A Nakama Dinner with a GREAT Gluten-Free Chef

I was lucky enough to be invited by Chef Jehangir Mehta, NFCA GREAT Kitchens Ambassador, to a “Nakama Dinner” held at Mehtaphor in New York City. A Nakama Dinner is an intimate gathering of close friends and this was a wonderful opportunity to join about 25 chefs, bar owners, restaurateurs, mixologists and food writers for the introduction of Ao Vodka, distilled from Japanese rice.

One of the many cocktails served at the Nakama Dinner.

The evening featured a seven course pairing of mixed drinks developed by Shingo Gokan and delicious dishes by Chef Mehta, most of which were naturally gluten-free. The evening began with an “Eastern Gibson,” which was a mix of stirred Ao, sake and sliced cucumber, paired with tapioca chili oysters.

Shingo Gokan and Chef Jehangir Mehta

This was a light start to an evening that built with every course. The cocktails included all types of fruit and vegetable ingredients, including the flavorful “Beets Mule” made with Campari, beets, ginger and lime, “Sweet Lorraine” in which Gokan combined Ao, tomato water, green tomato confiture and basil.  My tasting partner, Firoza Mehta, favored the “Pandan Banana Cup,” which included Pandan and banana-infused Ao, raw coconut water and mint.

Shingo Gokan firing up a plate of cinnamon.

Many flavors and spices were also used including ginger, lemongrass, dill, cardamom and thyme. A highlight for me was the “Earl Grey Sour” where I was able to witness Gokan firing up a small plate of cinnamon to smoke the fifth course and the cocktail under one glass hood.

I couldn’t believe how many delicious flavors I was able to try at this event!

All in all, the meal and the drinks lit up every part of my palate and left me quite sensitized to the brisk New York City evening.  I had a fantastic time and especially enjoyed meeting the President of the Culinary Institute of America, Dr. Tim Ryan and his lovely wife Lynne.

If this sounds like a luxurious treat that most people can only dream about, you’re right. Thanks to Chef Mehta and my friends at Ao for sharing the experience with me.

Suntory, the creators of Ao Vodka, shared this drink recipe with me so you can share in the experience:

Eastern Gibson Martini:

Ingredients:

• Ao Japanese Rice Vodka (2.5 pars)
• Junmai Daiginjo Dassai 50 Sake (1 part)

Directions:

1. Stir.
2. Serve up.
3. Garnish with a thin slice of cucumber.

Enjoy responsibly!

– Jennifer

Ageing Out

Watching your children turn into adults is an interesting process. I suppose it hits all of us differently and certainly each child is different. While my daughter, Molly, has been independent for some time now, I noticed during this holiday season that she really doesn’t want me to mother her anymore…at all.

She doesn’t want my help in packing her food or vetting the choices when we are guests in somebody else’s home. This is especially hard when the personal and professional collide.

Molly just turned 21 and will graduate from college in only a few months. I am about to schedule her final check-in at Children’s Hospital of Philadelphia (CHOP) where she will get her periodic round of blood work and she will visit with the registered dietitian to review her eating habits.

Having a healthcare team that I can put my complete trust into has been such a comfort to me over the last five years since Molly’s diagnosis. I know that I have been blessed with easy access to a great team of physicians, nurses and dietitians. I can only hope that Molly is able to find a new team of doctors that share knowledge without speaking down to her, listen to her instinct (which is usually right) and value her as a true partner in her care.

NFCA President Alice Bast presents Dr. Ritu Verma with an honoree award at our annual fundraiser, Chez Gourmet.

Thankfully, my professional relationship with the team at CHOP will continue. I have come to rely on feedback from Dr. Ritu Verma, a member of the National Foundation for Celiac Awareness’ (NFCA) Medical and Scientific Advisory Council and her nurse Patty Bierly when we develop patient materials, need expert advice on patient questions or need to bounce new ideas off someone in the field who sees patients every day, all day. Their patients are from all walks of life and live diverse experiences with a wide range of personal perspectives.

Dr. Ritu Verma with my niece Temira

My six year old niece now visits the CHOP team since her celiac disease diagnosis last year. In seeing my family through two diagnoses, and in observing many different diagnoses within my family, from lactose intolerance to cancer, here are my tips to ensure a positive experience with your healthcare team.

1)      View your healthcare providers as a team. Each specialty may provide a unique piece of the puzzle, but make sure you provide your entire health history to each provider. Symptoms may or may not be related, but the more thorough you can be, the better.

2)      View yourself as the captain of the team. Or the most valued player. Ask questions and make sure you fully understand what your healthcare team is saying. If you have a provider that doesn’t have the patience to listen or the vocabulary to respond in a way you can understand, find another provider.

3)      Be diligent. Don’t wait for the answers to come to you. Make sure you know all the tests that are being ordered and when they will return. Call for results – every day if you have to. Review the results yourself to ensure you understand them. Learn when new medications, supplements or dietary modifications are supposed to take effect.

4)      Have a good attitude. Smile therapy works. If you can see the glass as half full you will be more content with the life that you have. It was the only one you were given, so make the best of it for you and for those around you.

When you are an educated and empowered healthcare consumer, you can more easily navigate what can be a treacherous road of obstacles. And you can conquer the course.

– Jennifer

Snapshot of the 15th International Celiac Disease Symposium

Last month several members of the National Foundation for Celiac Awareness (NFCA) team participated in the 15th International Celiac Disease Symposium (ICDS), the most comprehensive celiac disease meeting in the world. Held September 22-25, 2013, in Chicago, ICDS was a whirlwind conference with a chance to meet with NFCA’s distinguished Scientific/Medical Advisory Council and catch up with fellow colleagues from all walks of the celiac disease field. We also enjoyed the opportunity to meet new people and, finally, put faces to names of individuals we regularly work with remotely.

In her October 2013 newsletter note, NFCA President Alice Bast shared some highlights from NFCA’s experience at ICDS 2013. But this was just a sneak peek! Some of our NFCA staff have compiled an informal list of discussion topics and statistics that resonated the most. To give you an idea of individual interests, we’ve categorized the meeting highlights by staff member.

Head to NFCA’s Research News Feed on CeliacCentral.org to get all the highlights!

– Kristin

Gluten-Free Products at Expo West 2012: New Snacks, Better Nutrition

Last weekend, Alice and I went to Natural Products Expo West in Anaheim, CA. It was a blast!

Let’s start with the magic of Disney: their chefs are a delight, and the 8:40 p.m. nightly fireworks were icing on the gluten-free cake.

Speaking of cake, gluten-free sales continue to boom. At the Expo, we learned that Mintel projects the market to reach between $8.5 and $9.9 billion by the end of 2013. Mintel, along with market research firm SPINS, stated unequivocally what we all know – that gluten-free is a long-term industry trend that is here to stay, not a short-term fad that will fade into distant memory.

As far as products go, we saw the continued abundance of gluten-free salty snacks, including several lentil-based crackers. We previewed Rudi’s new tortilla, which didn’t crack or break when rolled or folded, and we spent Thursday evening with the team from Rudi’s and Charter Baking, including their CEO Jane Miller.

We saw the emergence of stronger nutritional profiles at Expo West this year. Schar’s new Gluten-Free Multigrain Ciabatta Parbaked Rolls are delicious and satisfying. And Lucy’s has developed a brownie bite free of most major allergens. Also free of all 8 allergens was Enjoy Life’s individually-wrapped packs of trail mix, providing easy-to-grab fiber and protein from a flavorful blend of seeds.

After an endless day of sampling chips, pizza, cookies and bars, I was especially excited to eat some actual veggies. Thank you to Kettle Cuisine for their delicious array of savory soups (I love the Roasted Vegetable) and Thai Kitchen, for their curried vegetable stir-fry with fresh pea pods and peppers. Yummy.

I spent the plane ride home reading the story of Bob Moore (of Bob’s Red Mill), whose inspirational act of generosity caught our attention when he gave the company to his employees on his 81^st birthday. “These folks helped me build the company up,” Bob told me. “How could I do anything else?”

– Jennifer

My Special Diet

I used to be the rogue in my family.

I became a vegetarian more than 20 years ago, when vegetarianism may have been mainstream in California, but was a radical idea in my New Jersey suburb.

I was the veto vote. I was the one everyone had to accommodate. I got to pick the restaurants, I had the “pleasure” of asking the server again and again which menu items might be appropriate for me, and my family did everything they could to avoid having a holiday meal at my house. Face it, no meat eater likes Tofurky (and since my daughter’s celiac diagnosis, we don’t eat it anyway).

I remember how enraged I would get when a piece of sausage was found in my soup. I actually ended a friendship with someone because she fed my daughter a fish stick.

Life has gotten much easier for me. It’s hard to find a restaurant today that doesn’t have a vegetarian entrée to offer its guests. Restaurants understand that chicken stock is not vegetarian. I hardly have to ask questions anymore.

Now, my daughter, Molly, is the veto vote. She has celiac disease; I don’t. I can eat anywhere, but she needs to be picky. And if I thought eating out could be challenging with my preferential vegetarian diet, I was sadly mistaken. Exposure to a bacon bit might make my stomach turn, but that is entirely figurative. If my soup is made with chicken broth or my miso with fish paste, I might not even know. And I can go about my business undisturbed by the ignorance of the person who served me.

People with celiac disease and severe forms of gluten sensitivity do not have that luxury. Every business trip I go on, someone gets sick from cross-contamination. It’s impossible to go through every scenario to uncover every place where gluten might be hidden in a meal. You have to be educated, you have to be confident, and you have to be diligent. Every meal, even if ordered from a gluten-free menu, requires detective work. Every sauce is suspicious. Grill marks are a dead giveaway. And that gluten-free dessert may be riddled with airborne flour.

I sure hope it doesn’t take 20 years for the restaurant industry to catch up.

– Jennifer

Learn about NFCA’s gluten-free restaurant training program: GREAT Kitchens

Holiday Giving: What’s Your Approach?

It’s a season of giving and the time of year many of us line up fundraising appeals from various organizations and begin deliberations of who to support this year.

I find philanthropic psychology to be a fascinating topic, and I love to learn about the ways in which different families and cultures approach giving.

I’ll share mine.

My grandmother would send an $18 check to any organization that sent her an appeal. (For those curious about the 18 denomination…it’s Jewish thing. The Hebrew numerals for the number 18 are the same characters that make up the word life, so it’s good luck to give in denominations of 18.) I didn’t know this until I was in my 20s and already working for a nonprofit. I hoped that she would be so proud of my accomplishments that she might even send $180! Alas, two weeks later came our check for $18.

NFCA - A small but mighty force!

In general, I personally prefer to send more dollars to fewer organizations, but my giving does mirror my grandmother’s in one way. I give $18 to anyone who knocks on my door. Ok, well anyone who represents a cause that I don’t find objectionable. Also, every Chanukah, we light a candle for others and, instead of a gift, I provide a blank $18 check to each of my girls (and any guest joining us that evening), and I let them pick an organization to give to this year.

When I started working for NFCA, my daughter had been diagnosed with celiac disease only 4 months. I knew that celiac disease would be something I would care about for the rest of my life, but, at the time, I didn’t realize that I would actually be working for an extremely compelling cause. You’ve heard the facts before: 95% undiagnosed. A direct social cost of at least $14 billion per year in critical healthcare dollars. The lack of research on the disease and its spectrum. The personal devastation undiagnosed celiac disease can cause for entire families. I could go on and on.

I understand why celiac disease is a niche cause among healthcare givers. When I talk to people about the National Foundation for Celiac Awareness, I often get blank stares from those not connected to “the tribe.”

“You know…the gluten-free disease.” Recognition. “Really? That’s connected to a medical problem?”

We have a lot of work to do.

I’ll be honest with you, we need your help. We realize that gluten-free food is expensive. And that NFCA looks snazzy with blogs and webinars and cooking videos. But we are a small organization with a very loud roar. Really. Check out how few people there actually are running our programs. And they’re working really hard.

NFCA is among the organizations I choose to support with my charitable dollars. If you’re reading our staff blog and have had the patience to read all 479 words thus far, you are clearly interested in what NFCA is accomplishing everyday.

Please donate today. And in the process, think of my story and how your own personal history has influenced your decision to do so.

– Jennifer

Celiac Disease Testing at Home (Or the Office)

[Update! Dr. Dan Leffler is hosting a LIVE Teleseminar about this research study on Monday, July 25th, 3-5 p.m. ET. Dr. Leffler will also talk about the pharmacist’s role in distributing kits and educating consumers. Pharmacists are encouraged to register at www.pharmacybusinessceliacwebinar.com. While you’re at it, learn more about gluten in medications and NFCA’s GREAT Pharmacists training program on CeliacCentral.org.]

I don’t care for needles, which is why I was thrilled when our friends at Beth Israel Deaconess Medical Center (BIDMC) asked us to try out the Biocard fingerprick test kit. The at-home test is part of a research study Dr. Dan Leffler, Director of Clinical Research for The Celiac Center at BIDMC, and his team are conducting.

“While not currently approved by the FDA, these tests are still being researched as it is both imperative and necessary to explore any new possibilities for increasing celiac diagnoses in the U.S.,” said Dr. Leffler, noting the importance of this study.

My daughter has celiac disease, and our family’s trusted clinician, Dr. Ritu Verma at The Children’s Hospital of Philadelphia, recommends screening every 3 years for first degree relatives who have the celiac gene. For me, it was about time for a follow-up antibody test, so I volunteered.

Ready for testing!

When the kit arrived, the staff and I gathered around and disassembled the package. I admit that the instructions were a little difficult to understand (especially because we had a reproduced copy and it was hard to see the photos). But once we understood the process, it was simple as could be.

It's not as scary as it looks.

You place the small, plastic device on your finger and release the trigger. There was a startling pinch, and then a numb feeling that lasted longer than I expected. The kit includes a small tube in which to collect the blood sample, which is then mixed with a solution and dropped onto a test strip that will display a control line. If antibodies are present, the control line will be joined by an additional line after 10 minutes.

While I am thankful that I have access to the most amazing gluten-free food (Shout out to Main Line Baking Company, which made Nancy’s delicious birthday cake this month!), I was still relieved when the 10 minutes passed and only one line appeared on the strip.

Preparing the solution.

I thought a lot in those 10 minutes about what it would be like for someone who doesn’t know anything about celiac disease to see a second line appear on the test strip. What kind of educational materials would be important to include in such a kit to empower possible celiac patients? Getting the right information is critical, but what’s the best way to share it?

What are your thoughts on this form of testing? Do you think self-diagnosis would increase if kits like this were readily available, and is that a concern? Weigh in with your comments below.

– Jennifer

Gluten-Free Passover: Restriction or Freedom?

The Jewish holiday of Passover centers on the symbolic use of food. The 8-day holiday prohibits Jews from eating grains, unless they have come into contact with water for less than 18 minutes and were prepared under strict Rabbinic supervision.

While Matzo (typically made from wheat) is a staple of the Passover diet, many products specially made for Passover contain potato and other creative mixes of non-grain ingredients. These are valuable products to those on a gluten-free diet, and they may only be found at this time of year.

Fried matzo - One of my favorites, gluten-free style!

Passover celebrates the journey of the Jewish people from slavery to freedom, when they left Egypt with only unleavened dough on their backs. The holiday encourages us to put ourselves in the shoes of our ancestors, look at our own modern lives, and take action against oppression.

It’s an interesting dichotomy that we restrict what we eat to remember our ancestors, but at the same time we celebrate our many freedoms. We recall the stories and embrace the position we have come to enjoy as 21^st century Americans.

But as I look at my own family, I can’t help but think of my daughter Molly, and how she lives every day as a slave to her disease. Not only is she restricted from the basic freedom to choose what she eats, but she also must opt out of many social situations because of cross-contamination concerns or a lack of acceptable food choices.

I am thankful, however, that Molly knows the face of her oppressor. Her diagnosis allows us to make accommodations that embrace her at our table. My Grandma Pauline was not so lucky. She sat out of many holidays and family celebrations due to (what I think was) undiagnosed celiac disease. She spent much of her 84 years not able to travel and not even able to leave her bathroom. She didn’t know the face of her enemy.

Molly and my grandmother at a Seder several years ago.

The Torah refers to Egypt as a narrow place. When I think of Molly eating alone in her dorm room every night while all other first-year students happily socialize in the dining hall, or I think of my grandmother sequestered to her tiny bathroom while our family tried to enjoy another Thanksgiving without her, I understand this narrow place in a whole new way.

Fortunately, even Matzo is now offered in gluten-free versions. I recently had the chance to test out Yehuda’s Gluten-Free Matzo-Style Squares. How did it go? Find out by reading my review at www.GlutenFreeHotProducts.com.

How do you celebrate gluten-free Passover in your home? Do you focus more on the restrictions or freedoms associated with the holiday?

– Jennifer

March Madness in the Gluten-Free Market

T minus one month and counting. I am really looking forward to Natural Products Expo West in March. As you may have read in our February newsletter, Alice is facilitating an exciting panel about the gluten-free marketplace, including a segment on food safety and testing by Quality Assurance International, the nation’s largest certifier of organic labeling claims.

We will be setting up shop with our partner, the distributor Tree of Life (a KeHE company), where Beckee will be talking to both retailers and manufacturers about opportunities in the gluten-free marketplace.

Expo West is always an exiting trip because the gluten-free industry has grown up within the natural and organics category. And it’s where you can really see the explosion of tastier and more nutritious food.

Speaking of nutritious, Alice will also be a featured speaker at an ingredient and food technology conference discussing the movement of the marketplace to high quality and nutritionally dense foods. She will be accompanying GREAT Business Association member Penford Food. The company produces a starch that improves taste, texture and shelf life when used in baking.

While baking is not my thing, I do rely heavily on the bakers I know for my daily carb fix. And thank God for Whitney’s chocolate stash in the front office!

– Jennifer

A “Free” Thanksgiving

It was an interesting Thanksgiving this year with heated discussions, not on politics or pop culture, but about the dietary requirements of our motley group. This was an improvement over the last two years…last year our gluten-free pot pie got stuck in an oven fire, the year before Thanksgiving came only one day after Molly’s celiac diagnosis.

For 16 years, I was the only one to be accommodated. My vegetarian diet kept everyone away from my home on Thanksgiving if they could possibly avoid it. Now, we had one gluten-free, one soy-free, three lactose intolerant and one on a very strict diet for interstitial cystitis involving no preservatives, low acid and a whole lot of pear juice. My sister’s father-in-law was grilling us because his doc suspects he may be lactose intolerant. (I told him to be tested for celiac because he likely has the gene.) He was inquiring whether or not there was dairy in pickled herring.

For me, I actually tasted the turkey.

-Jennifer