Food Allergy Counseling

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

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.

Wednesday, February 18, 2015

Food Allergy Counseling: Your Middle School Child and Writing Down their Food Allergy Fears

As I discussed in this earlier post, the Middle School* years are a pivotal age range for kids. It’s the time that they start becoming more independent in many aspects of their lives. It’s a great phase – full of exploration, fun, special skills, deeper friendships and an understanding of their place in the larger world. 

For parents of kids with severe, life threatening food allergies, helping your child become more independent and responsible can have some added challenges. 

One of which is that your Middle School aged child frequently has new and deep concerns, fears and questions about food allergies and their medical diagnosis. A lot of them. These questions are different than a few years ago and they are different than they will be a few years from now; but these questions, if they go unanswered or are answered with half answers, can grow into massive, irrational fears. 

For example, *if* your Middle School aged child has:

--heard and processed half conversations (or even arguments) between you and your spouse about food allergies or their seriousness or their management; 

--picked up pieces from allergist and pediatrician visits but not the full story as they weren’t engaged in the conversation or even really a part of the office visit; 

--if they have been told misinformation by a well-meaning school teacher, who has no clue what they are talking about; 

--if they have read something online from an untrusted source (the definition of a Doctor Google); 

--or perhaps they have done what all kids do: heard one thing and then thought it meant something else because they didn’t have the knowledge or context to process it, they can end up with a lot of myths about food allergies and food allergy risk that they believe are true. And usually they really aren’t.

Your Middle School aged child needs answers to their food allergy fears and questions now in a new and different way. They are able to process complex information in a more dynamic way. So let’s let them get that new information so they can start to identify and separate real food allergy risk from food allergy fear.

Frequently with my Middle School aged food allergy counseling clients, I will ask them to tell me what their fears are and their questions about their food allergies and we write them down together. The general themes I’ve heard concern death, casual contact, how epinephrine works, needles and how to protect themselves. 

Let’s jump into the scariest one for everyone who manages food allergy risk: the possibility of death from an accidental exposure to one’s food allergen. 

A Middle School aged child understands death in a new and deeply profound way, perhaps even existential. The deaths they may have experienced like the death of a loved one, a beloved pet or even a friend or the parent of a friend has a different effect on their lives as a middle schooler than, say, a pre-schooler. Additionally, it is developmentally appropriate for Middle School aged children to start to ask and experience themselves as a human being in the world; even that there is even a larger world that they need to concern themselves with! 

This is an elemental question that Middle School aged children are grappling with and it’s our job to help them grapple.

Of course, as a parent (or a adult loved one), it can be deeply upsetting, difficult and heartbreaking to hear a child talk about their fears about death.

But parents, I urge you to first examine * your * thoughts, fears and understanding of food allergy risk. Children, as you know, are little sponges watching and listening to everything you do and they will mirror your feelings, whether you have expressed them directly or indirectly. If you believe deeply that your little one will grow into a self-sufficient adult with food allergies, they most likely will. If you have deep worries, fears about risk and allergens and managing them (and/or a history of anxiety), and believe there is danger and risk around every corner, your child cannot help but pick up this attitude, too, and mirror your worries and fears. 

Parents, maybe you still have questions about food allergy risk, diagnosis, definition or your anaphylaxis action plan? Get medical clarity, work with a therapist, talk to your partner about your concerns so you can help your child navigate this next developmental phase which is the beginning of how to be in the world and of the world (my favorite quote from the movie Sabrina.)

By the Middle School years, it is time for honest age-appropriate talk about real food allergy risk versus food allergy fear. And, as a family, this needs to happen together, ideally. 

Allow your child the space to express their fears about food allergies in words, drawing and in play.

Have them write down their questions about food allergies or help form their fears into actionable questions.

The next step is to take those questions to your trusted local allergist to get real answers which will help them learn how identify and separate real food allergy risk from food allergy fear.

My next post will cover this topic.

***
Here are parts one and three 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.

Monday, February 16, 2015

Recipe: Nut-Free, Gluten-Free, Easy Granola

Breakfast this week: yogurt, granola, bananas and more maple syrup. So yum!




 “The more prepared I am, I the more spontaneous I can be.”

I said that during a session with a food allergy counseling client last week and it is so true for those of us who have severe life threatening food allergies.

Running around town like I do, I frequently need to eat a snack on the go.  Anything safe that I can grab and go and keep in my pocket or purse that doesn’t spoil is great.

Homemade granola has been my go-to snack since I saw this Mark Bittman recipe in 2009. I didn’t know granola could be made so easily and so well. I simplified the recipe further to four ingredients. I make large batches, and then take small snack packs with me so I always have a safe snack and can be spontaneous!

###

Easy Granola Recipe

4 cups of Rolled Oats
½ cup Maple Syrup
A few dashes of cinnamon
A dash of kosher salt

Preheat your oven to 350 degrees. Line a large and deep baking pan with parchment paper (makes clean up incredibly easy). In a large bowl, combine all ingredients and mix until each oat is coated with maple syrup. Taste. If the mixture needs more cinnamon, add one more dash. Bake in the oven, stirring the oats and turning the pan every ten minutes. The oats will be done when they sound dryer as you stir, smell fragrant and look brown toasty, about 25 minutes. Let the mixture cool thoroughly, place in an air tight container and store. Since they don’t have any oil they should not go rancid quickly; however mine haven’t ever lasted more than a month, because I gobbled them down.


Enjoy!

Friday, February 13, 2015

FDA Consumer Update: Dark Chocolate May Not Be Milk Free


From the FDA Consumer Updates site, a warning about dark chocolate; essentially that it may still contain traces of milk.

“If you or someone in your household is allergic to milk, take heed: a recent study by the Food and Drug Administration (FDA) tested 100 dark chocolate products and found that many contained milk. More importantly, you can’t always tell that’s the case simply by reading the food label….Consumers who are allergic to milk should be aware that a high proportion of tested dark chocolates contained milk.”

The only thing missing from this  FDA Consumer Updates site article that would be the most useful to the milk allergic community is what brands were tested and found to have traces of milk when they made claims of milk-free, vegan and/or allergen-free.

Stay safe everyone!