0 Food Allergy Counseling: Interview: Lily Roth of Food Allergy Survival Guide College Edition

During the 2014 FARE teen conference a few months back, I was following their twitter feed and discovered a new resource for teens entering into college: Food Allergy Survival Guide College Edition. Written by a teen Lily Roth, and her mom, Nancy Popkin, it offers excellent, first-person, real world advice about the whole college process, from choosing the right program for you through that first scary year on your own.  

*As with everything health and lifestyle related, please check with your medical health provider about your specific needs.*

I had a chance to ask Lily some questions about her excellent site. Read on!

***

Allergic Girl: What are your food allergies?

  

Lily Roth: I have anaphylactic allergies to milk, eggs, seafood, tree nuts, nightshade vegetables (potato, tomato, eggplant, pepper) and spices like cayenne and paprika, plus a few fruits and I don't eat wheat and soy because of another autoimmune condition. I also have asthma. 

AG: What was your motivation to create your Food Allergy Survival Guide College Edition website?

LR: I decided to make my Food Allergy Survival Guide College Edition website because I felt like teens with food allergies were kind of ignored. There is a lot of support for food allergy parents and young food allergic children, but after elementary school the support kind of ends.

For me, the whole college process was frustrating. During my sophomore and junior year of high school, my parents and I went and looked at six different schools within three hours of home. Some of the schools I did not like and the ones I liked, didn't seem to have the right program, were very competitive or were not in a desired location. The last school we visited was the University of Pittsburgh. I fell in love with it from the moment I toured; they had the academic program I wanted and they were in the perfect location. The only problem was that it was six hours from my house, and at the time my parents were a little nervous about me going far away.

At the beginning of my senior year of high school, I applied and accepted to the University of Pittsburgh before the end of September. I knew that I wanted to go to Pitt and my stubbornness was not going to let my food allergies stop me from going to my dream school.

After the frustration of getting accommodations for my food allergies and spending months trying to learn how to manage my food allergies and other medical conditions on my own, I realized I would have loved to have met someone who had done it before. I would have loved to have had a mentor who could tell me how they did it, and I know that my mom would have loved to have talked to a mom who had sent their child with food allergies off to college. And because of that Food Allergy Survival Guide College Edition (http://foodallergysurvivalguide.weebly.com) was born.

It covers college application to college graduation and everything in-between. It is also ever evolving and we are continuously adding to it so that we can keep it as up to date and as comprehensive as possible. 

  

AG: Who is the Food Allergy Survival Guide College Edition website for?

LR: While it is mostly geared toward food allergic high school and college students, there is also a parents only section and a section for college guidance counselors.

We also have a chapter of the guide that is geared towards newly diagnosed teens, and teens also managing other autoimmune conditions in addition to food allergies. 

AG: What tools and resources did you find most helpful in creating the Food Allergy Survival Guide College Edition website?

LR: I found my mom to be a very useful resource. She is an award-winning writer and she was very good at catching my spelling mistakes and writing content for the guide.

As I was writing this guide, I was simultaneously Co-Chairing a FARE committee of college students and parents that was writing a guide for FARE to put out for teens going to college with food allergies and their parents (the guide should be released soon).

The committee was helpful in coming up with tips for students going to college with food allergies, which I found useful. Most of the content though, has come from my own personal experience and things my family has found to be beneficial.

AG: What would you do differently now that you have been in college since the fall of 2014?

LR: I would worry less about what people thought about my allergies. I graduated from Abington Friends School in Jenkintown, PA. It is a small private Quaker school where everyone knows everyone and everyone is accepted for who they are. All the teachers and staff along with the students knew about my allergies, and it was just part of who I was--no one really cared ore judged me for them, but I was still the food allergy kid.

I went into college with the mindset that I didn't want to be the food allergy kid because I didn't want people to think I was weird or weak. I spent a lot of time the summer before my first semester worrying that I wouldn't find friends as amazing as my Abington Friends School Friends and that people were going to think that my food allergies made me weak and that they wouldn't want to be my friend because of them.

In the first hour of college, I learned that I was highly mistaken. No one really cares about my allergies, and I have found amazing friends who I love and trust to take care of me if I have anaphylactic reaction. 

AG: What are your three top tips for college-bound high schoolers?

LR:

1. Don't be worried about living in a single. When we went to the disabilities services for my apartment accommodation (because my allergies are too hard to accommodate in the dining hall) they told me they could only give me a single because they didn't think it would be safe to be using in mixed-use. For a while I was disappointed I couldn't have a roommate, but honestly I love having a quiet place to study when I need it, and the authority to invite over friends whenever I want without having to worry about bothering my roommate. 

2. Don't choose your college because of your allergies. If you don't go to the school that you love, you are not going to want to be there and college isn't going to be a fun experience. Choose a college and then figure out what accommodations you need to live there and study there safely. At one point, my parents wanted me to go to Temple, which is close to home and while it is a good school, I know I would have spend my entire time wishing I was at Pitt instead.

3. Carry your epinephrine autoinjector. Sure Epi-Pens or Auvi-Qs don't always fit discretely in your little black dress or in your jean pocket, but they can be life saving and the reason that food allergies are often fatal is because epinephrine isn't used fast enough. Even if you haven't had an anaphylactic reaction before, you can never be too safe. A really quick way to loose your parent's trust in your ability to go to college and be independent is to not have your epinephrine on you.

AG: Where can we find you?

LR:  You can find me volunteering as an EMT, doing community service, playing tennis or studying (you have to do a lot of that in college.) As far as social media goes, you can find our guide, Food Allergy Survival Guide-College Edition on Facebook (https://www.facebook.com/foodallergysurvivalguide) and Twitter (https://twitter.com/fasurvivalguide). You can also find me on Facebook (https://www.facebook.com/lily.roth.37) and Twitter (https://twitter.com/lilzforthrilz)

Thank you, Lily!

Lily Roth, used with permission.

Detail: Food Allergy Counseling: Interview: Lily Roth of Food Allergy Survival Guide College Edition

0 Food Allergy Counseling: Family, Holidays and Food Allergies

I read this New York Times opinion piece by Frank Bruni about his Italian American family - On Thanksgiving, an Abundance That's About Much More Than Food - and his Thanksgiving which he likens to “…. a forced march, only a catered one, with prosciutto” and thought, even though my family is not Italian American, anyone with food allergies can relate to the sentiment, especially on Thanksgiving. 

Bruni goes on to say: “We Italian-Americans exalt food because we Italian-Americans exalt family. They’re intertwined. Indistinguishable.”

Many cultures express their love through feeding each other. Ahem, I’m looking at you my Jewish brethren. And when you have severe food allergies and cannot indulge in beloved family recipes, sometimes feathers get ruffled. Or worse, rifts can form.

So how do you initiate a loving conversation with extended family about the holiday season? 

Here’s a handy solution for only $1.50, the family e-chapter from my book Allergic Girl: Adventures in Living Well with Food Allergies.

You can download this chapter, Allergic Girl Family Guide to Food Allergies from Barnes & Noble or Amazon.com’s Kindle Store. 

If you want a more personalized approach, contact me about a short term counseling program today.

Detail: Food Allergy Counseling: Family, Holidays and Food Allergies

0 Food Allergy Counseling: Interview with Tarah Jakubiak, Allergic Traveler

I first met Tarah at a FARE walk years ago when I was promoting my lifestyle guide  Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) (available online or at your local bookstore). Tarah is another adult with food allergies who has create a business that support people with food allergies living their best fullest lives- yay!

Tarah created Allergic Traveler, food allergy chef cards in multiple languages that can be used for dining out as well for your child’s backpacks for when they are away from you or home. From the Allergic Traveler website:

“…what happens when you are traveling, for pleasure or business, and you need to communicate with the waiter that you are allergic to nuts in French? That is the premise behind this Allergic Traveler, LLC… All translations are done by native speakers in order to ensure the accuracy of such an important translation.”

As Tarah says:  “My ‘Allergic Traveler’ card has given me the freedom to see the world and I hope it can do the same for you.”

  

Recently, I had a chance to ask Tarah a few questions about being an adult with food allergies and how she got the idea for her business, Allergic Traveler. Want to read what I said to Tarah? Read more on her blog. 

*** 

Sloane Miller: What’s your personal connection to the food allergy community?

Tarah Jakubiak: I have lived with food allergies my whole life. As a child I was diagnosed with multiple food allergies after being rushed to the hospital for the umpteenth time; I stopped breathing. Eventually I was blood tested and my parents discovered the root of my hospital visits was due to my allergy to eggs, tree nuts, mushrooms, and shellfish.Today my whole list of allergens comprises of eggs, nuts, mushrooms, celery, peanuts, soy, garlic, chicken, pork, corn, shellfish, sesame and I have oral allergy syndrome (OAS) to most fruits.

Miller:  Tarah, tell us about your professional background:

Jakubiak: My background lies in marketing, advertising and sales management. I have spent more than 20 years working for companies to help their business grow. Having an extensive business background and multiple food allergies, I saw a need for our product, and I was completely aware of how to bring it to the market place.

Miller: What does Allergic Traveler do and what was the reason why you created it?

Jakubiak: I have traveled my entire life whether it is for business or pleasure. Around 2010, I went on a Mediterranean cruise. We would be stopping in multiple countries and I needed to be able to communicate my allergies in many languages. I started sketching out some cards. I realized there was a need for this so I created Allergic Traveler to use on my trip.

The reaction I received from testing out my product personally was overwhelming. Waiters actually thanked me for being so prepared. Shopkeepers were able to help me with my groceries. This reaction solidified the need to found Allergic Traveler and in 2011, we launched our online business.

Allergic Traveler produces dietary allergen cards for those in need of communicating their restrictions. Cards are available in English and 17 other languages. Each one is customized. They are available in wallet and luggage format. The luggage format is popular with young kids as they attach them to their back packs while on field trips or sleep overs.

Today people use our cards while eating out, while traveling, while away at college and in many other settings. 

Miller: What is the best piece of advice you have for people newly diagnosed with food allergies?

Jakubiak: To the parent of the food allergic child, I would say, “It will be OK. Trust yourself and your child will be well prepared. There are many obstacles that will be put in your way but take comfort in the fact that there are many more resources, including support, out there today.”

To the child or adult with food allergies, I would say, “Make the best of your situation. Become a great cook and spend some time learning new cuisines. Do not forget to give back to the food allergy community as only you can understand what we really need.”

Miller: What are your interests outside of work? What gives you joy?

Jakubiak:  I love to travel when I am not working. I like to experience a new culture, to get lost in new neighborhoods, to meet people with different customs, to learn about their cuisine, to absorb whatever they are prepared to teach me. And of course my loved ones bring me great happiness. No matter the situation to spend time with a loved one is always a gift and it never lasts long enough.

**

Thank you,Tarah, and Allergic Traveler for all that you do to support us getting out there safely!

Detail: Food Allergy Counseling: Interview with Tarah Jakubiak, Allergic Traveler

0 Food Allergy Counseling: Review of Sarah Wilson, I Quit Sugar

Copyright 2014 Clarkson Potter

I Quit Sugar by Sarah Wilson is not a food allergy related book nor focused on any kind of food allergy issue. 

I Quit Sugar by Sarah Wilson is about cutting out hidden, and not so hidden, sugars from one’s diet. 

Sarah (who has both Graves & Hashimoto diseases, both autoimmune diseases), found that being low to no sugar helped her body and her overall wellness immensely and almost immediately. If that might be you, too, then read on.  


***

I Quit Sugar by Sarah Wilson lays out an 8-week process of eliminating fructose and added sugars from one's diet to recalibrate one body. Sarah gives recipes to help one along with a sugar-free lifestyle quest.

Overall, I really like her attitude of approaching any new diet regime: be gentle and kind to yourself. 

The format is done well with many pop-outs of tidbits of info and bottom line dos and don’ts – easier to follow that way especially as the first third of the book is how her plans works; the second two thirds are recipe driven.

The book is informative but not deep research driven; it’s more lifestyle choices and how these choices affected the author personally. I Quit Sugar by Sarah Wilson is an easy read with some valid points about sugar consumption in America and sugar’s potential affects on the body.

I’m not a huge sugar consumer and not a major processed food consumer. Having said that there are plenty of places that I still cut corners, like buying and using pre-made organic tomato sauce (still filled with fructose) or a cookie every now and then or some food allergy free chocolate. It’s not a perfectly sugar-free diet however, my diet works perfectly for me. And the author also stresses that point (which I like and agree with wholeheartedly): there is no one size fits all diet for health. Do the best that you can with what’s available and what your body needs.

I Quit Sugar by Sarah Wilson has 108 fun, easy recipe ideas, if you know how to cook. This is not a beginner’s guide to cooking cookbook. However, as an experienced cook, I appreciate her “I use the same few ingredients multiple ways so you don't have to go out and buy fancy ingredients” approach. It’s how I cook as well.

It's worth noting the following: 

The recipes are written in a "throw in and bit of this and that" format. If you need more precise instructions, this book may not be for you. 

This recipes are also heavy on the use of tree nuts (including coconuts), eggs and cheese. Proceed accordingly.

By week 4, Sarah's weekly dietary instructions become more focused on feelings around food and social engagements around food; so, it's not a strict "eat this, not that" 8-week diet book.

Excerpt here via her publisher, Clarkson Potter. 

Having said all of that, if you are looking to cut sugars out of your diet, and already know how to cook and throw together meals, this may be a good resource to start that de-sugaring process.

As in all things, any dietary change should be in conjunction with a board certified medical professional who can address any medical needs that may be driving that dietary change.

Detail: Food Allergy Counseling: Review of Sarah Wilson, I Quit Sugar

0 Food Allergy Counseling: Interview: No Nuts Mom Group Founder, Lisa Rutter

I met Lisa in person last year at the EpiPen Blogger Summit where I was a featured speaker (more on that here); however, I had been hearing about her Facebook page for some time as it provides a space for parents of food allergic children to connect and share resources. Recently I had a chance to ask Lisa more about her group, NO NUTS MOM GROUP (NNMG).

***

Allergic Girl: Tell us a little about you, Lisa?

Lisa Rutter, NO NUTS MOM GROUP (NNMG): I live in MI with my husband and my 4 and 6 year old boys.  My 6 year old has food allergies to peanuts and tree nuts. I am a stay at home mother, Founder of NO NUTS MOM GROUP (NNMG) and Co-Leader of a local support group called FACES of Michigan. 

AG: Tell us about why you created NO NUTS MOM GROUP (NNMG)?

NNMG: I started the group as soon as my son was diagnosed at 3 years old. It was a way for both us to connect with others dealing with the same thing. I wanted playmates for my son and I didn't want to have to worry about being around peanuts and nuts at play dates.  Shortly after the group started, I became more actively involved in the food allergy community and as I learned more, I wanted to help more. The group started as just a playgroup, but has now become so much more. 

AG: What is the NO NUTS MOM GROUP mission?

NNMG: The No Nuts Moms Group is a group dedicated to connecting others, educating and raising awareness throughout our communities. We are also a great online support community.

As the Website states: "Welcome to No Nuts Moms Group!  We are a group dedicated to learning, educating and supporting others.  We have 53 peanut and tree nut free groups for all ages.  If you are looking to meet other families that are dealing with life threatening food allergies, please check out our groups tab located at the top of this page.  They are FREE to join!"

AG: What can we look forward to in 2014 from NO NUTS MOM GROUP?

NNMG: We would love to see more groups pop up in other cities. We will continue to raise awareness and connect others dealing with life threatening allergies.

AG: What aspect of NO NUTS MOM GROUP are you most excited about?

NNMG: Connecting and helping other food allergy families. But the group is also not just for peanut tree nut allergic. We are open to all with life threatening food allergies. I don't get paid to do any of this. It is one of the most rewarding jobs I have ever had. I feel very close to so many of these families. It helps me and it helps others and it just feels good.  And I love my family and my son and I know I am making the world a better place for them.

AG: How can we find NO NUTS MOM GROUP online?

NNMG: Website: http://nonutsmomsgroup.weebly.com/
Facebook: https://www.facebook.com/nonutsmomsgroup
Twitter: https://twitter.com/nonutsmomsgroup
Pinterest: http://www.pinterest.com/nonutsmoms/


***
 
Thank you, Lisa of NO NUTS MOM GROUP and every food allergy parent for your tireless work to support your children as they grow into young adults living confidently with food allergies.

Detail: Food Allergy Counseling: Interview: No Nuts Mom Group Founder, Lisa Rutter

0 Food Allergy Counseling: Interview with Eleanor Garrow-Holding: FAACT

Eleanor Garrow-Holding and I have had the pleasure of working together for many years, especially when she worked as the Vice President of Education and Outreach for Food Allergy Research & Education, Inc (FAAN) and when I was a featured speaker for the FAAN conferences (amongst other projects). 

Recently, sensing a need for deeper community engagement and outreach, Eleanor and her team have created the Food Allergy & Anaphylaxis Connection Team (FAACT). I had a chance to get the scoop from Eleanor all about FAACT:

Allergic Girl: Tell us a little about you, Eleanor?

Eleanor Garrow-Holding: I have worked, educated, and advocated in the food allergy community for almost 10 years. I was inspired to start this work after my son, Thomas, was diagnosed with life-threatening food allergies to tree nuts, peanuts, wheat, and sesame; eosinophilic esophagitis (EoE) triggered by milk and wheat; asthma; and environmental allergies. 

After Thomas was diagnosed in 2004, I established a food allergy support group in a southwest Chicago suburb, Parents of Children Having Allergies (POCHA) of Will County, focusing on education and advocacy; chaired the FAAN Walk for Food Allergy in Chicago in 2007 and 2008; was awarded the FAAN Muriel C. Furlong Award for Community Service in 2008; and advocated in the Illinois state legislature on food allergy and EoE issues. Thanks to the efforts of myself and other patient advocates, legislation to ensure insurance coverage for elemental formulas was signed into law in 2007 and legislation establishing food allergy management guidelines for Illinois schools was signed into law in 2009.

I joined the Food Allergy & Anaphylaxis Network™ (FAAN) in 2009 as Vice President of Education and Outreach, where I oversaw educational initiatives, all food allergy conferences, the Teen Summit, Camp TAG (The Allergy Gang), a Teen Advisory Group, support group development, and more. I advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) in Washington, DC, with her son Thomas as part of FAAN’s Kids Congress on Capitol Hill. I also advocated on Capitol Hill for the School Access to Emergency Epinephrine Act. I’ve conducted numerous radio, television, and print interviews on food allergy issues and wrote articles for Allergic Living and Living Without magazines. I presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country on food allergy management in school. I have also educated staff from numerous food industry companies and entertainment venues about food allergies, such as McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.

In 2013, I joined the Cincinnati Center for Eosinophilic Disorders (CCED) as Senior Specialist of Program Management at Cincinnati Children’s Hospital and Medical Center. There I led day-to-day clinical operations, clinical research projects, program development, marketing, and development.

Now, as CEO of the Food Allergy & Anaphylaxis Connection Team (FAACT), I provide leadership, development, and implementation for all of FAACT’s initiatives and programs, including Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that I founded in 2009.


AG: Tell us about why you created FAACT?

EGH: Since my son Thomas was diagnosed with food allergies almost ten years ago, I've been blessed to make connections with families across the country living with food allergies. We helped each other cope with the emotional roller coaster of food allergies, sharing everything from recipes to safety tips and how to deal with food allergies at school. I appreciate so much the support of food allergy groups and advocates nationwide and all the wonderful work they do. I came to realize, however, that there was no way to connect these groups together to share the lessons learned through decades of living with food allergies. That was my "Aha!" moment – and the day I began creating the Food Allergy & Anaphylaxis Connection Team (FAACT).

I wanted to create a place where you can find the information you need right now, the legislative initiatives that will help your family in the future, the truth about your rights and your child’s rights at school, programs for the entire family, and more. I’m thrilled that FAACT can be that place for you and your family – your home and voice for food allergy awareness.


AG: How is FAACT is different from other national food allergy national non-profit organizations?

EGH: FAACT is a national nonprofit focused on education, programs, civil rights advocacy, government relations, awareness, support group development, and more. Providing conferences regionally based throughout the country gives many families the opportunity to attend, learn, and meet others. FAACT is the first organization to focus on civil rights advocacy in schools and have an attorney leading that initiative. The Leadership Team members are all experts in their fields, but also have personal connections to food allergy and anaphylaxis. Everyone has a child/ren with food allergies. FAACT's Board of Directors all have a personal connection and are well known in the community. FAACT has a world-renowned Medical Advisory Board, which is an interdisciplinary board with board-certified allergists, psychiatrist, psychologist, and we will be adding RN's and RD's. Having the psychological, nursing, and nutrition component is very important and an absolute need!

AG: What is the FAACT mission?

EGH: FAACT's mission is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis. FAACT is also your voice for food allergy awareness.


AG: How will FAACT fulfill its mission?

EGH: FAACT will be focusing on many initiatives. Keeping children safe at school, responding to food allergy bullying, dealing with workplace issues, providing school and restaurant education, and offering education and civil right advocacy resources and tools at your finger tips. FAACT has all the facts you need to manage food allergies and stay healthy. FAACT is here to support you in managing your food allergies – today, tomorrow, and into the future.


AG: What can we look forward to in 2014 from FAACT?

EGH: FAACT is offering four food allergy conferences this year in Anaheim, Atlanta, Denver, and Philadelphia. The conferences offer education and support for parents, grandparents, school personnel, caregivers, healthcare professionals, and teens.

There will be a teen conference in Chicago (Date to be determined). The teen conference weekend is all about teens, their siblings, and their parents. The weekend offers an informative program full of fun activities. Teens will learn about managing their food allergies and, more importantly, spend time with peers who have food allergies.

Camp TAG (The Allergy Gang) will be held in Williamstown, NJ the week of July 28 through August 1. Camp TAG provides a safe place for children with food allergies and eosinophilic disorders and their siblings to have fun – with no worries about allergic reactions – and meet other children who share similar experiences. It is a bonding and empowering week for all campers, including parents.

There will be many programs and materials developed this year, so you will have to stay tuned.


AG: What aspect of FAACT are you most excited about?

EGH: I'm most excited about helping all the families and individuals who are affected by living with food allergies. Connecting with them is very important to me and always has been. Knowing that I've helped one family or person means the world to me.


AG: How can we find you online?

EGH:  FAACT Website: www.FoodAllergyAwareness.org

Facebook:
https://www.facebook.com/pages/The-Food-Allergy-Anaphylaxis-Connection-Team/407102649420617

Twitter:
http://www.twitter.com/FAACTnews

LinkedIn:
http://www.linkedin.com/company/faact-food-allergy-&-anaphylaxis-connection-team

YouTube:
http://www.youtube.com/channel/UCGChCwA5FOfa8_0CbQEa0XA

How can we find out more?
Our website, FB page, and Twitter account.
Email Eleanor at Eleanor.Garrow@FoodAllergyAwareness.org
Email FAACT at info@FoodAllergyAwareness.org

***

Thank you Eleanor, can't wait to see more from FAACT in 2014!

Detail: Food Allergy Counseling: Interview with Eleanor Garrow-Holding: FAACT