brutal. But it is manageable and there is light at the end of the tunnel. I just point the way!



College with Food Allergies, Interviews

Interview with Michaela Smith – Age 20

Michaela, what food allergies (and intolerances) do you have and how old are you?

I am twenty years old. I am moderately allergic to wheat and have severe gluten intolerance and other intolerances to beef, pork and lemon. I have not been tested for Celiac disease with a biopsy because I went off of wheat and noticed how much better it made me feel and didn’t want to start eating it again. GI doctors require with celiac tests that I still need to be eating wheat and my doctor suggested that I not do that.

What happens if you get exposed to your allergens?

I only have a reaction when I ingest the foods. My stomach hurts really badly and my intestines are usually unhappy. I can sit in a bakery and have no issues at all.

How did you handle your wheat food allergy and intolerances in high school?

High school was an interesting experience. I was in the high school band for all four years. I kept trying to explain to my band director that it would be great to go to a restaurant that had a huge salad that I could eat and then I would have a few snacks when we got back to the hotel. I would at times sit in an Italian restaurant, because that is what the band director picked, and could not eat anything. I had found that even some Caesar dressings had wheat in them. It was a very frustrating event for me even though I knew I had snacks at the hotel.

Another experience that I had in high school was with the Colorado Springs Youth Symphony’s Pikes Peak Winds. I had the opportunity to go to Japan with them. I was really nervous at first. However, my mom helped me out by finding a translator that made little cards and sheets of paper with all the food that I could and could not eat. I went over there for about 11 days. There were some meals that had an unknown ingredient in them, and I decided that it would be a poor idea to eat it because I did not want to get sick. I brought little snacks in my suitcase so that if I did not eat a meal I could at least have a snack. I brought white rice crackers and apple sauce. Most of the kids on that trip watched out for me and helped me as much as possible. I lost a little bit of weight during the trip, but I was also really busy and had an amazing time. Food for me on that trip was definitely not the sole focus.

What is your experience of colleges’ awareness of food allergies?

Some Colleges’ awareness is surprisingly slim; at least that is what my experience has been. Though the University of Denver did an excellent job with accommodating me when I went to a Music Camp there. It was about a 2 week camp and an amazing experience. My mom got in touch with the head chef at the dining hall that we were going to be eating in. The chef had said that he could cook all of my food and I would not have to bring too much. We gave him a list of the foods I can and cannot eat. I came up with a menu for him to follow so at each mealtime, my meal would be ready. They made some of the best Turkey Burgers I have ever had. And the chef made some amazing sweet potato fries. Man oh man was it good. I did not get sick once, and they were truly very good at accommodating food allergies.

My experience at Colorado State University was a little different. At first they said that they would be able to accommodate my food allergies. Though they sent a menu for the week at band camp, and there truly was no way for that to occur. So I ended up bringing my own food that I had in my dorm room refrigerator. I would do all the band stuff at camp, and then I would come back and eat whatever food I had brought by heating it in the microwave. Many of the students were really jealous of the fact that I had so many different foods in the refrigerator and was wondering if they could have some. I said no, I was not trying to be rude, because I only had a certain amount for the week. Overall that was another good experience with food.

What issues did you run into when looking at colleges in Colorado and their awareness of food allergies?

Well I found a few issues. At the University of Northern Colorado they had said that I could live in an apartment or I could live in the dorm and use the kitchen in the basement area. However there are many people who use that area to cook cookies and cupcakes. The last thing that I wanted was cross contamination within a meal that I was cooking. And there was a significant possibility that not everything is perfectly clean. So as wonderful as that had sounded, that didn’t seem to work for me. The apartment idea felt like too much to take on. It would be cooking and grocery shopping in addition to going to school at the beginning of entering college.

The other school that I was looking at was Colorado State University. They had stated that they could handle everything and anything. Though the more questions that I had asked with my food allergies, the more it became apparent that it might not be the best choice. They demanded that I live in the dorm, and their awareness was more about peanut allergies than celiac disease or other intolerances. They weren’t willing to change their menus for me – they just wanted me to find something to eat that was already on the menu and they weren’t good about listing ingredients in the foods.

Since you didn’t live in a dorm, what did you choose to do for living arrangements your freshman year of college? And now?

I chose for my freshman year to live at home because it seemed like a safe place to be. I was a little nervous moving out because of some of the experience I had in the past with people not necessarily understanding my food allergies. Though today I have moved out and live with one roommate in a house. He and I get along great. I have my food and he has his. I have one pan that I cook most of my food in, and he has his. It has worked out just perfectly.

How do you handle your food allergies now?

Today I eat probably about 99% of my meals at home. Probably about once every six months I will go out to P.F. Chang’s with friends because they have a gluten free menu. Though I know that most people my age have food always surround them. So instead I invite people over to my place and cook them a good meal, and then everyone is happy. Most people are surprised at how good Gluten free food really is.

Do you tell your dates about your food allergies? How do you go about doing that?

I do tell my dates about food allergies. At times they have wanted to go to a certain restaurant that I can’t eat anything at. They wonder why I can’t eat there so I explain what happens to me when I do eat wheat. Most of them understand and just want the best for me. Usually after that they let me pick the restaurant so that I know I am eating at a place that is fun and safe for me. My personal favorite is P.F. Changs!

Thanks Michaela!

Mom’s Comment: We have found that the colleges/universities that cost more in tuition are much more likely to have sound accommodations for students with food allergies. That doesn’t mean that a state university won’t make accommodations – but as in the case of offering an apartment as an alternative to dorm living, the alternative may not be easy for a college freshman to work with!

 

College with Food Allergies, Interviews

Interview with Carlo Steinman – Age 18

Carlo, how old are you and what are your allergies?

-I am 18 years old. I am allergic to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables.

Have you ever experienced anaphylaxis?

-I have been very fortunate to have not ever experienced anaphylaxis.

Since you haven’t experienced anaphylaxis to your food allergens, how did you find out you were allergic to the foods you listed?

– My pediatrician was very good about food allergies and suggested to my parents that I get tested, when I was just a newborn, because he suspected that I was a person who was likely to have allergies.

What types of symptoms do you experience if you ingest your allergens? Have you ever experienced contact or inhalant reactions to any of the foods?

-I am anaphylactic to Dairy, Eggs, Peanuts, Tree Nuts, Sesame, Fish and Shell Fish. Wheat is a gastro-intestinal reaction. Soy and some fruits and vegetables cause me to develop hives, throw up, feel my throat tingle, wheeze and symptoms such as that. I start to wheeze and cough if I’m in the same room as an egg being cracked. I haven’t had any major contact or inhalant reactions.

Do you still carry an EpiPen or two “just in case” ? How do you carry it?

-Yes, I always carry my EpiPen. It fits right in my pocket, no matter what I’m wearing (and I wear some tight, tight pants), so it’s not really a burden to carry it around.

You’re graduating from high school in a few months. Where do you plan on going to college?

–I’ll be attending the University of Chicago next year.

Did your food allergies play a part in your choice of a college?

–No, my food allergies didn’t play a part in choosing a college. I applied to the colleges that I wanted to go to and was confident that I could make it work.

How are you planning on managing your food allergies in college? Will you live in the dorm or in another living arrangement?

–I’ll be living in a dorm. I’m going to sit down with the Dining Services and talk over my allergies and what they’re capable of doing. When I was touring UChicago I had a meal in the dining room, and they have all the allergens labeled and all the ingredients displayed, for every dish, so I’m confident that I’ll be able to manage my food allergies well and eat in the dining halls.

I’m so impressed that the University of Chicago labels all of their food ingredients in the cafeteria! Did other colleges/universities that you debated attending do the same thing? Or is UChicago special in this way?

-A lot of the schools I considered attending did the same thing, or had something similar. I’ve found that, because there are so many different special diets that people follow, college dining services are very on top of disseminating what goes into their foods and making sure that there isn’t any cross contact–a fact just as important to a strict vegan as someone with major allergies. In the past I’ve attended programs on college campuses and I can say that the dining staffs have been nothing short of great about managing my allergies.

Do you tell your dates about your food allergies? How do you go about doing that?

– I’ve found that being honest and straightforward is the best way to go. A lot of dates/get togethers happen at restaurants or somewhere where there is food anyways, so it’s not as if you can avoid the topic. Mostly, though, people already know, because if you’re friends with me (which comes before dating), you’ve almost certainly been at a meal with me. Normally, when I meet new people and they have a meal with me, I explain it to them, because they get curious after seeing me ask questions to the waiter/chef and have such plain, sparse meals.

Thanks Carlo!