author of Feeding Eden

Food Allergy Blogger Conference Part I: The Moment of Obligation

I believe a game-changing food allergy event will happen this November 2013 in Las Vegas. It's called FABC Food Allergy Blogger Conference. Jenny Sprague, food allergy advocate (see her resource site Multiple Food Allergy Help,) mother and my new role model is the originator of FABC. How is FABC different from previous FARE conferences and events? FAB represents the first time that our food allergy community will gather in mutual support without affiliation or obligation. Yes, some attendees may participate by walking in the Las Vegas FARE Walk, yes we will educate ourselves on the latest food allergy medical advances and yes we will bond over the commonalities in our challenges. But we will also have an opportunity, as individuals, to enrich our unique forms of food allergy advocacy by sharing what we do and how we do it. We will match faces to names and have generous time to truly connect as people, parents, doctors, researchers, writers, CEO's, chefs, bakers, musicians, and more.

Jenny Sprague has envisioned multi-faceted, multi-dimensional event with speakers, panels, fun and safe food. (More specifics will follow in future posts.) As someone particularly daunted by event planning of any kind, I was facinated by Jenny's "moment of obligation" - - the steps leading up to her decision to take on this incredible task instead of waiting and wishing that someone else could make it happen. I asked and was planning to paraphrase her answer. But after reading her honest account I've decided that her rendition reflects both Jenny's infectious courage and our shared need for personal connection. According to Jenny the story unfolds roughly like this:

I went to BlogHer in NYC last August, and Loved it, but the whole time I felt like I wanted THAT experience but with all my food allergy peeps! Then we went to the Sanofi summit, and shortly after that I went to the Mylan summit. The culmination of these events, getting to meet some of the people I have followed for years, and now come to call friends, inspired the idea. I hinted to Sanofi and to Mylan that we needed these educational summits- but for everyone- [neither took the bait]

The night the Mylan summit ended, in NYC, in February, Caroline Moassessi and I dined together. It was during that meal I shared my idea about a large food allergy blogger conference. She thought this was a really good idea, and became excited as we discussed the idea and potential. She said "You should DO this!" Which until that night had NEVER occurred to me. I kind of laughed it off, but the seed had been planted.

A few days later I shared the idea with Elizabeth Goldenberg, with the idea that she is smart, and level headed, and would tell me its a foolish idea- but she didn't! She too loved the idea. I then spoke to Colette Martin, expecting her to tell me it was a pipe dream- but SHE didn't! Each person Loved the idea, the desire for us all to come together, to learn, share, hug, meet!  I also brought the idea initially to Elisa Camahort-Page, a co-founder of BlogHer to see if they had interest, She told me they were booked for this year, but she generously offered to be an adviser and has been generous in her guidance and help! SO with that, the dream became my project! 

"Project" indeed. Jenny has embarked with the purest of motives. To me, the FABC conference is not about showcasing ourselves as much as it is about emulating the values set forth from Jenny's conception: What can I do that needs to happen? More to come on this undertaking and it's implications for progress and change in our growing food allergy community...

 

 

More Regulation Issued from USDA’s Food Safety and Inspection Service

I'm feeling like we can't have enough attention drawn to food labeling regulation. The US food industry is such vast maze of supply and demand that it's infrastructure lends itself to miscommunication and mishap. For the full article click HERE

“All you need is love but a little (Pascha) chocolate now and then doesn’t hurt”

photo-2Charles M. Schulz is known for his famous "Peanuts" cartoons, an irrelevant word play for my purposes here. He also made a very wise statement about chocolate.  Die-hard "chocoholics" will have you believe that chocolate is an essential nutrient. Yet, living with food allergies has taught me that as long as a child is emotionally and physically nourished, they really won't feel unduly denied by their inability to eat particular food. At least not often.

So what about chocolate feels like a deal breaker for those food allergies? Well, Americans love their Hershey's bars and our M&M's, our Toll House Cookies, and our extra fudgy brownies. And whether it's because our factory equipment is riddled with nuts and dairy or because the majority of children seem to prefer their solid chocolate milky and a tad bland, we food allergic types lack a widely available big industry chocolate. For years I've relied two terrific allergen safe chocolate sources: Divvies and Enjoy Life Foods. And both companies make chocolate bars and chips. Their first 3 ingredients is: cane juice or sugar, chocolate liquor, cocoa butter.

And then I found Pascha Chocolate. My other half sent me a link to their site someone had sent to him, knowing, as most friends do that we are a food allergy family. Pascha is "free from peanuts, nuts, soy, eggs, wheat and gluten." Immediately I sensed something new. The first 3 ingredients in all varieties of Pascha chocolate bars are: organic sugar, organic cocoa mass, organic cocoa butter. And that subtle substitution of cocoa mass for chocolate liquor may be one reason that they are by far the most Grown Up allergen safe chocolate bar I've ever tasted.

My son Eden and I tried the basic varieties of Pascha chocolate bar in varying strengths of cacao mass. The 55% was Eden's favorite. It was the sweetest and since he is ten years old it was obvious to me why. However, the 70% bar was a lovely balance of winey and bitter honeyed smoothness. And the 85% bar was abrasive, rich and yet feathery in aftertaste. Pashca bars are contenders in another league of artisinal chocolate; the stuff of foodies, pastry chefs and yes - chocoholics.

I melted a few squares of the 55% on Eden's sourdough bread and the contrast was stunning. I whisked a melted square of the 85% bar into a cup of steamed oatmilk with cinnamon and dash of agave and again, best allergen safe hot cocoa ever. The 70% bar was pretty much eaten within a few days. And that stretch took discipline.

I will soon order the 55% bars with chocolate nibs and with golden berries. If you are reading this and you have food allergies, I suggest you do the same. Can't hurt.

 

Jerome Bettis on Food Allergies and …Temptation

"We gain the strength of the temptation we resist" - Ralph Waldo Emerson

I don't follow football. But when I learned that Jerome Bettis, football legend, is also a food allergy spokesperson and role model, I learned fast: Jerome Bettis, former Pittsburgh Steelers Running Back is viewed as of the best all-time running backs in NFL history. He was also the recepient of the Walter Payton Man of the Year Award in 2001, and is expected to be inducted into the Hall of Fame when he becomes eligible. As my daughter says, "Woah mom."

In time for National Allergy & Asthma Awareness this Month, and with Sanofi US, Jerome introduced The Severe Allergy & Anaphylaxis Playbook – a collection of tips to help educate people living with severe allergies, and their friends and family, about avoiding allergens and being prepared in case of an emergency. Bettis, who is severely allergic to shellfish, is encouraging others impacted by severe allergies to download the Playbook HERE.

I had the opportunity to learn more about Jerome's food allergic history during an interview. He went into anaphylaxis when he was teen after eating shrimp fried rice. Since that time he's had to contend with both lifelong asthma and a shellfish allergy. But before eating that fateful Chinese dish, Jerome loved shrimp. I didn't know that when I asked him about TEMPTATION. What I did know is that there are times when even the most diligent food allergic kids and adults truly long to eat, despite the dangers. Here is a video clip of Jerome Bettis talking about overcoming his appetites: Click THIS LINK to play...

 

Mothers Day with a Food Allergy Veteran: Meet Colette Martin of Learning To Bake Allergen Free

Learning to Bake Allergen-Free.Cover

My kitchen shelves hold almost every allergy friendly cookbook known to man. But Learning to Bake Allergen Free by Colette Martin is one of the most instructive, specific and foolproof for me . Let's face it: We allergy moms are dealing with a new medium when we try to fiddle our way to batch of breakfast muffins or a decadent chocolate mousse. And that's why I love Colette's book. She doesn't simply share the fruits of her labor - the  stellar recipes she developed over the years of baking for her son. In her book, Colette teaches her readers concepts and methodologies of allergen-free baking and empowers us should we want to adapt or create new baked goods, based on different food restrictions. As a Veteran Food Allergy Mom, Colette understands that feeding our families is a long term proposition.  The old adage comes to mind: "Give a man a fish and you feed him for aday. Teach a man to fish and you feed him for a lifetime."

Q: How long have you been managing food allergies? Which allergens does your family avoid?

A: We’ve been managing food allergies for more than a decade. Because my son didn’t have the most typical food allergy symptoms, he was ten before we discovered his first and most severe food allergy – milk. It took a combination of skin biopsies (Patrick developed a severe rash on his palms during a summer where he ate peanuts by the handful), endoscopies, and blood tests to put the whole story together. By the end of 2001 we had determined that he was also allergic to wheat, eggs, soy, and peanuts.

In the beginning I was focused on eliminating those foods just for my son – which often meant preparing separate dishes. Over time my approach changed. I realized that my son was feeling left out outside of the home and wanted him to be able to eat freely at home. Today my goal is to make meals that everyone can share safely.

Q: What was the hardest thing for you and your family in making the adjustment to eat differently?

A: Initially, the hardest task was finding foods we could eat. In 2001 our pantry was chock full of processed foods that contained wheat, dairy, and soy, and as busy working parents, dinners were usually thrown together quickly. Take-out pizza and Chinese food were no longer options, and we had to switch to gluten-free pasta.

But the hardest thing was dealing with breakfast and lunch. Patrick usually rolled out of bed seconds before the bus went by, so breakfast had to be grab and go. He was playing sports after school and needed a lot of calories to get him through the day. He would fill a large grocery bag with Gatorade, fruit, and potato chips to take to school to get him through the day. Even with the bounty of gluten-free and dairy-free off-the-shelf foods we can now find, there are very few breads made without eggs; when we did find one he could eat, he would add two roast beef sandwiches (no mayo) to his grocery bag lunch for school – and he’d make one for the road. Whatever safe foods I did bring home from the grocery store disappeared in seconds. And, like most hungry growing boys, he just never seemed to have enough food to eat!

Q: Was it that lack of available food options that brought you to a baking book?

A: Yes. I’ve always been a baker, but first and foremost I am a problem solver. Traditional bakers use wheat, eggs, milk, butter, and sugar in nearly every recipe. Learning to make baked goods that taste great without four of those key ingredients was a challenge – and I was driven by necessity.

My kitchen was often filled with science experiments as I went about testing different products, varying ingredients, and learning what worked – and what didn’t work. I decided to write the book so that I could share what I had learned with other food allergy parents struggling to find the same answers. And I know that many parents who receive a diagnosis of multiple food allergies for their child may not be comfortable in the kitchen; my goal is to empower these parents with the information they need to feel comfortable – and even enjoy – baking! I don’t assume previous baking experience, and I even include some examples of how to adapt off-the-shelf baking mixes for those that can take that route.

Q: What has changed since you first began your baking adventures?

A: Two very important things have helped tremendously in terms of being able to find safe foods and ingredients. The first was the food allergy labeling laws, the FALCPA (Food Allergen Labeling Consumer Protection Act). When I first started searching for allergen-free products “milk” may have been listed as “whey” or “casein.” Today, the top eight food allergens need to be listed clearly on the label with their common name – in this case “milk.” For anyone who suffers from the most common food allergies, this is a huge step forward.

The second thing that has helped (ironically) is the market. There is simply a greater need for products without common food allergens, and there is also a corresponding trend in consumers seeking out both gluten-free and vegan products by choice. Companies are responding with more gluten-free choices, more dairy-free choices, and more products manufactured in dedicated facilities so that cross-contamination cannot occur.

Q: What HASN'T changed?

A: What hasn’t changed – at least not enough – is the perception of food allergies. Food allergies are a hidden disability, yet those who suffer from them appear to be completely healthy and “normal,” making it too easy for the illness to be dismissed by those who aren’t aware of how serious (and too often life-threatening) a reaction can be.

The other thing that hasn’t changed is how food allergies are treated. While there are medications to stop a reaction once it has occurred, the only preventive measure is to avoid the foods that cause the reaction.

Q: If you could go back in time what would you do differently?

It’s so easy to look back and know that my son suffered as an infant and a toddler. Despite constant visits to the doctor, we struggled with many misdiagnoses. Knowing what I know now, I would have suspected food allergies much earlier. But hindsight is 20-20. I think all parents of children with food allergies (as well as other diseases) doubt themselves and feel guilty:

I should have breast-fed longer, I shouldn’t have breast-fed so long, I should have fed my child peanuts sooner, I shouldn’t have fed my child peanuts, My house is too clean, My house is too dirty, I shouldn’t have had my child vaccinated… the list goes on.

The truth is, we all make the best decisions we can with the information we have at the time. My approach to keeping my child safe is to find great foods that he can eat!

( To learn more about Colette or to purchase Learning To Bake Allergen Free go to http://www.learningtoeatallergyfree.com  )

 

 

 

I’m Hosting a Food Allergy Event with Brooklyn Allergy Mom!

BrooklynAllergyEventFlyer

The FARE New York City Annual Spring Luncheon

I wrote this piece for the fantastic site www.asthmaallergieschildren.com, last week, after the FARE Spring Luncheon:

FARE Spring Fundraiser: Reflections from a Table Near the Front

APRIL 20, 2013 1 COMMENT

By Susan Weissman

As a long-time but no-less-weary food allergy mom, author and advocate I’ve attended the FARE Annual Spring NYC Luncheon for several years running. Yet there were years when I didn’t know why I was there until it was nearly over and the chairs were being rolled back. Why take the time and energy to show up at a food allergy event, if even for a few hours, when we food allergy parents have to contend with our day-to-day meal and safety logistics? I can mail in my check and eat my sandwich in the comfort of my kitchen while participating in several online food allergy support groups as is often the case normally. In contrast, the FARE Luncheon is gathering of the food allergy community – doctors, parents, family, and supportive friends. It is a crossroads of fundraising, education, advocacy, and self-assessment. That is a lot to take in when you live in the trenches of a medical condition. And yet, clichéd as it may be, I’ve always come away with an invigorating sense of community. So I return.

Most years, the keynote speaker is someone who may be a rock star to the audience, but is laboring in relative obscurity as far as the general public is concerned to free our children from this infuriating condition. But this year it was Dr. Kari Nadeau, whose work is riding a current wave of publicity because of a recent cover story of the New York Times Magazine.

Coincidentally, I began my day in Brooklyn attending my daughter’s 8th grade science project exhibition – a research-based display of scientific hypothesis presented in the school cafeteria. These teenagers had tested the physical, biological and psychological properties of various subjects, including their peers. Then, a subway ride and five hours later I had the pleasure of hearing Dr. Nadeau speak about her science project. She, her colleagues, and her “subjects” had just completed the first trial phase of a treatment combining oral immunotherapy in conjunction with the drug Xolair. The trial brought the children participating from anaphylactic levels of reaction to varied tolerance, which in this crowd spells progress and hope.

Inspiring though she is, Dr. Nadeau is realistic. At one point she reminded the crowd, “We are only as good as our research allows us to be.”

... continue reading on Asthma Allergies Children

 

A Dolphin with a Soft Spot: Asthma

As a first, my family went to Atlantis this year for Spring Break. Several fellow food allergy parents had told me that it was particularly equipped for handling food allergies. So if anyone reading this post want to know more about Atlantis please email me [email protected] - I'm happy to answer questions.

Aside from the eating part of vacation, Atlantis offers a variety of kid-friendly activities, including "interacting with dolphins." Thrilling. We were in.

On our third day of our stay, after donning wetsuits, all of entered a large salt water lake, and met Noah the dolphin. Noah apparently loves people and praise (as do most well-trained dolphins) and was more than willing to provide "high-fives," kisses and tricks. He stayed close to our small group, close enough so that while our instructor was talking, I could hear him breathing through his blowhole. I'd never hung out with a dolphin before Noah. So I assumed his somewhat labored breathing was part in parcel of being a mammal that must breath oxygen through a blowhole full of water. Nope. Our instructor informed us that Noah had asthma.

Eden's eyes went wider when our instructor elaborated: Noah needed to take medication through a nebulizer twice a day. "He likes it when we give him his medicine through his blowhole. Makes him feel better." What a terrific mind tickling fact for young boy with asthma to hear! Especially a young boy who had been using his inhalers for a few days into the trip due to changes in environment.

And while my good friend Henry Ehrlich over at Asthma Allergies Children later commented: "In the wild, asthmatic dolphins have been winnowed by predators that could catch up with them, whereas in captivity they are pampered," Nevertheless I believe Noah nicely illustrates the Om-like vibe of Connectedness we share in our food allergy community.

Looking Back and Around

It's nearly a year to date, since my book launch of Feeding Eden. Sometimes people ask me what I've been doing since. Of course I've been selling my book, which, while occupying, is also incredibly tedious to verbally unpack without boring my listener. So I don't say much more than "Marketing it!" And of course I've also been writing while alternately beating myself up for not writing more. Fun. But when I look back at this past year mostly I see my family and their doings. My children growing, changing, griping, triumphing, my husband and I  questioning, assessing, planning, praising.

This was an important week for food allergy treatment. The New York Times Magazine put food allergic children on the front cover, in essence letting us know that our challenges and treatments are deserving of attention. We knew that already. So if anything, publishing Feeding Eden, quieted my monkey mind from its incessant need to tell that story again and again, since it will be read and passed on.  And now I can be that much more attentive to the family who lives it.

Bittersweet Books (and maybe some reading for teens)

On occasion I've had readers tell me that they have had to put Feeding Eden down to cry. They, more or less, described "...a feeling of all those memories rushing back so vividly." And I always feel this way in response: I never meant to make anyone cry. I wanted to help other food allergy parents feel validated, in company, happy even.

Then the other day my daughter let me know that she was unhappy about a number of different things, all of which related back to being a teenager. I suggested that she might want to trade in some time using Instagram, Skype, and connecting with her peers for some time immersed in wonderful book. But after reviewing some of the current and more popular Y/A options (note: I've been on a Y/A best-seller jag for 4 months there were many titles "on the table" or more literally on our shelves) we realized at the same time that sometimes we all need a break from stories that come too close to home.

My daughter is a gobble-y reader just like me and has already read titles and series. But she has only read far less of the classics from the cannons of prior teen generations. And we are fortunate to have the Brooklyn Public Library just steps from our house. I came home with a buffet of books, non current, and all chosen for different tastes. Parents with teens in need of a different type of distraction feel free to pass on:

Childhood's End by Arthur C. Clarke: A Sci-Fi classic and I don't think I would be wrong to call it early Distopian either.

Pride and Prejudice by Jane Austen: Seems obvious but for a teen feeling worn down by social "drama" it could be consoling to read about in the parlor setting.

The Member of the Wedding by Carson McCullers: Yes, another teen questioning "who she was and what she would be in the world" but in beautiful, un-hip language.

Out of the Silent Planet by C.S. Lewis: More classic Sci-Fi stuff by a master storyteller.

A Separate Peace by John Knowles: Okay we all this is Sad as in Someone Dies Sad. But it's about a young person finding true inner strength and isn't that what we all want for our children?