Food Allergy Counseling

Food Allergy Counseling
Sloane Miller, MFA, MSW, LMSW, Food Allergy Counselor Speaking At Mylan Specialty / EpiPen Event (© Noel Malcolm 2013)

Thursday, May 07, 2015

Interview: Jerome “The Bus” Bettis, Auvi-Q


Recently I was offered an opportunity to interview Jerome “the Bus” Bettis – NFL Hall of Famer for National Allergy & Asthma Awareness Month as he traveled to Washington D.C., on behalf of Sanofi US, (makers of Auvi-Q) with the Allergy & Asthma Network (now AAN, formerly AANMA), to share issues and initiatives with members of Congress and staffers on behalf of people with anaphylaxis and related conditions. 

From Sanofi US: Jerome, and Sanofi US, the makers of Auvi-Q® (epinephrine injection, USP), are supporting this event and working with AAN to raise awareness about anaphylaxis, advocate for access to emergency epinephrine and to create awareness of Auvi-Q. This is Jerome’s first time going to The Hill to advocate for severe allergies and he is very excited to help in educating people. The event, now in its 18th year will take place May 5 through 8, 2015 as part of Allergy & Asthma Network’s 30th anniversary celebration.

Jerome was diagnosed with a severe allergy to shellfish more than 27 years ago when he was 14 years old. (Jerome talks about that in Coping magazine.As I did some background reading on Jerome, I realized we are in the same generation. He was, like me, most likely was not given any kind of prescription for an epinephrine autoinjector upon diagnosis. Jerome confirmed this when we spoke, he didn't know epinephrine autoinjectors were even available. In fact Jerome says, he did not get any autoinjector device until the Auvi-Q

NB: It was not standard practice until very recently. So those of us diagnosed in the 1970s, 1980s and even the 1990s simply did not have epinephrine autoinjectors. We were told: “avoid your allergen, take an antihistamine and get to a hospital”. That was it. I talk about this more in my book: Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011).

The landscape of food allergies has radically changed in that one aspect since were children: epinephrine autoinjectors are readily available and are widely prescribed. In fact epinephrine is now considered the most important first line of defense in an anaphylactic event. 

***

Allergic Girl: How did you cope, knowing you were shellfish allergic but had no emergency medication to carry with you?

Jerome Bettis: I avoided all seafood and fish. I was so scared that I would have a reaction that I locked myself away. That was my main coping mechanism because I didn't have any type of epinephrine autoinjector. And I was really careful. The only thought was to get antihistamine if I ran into trouble, way into my adult years and I just stayed away from fish.

AG: How was the experience of getting your first Auvi-Q?

JB: Exhilarating. It opened me up to not be scared and try dishes because before I just wouldn't try anything. Now that I have the Auvi-Q with me I’m never concerned. It takes the paranoia away. In the past, if I had a problem I would think: “where is nearest drugstore in case I need an antihistamine?” Now with the Auvi-Q I feel more at ease with eating and dining out on the road.

AG: What motivational words would you have for athletic teens who have been recently diagnosed with food allergies, like you were at 14, and feeling nervous about “getting back into the game?”

JB: Don’t be afraid to be different, it’s okay. Don’t be afraid to answer the question about who you are, and that you have food allergies. The more people you tell about your food allergies, well, if they care about you they will care enough to know about you. I have friends who watch out for my shellfish allergy. They warn me about dishes before I even have a look at the menu.

Another thing. Having food allergies taught me that I needed to be conscious and careful of everything that I am putting into my body. From a really young age. And that was really helpful and a great lifelong skill to know.

AG: Having a life threatening experience, like anaphylaxis from food allergies or an uncontrolled asthma episode, is the catalyst for many people, young and old, to make life changes and take their health more seriously. (Jerome talks about a severe asthma attack during a 1997 football game and how that was a game changer for him.) What would you say to anyone right now about how and why they should get a jump on their health?
  
JB: For me, that situation was eye opening. I told myself that I had to become educated. That led me on the course on where I am today. I wanted to be proactive, be informed and create awareness around food allergies.  Because I did not know there were options available for years and years like Auvi-Q. There are now options for all of us with food allergies. You don't have to be like me not knowing that these medicines are available.

AG: What might you say, man to man, to other young men with food allergies about how they can take care of both their health and their independence?

JB: Men, we think we’re invincible or immune – that anaphylaxis will never happen to me. I would tell any young man: This is life threatening. You need to have an action plan. If you don’t have a plan you will be in serious trouble if you have anaphylaxis. You’re prepared about everything else, you need to prepare for this.

 I have a five point plan:
--Avoid the allergen.
--Have two epinephrine autoinjector devices.
--make sure that people that are with you, that they know that you are allergic. And that they know how to help you.
-Practice with an epinephrine autoinjector trainer.
--If you use your epinephrine autoinjector, that is not the end of situation. You need to seek emergency medical attention.           

AG:  Here’s a question from a food allergy mother via my Allergic Girl Facebook page: What would you say to young kids that think their dreams are limited because of their food allergy? 

JB: I would say that your dreams do not have to be dashed because of food allergies. You can live life to the fullest as long as you have an anaphylaxis plan.

AG: Here’s another question from a food allergy mother via my Allergic Girl Facebook page: How to you handle traveling?

JB: I have two Auvi-Q devices with me at all times that allows me to travel without the fear of anaphylaxis. Be diligent about your food allergies and avoid a place that has your allergens; for me that’s a seafood restaurant. Anytime time I travel I tell everyone around me about my food allergy. But as you cannot be 100 certain have your two Auvi-Q devices with you at all times.

Here's Jerome playbook with many helpful hints and lifestyle strategies about stay safe and having fun while managing risk.

Auvi-Q also offers a $0 co-pay for their devices. Go to their website for more information.

Thank you, Jerome and Auvi-Q!


Wednesday, May 06, 2015

Please Don't Pass The Nuts: One of Healthline’s Best Allergy Blogs of 2015



Healthline Best Allergy Blogs of 2015



What a lovely honor to be named one of 21 of the best allergy blogs of 2015 by Healthline

I'm in the excellent company of friends, colleagues, fellow advocates and bloggers. 

Check us all out.

Wednesday, April 22, 2015

Ready, Set, Success! Telesummit, Dr Liz Lasky


What if there was an easy way to:

Figure out what you want
Make that vision crystal clear
Tackle the barriers
Act on that vision
Live the life of your dreams

I am one of 21 experts that my friend and colleague Dr. Liz Lasky, LCSW, PhD recorded in her telesummit: “Ready, Set, Success!” beaming out May 1, 2015.


Click here to register for “Ready, Set, Success!” and start getting your success on right now!  
 
 

Wednesday, March 25, 2015

Interview: Manischewitz, Gluten-Free Line, 2015

I’ve been using and eating Manischewitz products during the Jewish holidays my entire life and I’ve had food allergies (tree nuts & fish) my entire life; I’ve never had an issue. Now, I have some insights on how Manischewitz keeps everything nicely separated, even as they add a gluten-free line and, of course, Kosher.

Last week, during the first ever #Maniexp at Chelsea Market here in New York City, I had an opportunity to talk with CMO David Rossi about Manischewitz, their new gluten-free product line roll outs for Passover and how they keep everything separated.


Oh you didn’t know? Yes, over the last few years Manischewitz has begun to roll out some gluten-free products, one of which is has been something of a Holy Grail (pardon the mixed religious metaphors) in the gluten-free world of foods: matzoh, the “bread” Jewish people eat during the feast of Passover. And as Passover is around the corner, your local stores should have the new gluten-free line of goodies stocked up, including two different kinds of matzoh-types. 

***

Allergic Girl: Talk to us about your new gluten-free line of products? Why did you create them?

David Rossi: Manischewitz is known for being in the gluten business but it didn't go unnoticed that gluten-free requests and gluten-free products were starting to pop up in the marketplace. Talking to consumers, we found that more had celiac, allergies or a preference for GF. As our job is to find out what consumer is looking for and try to meet that need, we thought it was time for this kind of product.”

AG: What is the timeline of when you started to roll out gluten-free products?

DR: “Our first products were gluten-free noodles for Passover three years ago. 
Then cake mixes that were gluten-free. Then plain matzoh launched two years ago.
Flavored matzoh just launched this year as well as a gluten-free matzoh ball mix.” 

(You can find the whole list of their products here on their website Manischewitz.
Double click on "products" bar to get a listing to sort by allergen.)

AG: Manischewitz uses GFco group to get certified; the Manischewitz standard is 10 parts per million (the FDA standards is 20 ppm). Why are you using GFco as your gluten-free certifier? 

DR: "We wanted to have stricter standards than what the FDA requires and we wanted third party verification."

AG: How does your facility segregate ingredients and/or allergens?

DR: "We have four sections in our 125,000 square foot facility in Newark, New Jersey. Each section is closed off by walls. Generally speaking the sections are: Wet, fish – all liquids, soups, sauces.
 Mixes, meals – dry powdered mixes, too.
 Crackers & matzoh. And the last room are cookies that have nuts."

(Manischewitz has a 600 product line, some products are made offsite that have nuts as well and that is stated on the label.)

AG: So you use GFco group to certify your gluten-free line. Do you send out any other products for third party allergen testing?

DR: “No, we don't test for other allergens. We do a full clean up in between all products. That’s not just sweeping floors or a rinse. On most equipment, say, making matzoh, we clean out all of the parts of machine, tubing, running belts, ovens; cleaning all bands or anything that comes into contact for ingredients. Every part of the machine is cleaned to the highest order possible.  We get certification from vendors as to what ingredients are being sent to us. We utilize GMP (good manufacturing practices) and that gets us 90 percent of the way to be able to make allergy friendly processes. Remember: Rabbis and keeping Kosher is part of our food manufacturing process. We've always had great record keeping, tracking and are used to be supervised.”

(Here’s more about their Kosher certifier: https://oukosher.org/)

AG: Any additional thoughts?

DR: “For those of you with special dietary needs, I’d suggest checking out the Kosher section of market as we have a lot of products that may meet your needs. Manischewitz is about segregation of ingredients, being watched by third parties (Koshering bodies and Rabbis) and tracking ingredients – for us this is comes easily. It’s what we’ve been doing since 1888. Remember: Parve is Hebrew for neutral – means not dairy nor meat and supervised by Kosher authorities.  Ninety-five percent of the 600 products that Manischewitz make are parve. And there are no dairy products in the entire Manischewitz facility."

(This is major news: there are no dairy products in the entire Manischewitz facility. They have dairy items in the Manischewitz line but they are made by third party. Not even packaged in the Manischewitz facility. For further questions use this link http://manischewitz.com/contact-us/ - they'd love to hear from you!)

***

Thank you, David and Manischewitz, exciting news!


Wednesday, March 18, 2015

Recipe: Fudge, Food Allergen Free

Last weekend, I had brunch with my besties from grade school. My bestie bestie since first grade, Aimee, has two little ones; her seven year old is peanut allergic. When we get together, we all make food that is safe for everyone else. It’s joyous. 

A few years ago, I made fudge from a recipes in Divvies cookbook (you can find the book here). The girls, and their dad, never forgot it. So this brunch there was a request that I make the marshmallow fudge. Which of course I honored. Marshmallows and chocolate are two of my favorite things together and apparently everyone else's. 




The Divvies this recipe is beyond easy. I’ve made it with lactose-free dairy and I’ve made it completely dairy-free as per the recipe. I’ve used Divvies chocolate chips and I’ve used Enjoy Life Mega Chunks. And it all turns out perfectly.

Here is Divvies original recipe.
From The Divvies Bakery Cookbook by Lori Sandler. Copyright (c) 2010 by the author and reprinted by permission of St. Martin's Press, LLC.

I made the recipe as stated. Lined my 9x9 pan with organic parchment paper from If You Care and then marshmallows from Jet Puffed. I poured the fudge on top. Let it cool and then sliced. Here are some luscious cross-section pictures of my end result. 







Use this recipe as a base and make variations. Mint. Yes. Oreos? Yes. Bacon. Oh yes! Candied ginger? Yes. Orange zest? Oh yes! It’s fine for Passover, no flour. It’s delicious for Easter. And it’s a fun cooking activity to do with your little ones.

Thank you Divvies for the inspiration. Now, go get cooking! 

Friday, March 13, 2015

The Jewish Museum: “Repetition And Difference”, March 2015

I had an opportunity to visit the upcoming exhibit "Repetition And Difference" opening March 13, 2015 at The Jewish MuseumIn my discussion with one of the curators, Susan L. Braunstein, Henry J. Leir Curator, she said: 

“Repetition in art can often be seen as mundane and static, even cookie cutter. This exhibit is trying to show that there is difference if you know where to look.”

And look we did, walking through four rooms of variations, deviations, conformity and repetitions.


Tyrian shekels


Yarmulkes through the ages

Ancient feminine figures


Havdalah silver spice containers

All of these objects were created by artisans to be the same - menorahs, mezuzahs, yarmulkes, havdalah containers - items every Jewish family needed in the ancient world (and observant Jews still need today). Human nature has an urge to create perfection and also, to have the exact same thing that the proverbial Jones's have. But of course there are deviations, imperfections - we could never clone perfectly. (Think Multiplicity with Michael Keaton.) 

Broadly speaking, automation, starting in the 1800s, strove to eliminate those human variations and create identical products for the masses - think Model TAutomation had a similar effect on art - think Bauhaus and later, Andy Warhol.

But, as we all know, imperfections in our automated world are everywhere: sometimes celebrated (“Look at the mistake on my Warhol lithograph! It’s ten times more valuable now!”); sometimes super annoying (“My iPad is a lemon out of the box! Can't they make these things right?”). 

As a culture, we seem to flip flop on celebrating uniqueness and, in equal measure, striving for a conformity to a norm or for non-existent perfection. 

I'm in the celebrate what is unique camp. I'm in the there is no norm camp. I'm in let your freak flag fly camp.

As a life coach and food allergy counselor, both of which I regard as my art, part of my job is helping my clients come to terms with uniqueness and sameness as people who happen to be diagnosed with severe life threatening food allergies. 

Another example: as a public speaker about lifestyle and managing severe life-threatening food allergies, I may be giving the “same” presentation but it’s never the “same”. Even if it’s a power point deck I’ve used before, there is always deviation in how my core message (see below) is delivered based on a myriad of variables both concrete and abstract: what’s the weather, what did I have for breakfast, how am I feeling that day; do I have new, compelling client-derived anecdotes that will shed new light on an example or a new experiential exercise to drive home a poignant point; what does this particular audience need on this day and what are their reactions in the moment? 

As a social worker, counselor, writer and speaker, my messaging is always consistent around creating food allergy confidence: 


  • Understand your food allergy diagnosis, 
  • Communicate your food allergy diagnosis, 
  • Form positive and supportive relationships around your food allergy diagnosis.


But the delivery -- that is the art. In my art, there is repetition and there is deviation; and they are both valuable and beautiful.

***

You can check out the upcoming exhibit 
"Repetition And Difference" 
Opening March 13, 2015 
The Jewish Museum
1109 5th Ave at 92nd St

New York, NY 10128

Monday, March 09, 2015

Food Allergy Counseling: Your Middle School Aged Child and Talking to the Allergist


If you’re child was diagnosed with severe life threatening food allergies as an infant, most likely they’ve been going to allergist appointments for years. Also most likely, they haven’t been that involved with the appointment beyond saying yes or no when the allergist asks them a question. And that’s fairly regular.  How often do you proactively ask questions of doctors, e.g. what will these test tell us, what are the next steps, what do my symptoms mean, how can I proactively protect myself, etc.? And more to the point, how often do your children ask questions of their allergist or their medical professional? I’d hazard a guess that it’s not often.

As a food allergy counselor, I believe strongly in giving children information in an age appropriate way so they can integrate their food allergy diagnosis into their sense of self and become independent, self-aware adults with full, fun lives. An important part of that process is having them be involved in and take ownership over their food allergy diagnosis. Children need the medical facts to begin that process.

I cover the doctor patient relationship in a chapter in my book, Allergic Girl: Adventures in Living Well with Food Allergies (Wiley, 2011) and how to create a TEAM YOU with your medical team, as an adult. I’m suggesting you go a step further and encourage your middle school aged child* to engage their medical health professional team directly. 

It’s a game changer for you, your child, your family’s understanding food allergy and mainly, your understanding of how your child understands food allergy. 

An anxious child, one that is fearful of food allergy monsters, needs clarification of their food allergy diagnosis; how to identify food allergy symptoms and what they mean; to explore their anaphylaxis action plan and how and when to enact it; and to go deeper into risk management strategies. All with an eye to help them understand the real risks and the irrational fears and to learn how to separate those thoughts in their minds and in their behaviors.

Some ways to start this process will be encouraging your middle school aged child to ask questions of their board certified medical healthcare provider to get the real facts about food allergy as it relates to their diagnosis. My suggestions for how this process might look are: 

1. Make an appointment with your trusted board certified medical provider. Ask for a “consultation”. Tell them that your child has some questions about their food allergy diagnosis. Ask them if they would like these questions emailed ahead of the appointment. If they say yes, send them.

2. Ideally, the whole family would attend this consultation so everyone can hear the same messaging at the same time and underscore a consistent message to your child after the appointment.

3. Prepare for this appointment by having a conversation, or series of conversations, at home before your appointment. Ask your child about their food allergy fears. Write down a list together. While creating this list do your best to *just listen*. Many of your child’s fears will be implausible, irrational and make no logical sense and that’s why they’re fears, not truths. Do your best just listen. Without judgment. And be their scribe. These are their fears and they need to be heard.

4. My hope is they feel empowered to ask the scary questions, the ones that may be keeping them up at night, stopping them from engaging with friends or in sports or trusting your cooking. If they feel shy or uncertain, make sure those get questions asked in some form.

5. Help your child organize their fear list as many questions will be repeats. Refine the list to the must ask questions, the ones that are really troubling them. Bring this list with you to your allergist appointment. 

6. Encourage your child to ask the questions directly. Pediatric allergists (and pediatricians, in general) usually love when kids get involved and ask questions. 

7. Either have your child write down the answers or you record the answers. Ask the allergist how you may follow up with additional concerns or questions (via phone, email or appointment).

8. When you get home, make a copy of the Q&A. Keep one for your records. Keep a copy for your child’s special use. Ask them where you should put it so they can read it when they feel nervous or forget the answers. Many times I’ll suggest that food allergy counseling clients paste a copy in their child’s room, a reminder of the answers to their questions. It can become a fear versus reality cheat sheet. 

9. Let the information sink in. It will sink in over hours, days, weeks. Let it. 

The point of this whole process is to empower your child with real food allergy information so they can begin to separate their fears from reality. 

And that’s my next blog topic, the final in this series: helping your child separate food allergy worry from healthy food allergy vigilance.

***

Here are parts one and two of this blog series on middle school aged children and anxiety around food allergies.

Here's an excellent post about anxiety, generally speaking, in children, by Karen Young.

***

*I'm using Middle School aged children to represent the middle school years 8-12.

NB: When fears are not managed, children can suffer or withdraw. If you witness troubling behaviors in your child, please have them evaluated by a local child psychologist, social worker or psychiatrist as well as your allergist and your pediatrician.

Friday, March 06, 2015

Food Allergy Counseling: Bullies, Friends & Food Allergies

At last Sunday’s FARE event in Westchester, I was talking about the challenges of independence and food allergies with the teen group, ages 12 and up.

(Talking with teens, FARE Westchester event, 2015. Used with permission)
A seventh grader told us a story about being bullied by some eighth graders about the epinephrine autoinjector pack he used to wear around his waist (now he carries his autoinjectors in his backpack).

“So,” I asked. “Were these eight graders targeting you because of food allergies or because they were just mean eighth graders?”

“Just mean eighth graders. And my best friend stepped up and told them to back off and they did.”

It’s an excellent story that illustrates two very important points that I explored with the teens.

Mean kids exist. And it doesn’t change when you get older. My exact quote was: “I wish I could tell you that when you get older, everyone is nicey nice. But I can’t; mean adults exist, too. Bullies are everywhere, at school, at work, at college – everywhere. And we all have to learn how to stand up and advocate for ourselves. This isn’t simply about food allergies; it’s about navigating the larger world. And the sooner you and your family talk through ways to do this that work for you right now, the better.”

Point two: best friends exist in the world, too. They are your allies, your safety nets; they stick up for you when you feel you can’t, they protect you when you feel down. And you protect them in turn. The sooner you and your family identify those friends who are non-judgmental, kind, open and have your backs and partner with them, also the better.

Every teen in the room identified that they had safe besties who had their backs, some who even advocated on their behalf.

And this seventh grader's story illustrated perfectly how to frame the conversation: when we talk about bullies, we must talk about not merely who is trying to kick you down but who is there to lift you up. 

What I as a food allergy counselor suggest you can do: help your children identify the hallmark behavioral characteristics of the meanies and the benchmarks of the safeties. It will be a skill they will use for the rest of their lives.

Monday, March 02, 2015

Food Allergy Counseling: Food Allergy Resources in Spanish


Here are two excellent, reliable resources in Spanish. Please spread them far and wide!

Food Allergy Research & Education has their anaphylaxis action plans in Spanish and English. You can download these free here.

AllergyHome.org has their Living Confidently With Food Allergy handbook in Spanish as well. Here’s the link and here more information about their guide from the AllergyHome.org website:

"Living Confidently With Food Allergy is a handbook created to get needed information to all that are managing a food allergy. It was designed to give parents the tools they need to keep kids safe while addressing their emotional needs. The handbook was the result of a two year North American collaboration lead by Anaphylaxis Canada. This free, easy to understand resource was written by Dr. Michael Pistiner, Dr. Jennifer LeBovidge and the Anaphylaxis Canada team (Laura Bantock RN, Lauren James, Laurie Harada).  It was reviewed by over two dozen American and Canadian experts."

Tuesday, February 24, 2015

Chipotle, Cumin Recall 2015

I dine at Chipotle Mexican Grill multiple times a week here in New York City and when I travel. It’s delicious, the food is made consciously and humanely and best part: their food does not contain my allergens, tree nuts and fish (more of Chipotle Mexican Grill's allergen information here).

So when the recent cumin recall hit, I was a little nervous. Would this affect the cumin-heavy menu of my beloved Chipotle Mexican Grill? (More on the cumin recall here from Allergic Living magazine.) 

I wrote to Chipotle Mexican Grill directly and at first they said this (reprinted with permission of Chipotle Mexican Grill):

“…I can tell you with complete confidence that our cumin is not in any way affected by this recall. You can definitely eat our restaurants with peace of mind!”

In a second email, I asked for clarification. Chipotle Mexican Grill responded:

“There was only one plant that this affected and this is not where we
 purchase our cumin. Our cumin is whole and we grind it ourselves in our
distribution center. We have frequent audits so we can make sure that
everything is safe for you.”

So there you have it fellow food allergic Chipotle Mexican Grill lovers. Dine on with cumin confidence. 

Any further questions, contact Chipotle directly.

PS Chipotle Mexican Grill was number one in allergy friendliness according to a recent Allergy Eats poll. I concur.