Posts filed under ‘Nancy’

It’s Spring! Time for a Health Fair!

New Year’s Day may be the time for making resolutions, but the breath of spring in the air makes all of us want to live healthier lives as we get ready to be outdoors more and more. Enter, the health fair!

Two weeks ago, I had the pleasure of participating in two such events, each one targeting a very specific audience.

Sunday, March 25, brought the annual “Education Day” at The Children’s Hospital of Philadelphia (CHOP). Called Growing up with Celiac: A Forum for Parents and Children, this information-packed event was organized by Dr. Ritu Verma, pediatric gastroenterologist and Section Chief of CHOP’s Gastroenterology and Nutrition group. Dr. Verma leads the Center for Celiac Disease at CHOP and also serves as a very active member of NFCA’s Scientific/Medical Advisory Board.  This lady wears many very important hats!

Dr. Ritu Verma of The Children's Hospital of Philadelphia

Dr. Ritu Verma

The conference covered a wide range o f topics ranging from ‘The Genetics of Celiac Disease,’ with Curt Lind of CHOP, to ‘Celiac + Social Media,’ with Priyanka Chugh, and ‘Bone Health in Children with Celiac Disease,’ with Babette Semel, PhD.

CHOP Education Day March 2012

Welcome to Education Day!

Our own Alice Bast spoke about a topic that is grabbing national attention as students struggle with the gluten-free diet in school and on college campuses. In ‘Gluten-Free Goes to School,’ Alice outlined the perils and some solutions for this important facet of a student’s daily life.

NFCA fans Jillian and Danielle

By the way, there was loads of delicious gluten-free food provided as samples by vendors and also for a plentiful breakfast and lunch.

A big thanks to NFCA volunteer Sarah Terley, who passed out information to parents and kids coming to our table.

Sarah Kristin and Alice at CHOP Education Day March 2012

Sarah Terley, Kristin Voorhees, Alice Bast

Thanks to the discerning palate of my associate, Kristin Voorhees, we ended the day with a delightful meal at Garces Trading Company at 1111 Locust Street in Philadelphia.  The Garces Restaurant Group has completed NFCA’s GREAT Kitchens program and, as a result, we were confident that the gluten-free items on the menu really were produced in a safe manner.  Very reassuring. Anne Lee of Schar USA joined us as we enjoyed a delicious gluten-free meal, including fabulous desserts. The quite decadent Chocolat is to die for!

Garces Trading Company

Garces Trading Company

On Saturday, I joined the group at a free Men’s Health Fair at The First Pentecostal Church in Lambertville, NJ. Organized by Jonathan Bridges, a church member and owner of Wallingford Farms, this preventive health collaboration between the church community and healthcare service providers offered lectures plus screening for a variety of the basics: hypertension, hyperglycemia, BMI and more.  Many thanks to Karen Dalrymple and Donna Sawka of the Greater Philadelphia Area Celiac Support Group for coming out to spread the word about celiac disease, gluten-related disorders and the gluten-free diet.

So…great weather, interesting information, delicious food…an all around GREAT experience!

– Nancy

April 5, 2012 at 11:58 am 1 comment

Dinner with a Celiac Disease Expert

Some days, you just get lucky.

Two weeks ago, I had a fabulous chance to consult with an expert, learn something new and enjoy a delicious dinner in very good company.

The saying goes, if you want to learn about something, go to the source. Not often does the source come to you.

Daniel Leffler, MD, MS

Dr. Dan Leffler

While traveling through the area on business, Scientific/Medical Advisory Board member Dr. Daniel (Dan) Leffler of the Division of Gastroenterology at Beth Israel Deaconess Medical Center in Boston, graciously took the time to swing through Philadelphia to meet with us. As a result, Dr. Richard Mandel, NFCA Board of Directors member, and I enjoyed a delightful dinner with Dan in an atmosphere where we could catch up on the latest research and exchange ideas about the state of celiac disease today.

Thanks to some sleuthing by my associate Kristin Voorhees, we landed at Devon Seafood Grille on Rittenhouse Square in Philadelphia. Let me tell you, it is the place to be!

Devon Seafood Grille

Devon Seafood Grille - a gluten-free find

Because Dan had to catch a plane that evening, we dined early — 4 PM. No, it wasn’t the Early Bird Special. It seems that Devon serves all day, so no worries there. The best part is that they have a separate and quite complete gluten-free menu. Actually, many of the items on their “regular” menu are gluten-free. And, the waiter was totally knowledgeable about what was gluten-free and what was not, down to the spices used in various dishes. Impressive and reassuring!

So, after diving into oysters selected from the current best across the country and enjoying the freshest of splendidly prepared seafood, we got down to the “what’s what” part of our get-together.

Mussels at Devon Seafood Grille

You can't get much fresher than this!

The big news is all about terminology.

That’s right, there are changes afoot concerning how we define and refer to celiac disease and other related disorders. Called the “Oslo definitions,” a newly released document composed by a team of 16 physicians from seven countries outlines the preferred terms, along with terms that they assert don’t best describe the condition under discussion. That’s right; some are in and some are out.

The goal here is to develop a common language which the entire scientific, academic and healthcare communities, along with the general public, can use to refer to this range of illnesses now going under a myriad of terms that can (and do) have different meanings to different people.

Note: The name “Oslo definitions” comes from the most recent International Coeliac Disease Symposium held in Oslo, Norway in June 2011 where new definitions were introduced and discussed. The review continued after this meeting resulting in the formal document that was released in February 2012. Yes, it is hot off the presses.

While not the law of the land at this point, this consensus document has the support of leading experts worldwide, including Dan Leffler who authored the paper on behalf of the impressive group based on months of studied consideration by these medical experts and researchers, all focused on the field of celiac disease.

No, I am not going to list all of the definitions here as there is quite a list of terms, most familiar to all of us, along with some that are not part of the lay person’s daily vocabulary. (Yes, that would be me.) Should you read the document, you will see gluten sensitivity and gluten intolerance joined with other descriptors such as latent celiac disease, gluten ataxia, pediatric classical and more.

The document defines celiac disease (or, as they write it in Europe, coeliac disease). Here it is: “a chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.”

It also recommends a new way to refer to the spectrum of illnesses that involve gluten. “‘Gluten-related disorders’ is the suggested umbrella term for all diseases triggered by gluten and the term gluten intolerance should not to be used.”

There is much more to this story, of course. You can get a quick summary in NFCA’s Research News.

In short, this was a very satisfying and interesting evening. We enjoyed delicious gluten-free food and learned about the latest thinking in the field of celiac disease.

Chalk one more up for “a good time was had by all”!

– Nancy

Related Content:

March 6, 2012 at 10:02 am Leave a comment

Inquiring Minds Want To Know!

Some days, it seems that surveys are everywhere.  We are surrounded by a knowledge gap that surveys are meant to fill allowing all of us to move ahead to a better world. Some seem immensely trivial and others of grave importance.

Over the past few weeks, I have been involved in the world of surveys. Specifically, I have been working on a survey targeting anyone and everyone who is gluten-free. The point is to find out what experiences the survey taker has had with medication. By that, I mean medication of all sorts—prescription, over-the-counter, supplements, the works.

Yes, this survey is part of NFCA’s work on the U.S. Food and Drug Administration (FDA) grant to study Gluten in Medications.  We have written about this study on our CeliacCentral.org website, in our newsletter and more.

Take the Gluten in Medications Survey

Right now, we are engaged in making sure that the distribution of this survey is as broad as possible so that we certainly gather as much insight as we can. The more responses we get, the more information we will have and, therefore, the more drugs we can test for gluten content and the more targeted that testing can be to reap the best, most noteworthy and effective  results.

And, yes, this survey falls into the “gravely important” category.

So, I have been poring over lists of groups that are good candidates to distribute the survey. The NFCA staff has been sending out email notices about the survey like crazy and, then, regrouping to expand and improve our communications plan.

We know how important this research is to all who are gluten-free and who want to be certain that, in the process of trying to get well or stay healthy, they are not sideswiped into illness inadvertently.  Whether someone takes one pill a day or 16, that individual doesn’t know how much gluten, if any, she is absorbing.

We also know that pharmacists are eager to help their patients. They need to know what is in the medication they are dispensing. People ask them questions; they want to know the answers. NFCA’s GREAT Pharmacists online training program is one way that we are moving the ball along that learning curve. This survey and the research that comes out of it will advance the Gluten in Medications program in a positive fashion.

So, back to the lists.  This is a one-in-a-million chance to get it right!

– Nancy

January 17, 2012 at 8:58 am 2 comments

Woman Power!

In the 60s, Betty Friedan published The Feminine Mystique, sparking the beginning of “second wave feminism,” better known as “women’s lib.”  In the 70s, Gloria Steinem brought us Ms magazine and a title all our own as she pushed the Equal Rights Amendment.  The 1980s saw Geraldine Ferraro join the national ballot as the first woman vice presidential candidate.  Women’s History Month was added to the US national calendar in the 1990s, with women’s history courses flooding college campuses.  This century has seen women explore space, break sports records, and seek the presidential nomination.  As the saying goes, we have come a long way.

As it turns out, women have had power all along. In fact, in the healthcare arena, women have 80% of the power—or more!

Here’s the story.

On November 15th, I had the privilege of attending a conference entitled Women’s Health in an Era of Change. Hosted by Katherine Keefe, Chair of Dilworth Paxson law firm’s Health Care Group, the discussion examined the impact that the healthcare reform bill is having on women.  Lynn Yeakel of Drexel University’s Institute for Women’s Health and Leadership led the panel discussion that included Dr. Owen Montgomery of Drexel University’s College of Medicine, Anne Morrissey of AmeriHealth and Katherine Keefe.

We all learned a lot.

One statistic that jumped out at all of us is that at least 80 % of all healthcare decisions are made by women. Got that? At least 80%. Women make these decisions for themselves and for their families, including extended families of aging parents and siblings who need assistance– the whole deal.

This means that women have the power to move that mountain that will help keep our families safe. Women can demand better care, more attention, safer products. For those with celiac or gluten sensitivity in their families, this means both an opportunity and a responsibility to seek out that diagnosis that has been overlooked, to insist that the doctors get educated about celiac disease and gluten sensitivity and to get those family members tested, like it or not.

Woman power!

80% of all healthcare decisions are made by women.

Another statistic we learned, and this time a disheartening one, is that 50% of the uninsured population is women. The healthcare reform act will move these uninsured women and their families into being covered.   This means a huge impact on the primary care physicians who will be treating the newly insured.

Dr. Montgomery suggested that reform will initiate a new era with a team approach to family medicine. Right now, there simply are not enough primary care providers in the U.S. to manage the added millions of patients who will enter the healthcare system. The very practical and viable solution is to expand the role of healthcare professionals by adding more nurse practitioners, midwives and physician assistants to the primary care team. Doctors will have to practice in a more collaborative way, which means that there will be more hands available to manage the patient’s health. This approach has been embraced by Drexel and by the American College of Obstetricians and Gynecologists (ACOG).

So, it is back to the women. All of this means that women as the key decision makers will have an even more active role in managing the “continuum of care” for themselves and their families.

Here is to your good health and to the best use of the power that is in the hands of American women.

– Nancy

Get empowered! Learn more about celiac disease and women’s health.

December 7, 2011 at 9:37 am Leave a comment

I Did It!

Such a buoyant cry of delight!

This past weekend, I visited my family in Virginia which really means I went to see my two small grandsons: Max, age 2 ½, and Mason, 15 months.  Yes, they are terribly cute and amazingly clever little boys!

To keep Max amused while I was making lunch, I suggested that he work on a puzzle. It was one of those lovely wooden ones with farm animals and tractors.

Max went about his business of puzzle assembly and I turned to the niceties of kids’ lunches. All quiet on the home front.

Suddenly, I heard, “Nana, I did it!” Hands raised as if celebrating a touchdown, Max had a moment of total joy and triumph.

Max

Little Max. Isn't he a doll?

If you can believe it, his accomplishment made me think of all of the folks who have been struggling with undiagnosed celiac disease and, having finally learned the cause of their suffering, are moving into a reclaimed gluten-free life. I guess it was being in the kitchen that brought this association to mind.

We all know that this is not the easiest transition to make. After acceptance comes the search for how best to live happily in a new world. Lots of questions about what is gluten-free, followed by the search for tasty and healthy products.  At first, most women wonder about the hazards of dining out and wonder if they will ever again enjoy a lovely evening on the town. Men want to know what beer they can drink. Yes, these sound like stereotypes, but based on questions that come through our info line (info@celiaccentral.org), they’re true!

Before long, with help, the gluten-free diet becomes routine, and life improves.  And, one day, there comes a moment of realization that, in fact, a shift has been made to a “new normal.” In short, they did it.

Lunch over, Max enlisted me to “play soccer.”  His parents are athletes, so Max has been kicking the soccer ball around since he could walk. He has a child-sized goal and loves it.

So, out we went to pass the ball around and see how we would make out. Within minutes, Max had the ball in the goal.

You guessed it. “Nana, I did it!”

What is your “I did it!” moment?

-Nancy

If you have a personal victory related to your health recovery, whether it’s a new outlook, a change in habits or a successful business venture, share it on the National Foundation for Celiac Awareness’ Celi-Acts page.

If you have a question about the gluten-free diet, submit it to Ask the Dietitian.

March 18, 2011 at 10:02 am 1 comment

1,000+ Brave Snow for Gluten-Free Day

The weather outside’s delightful!

Well, maybe not.Gluten-Free Day

That didn’t deter a band of stalwart volunteers from representing the National Foundation for Celiac Awareness (NFCA) at the first Wheat-Free & Gluten-Fee Day at Weavers Way Co-op on Saturday, January 29th.

Joanne Gallagher, Annsley Klehr and Nicole Seitz slogged their way through snow and slush to arrive at the Weavers Way location in the Chestnut Hill section of Philadelphia. Loaded down with information about celiac disease and gluten intolerance, these three knowledgeable gals set up camp from noon until 4 PM in this lovely new store.

Weavers Way in Chestnut Hill
Weavers Way storefront – before the snow!

What a day!

Well over 1,000 Weavers Way members and shoppers swarmed the store in spite of the weather and the related parking chaos on Germantown Avenue.  As it turns out, a large number of co-op members visiting that day are on special needs diets. NFCA’s information about the gluten-free diet fit the bill perfectly.  Joanne reported to the store manager, “We met so many of your members who live with restrictive diets and were interested in the resources NFCA has to offer.”  Truly gratifying!

Joanne, Annsley and Nicole are all personally familiar with living a gluten-free lifestyle and were able to discuss the “ins and outs” of shopping for gluten-free food in today’s marketplace. The Weavers Way staff was very accommodating and friendly, making it a pleasure to be there.

Gluten-free customers

Who doesn't love free samples?

Store visitors had lots of gluten-free treats to try, with free samples from a variety of suppliers including local Amaranth Bakery from Lancaster, PA, as well as national manufacturers like Glutino, Nature’s Path, Mary’s Gone Crackers and Blue Diamond Crackers. They also offered a selection of wheat-free and gluten-free dips and spreads from Weavers Way’s acclaimed Prepared Foods Department.

Gluten-Free Gift Basket

Check out the raffle prize!

Weavers Way topped off the Wheat-Free & Gluten-Free Day celebration with a fabulous raffle basket full of gluten-free delights from the store. The proceeds went to NFCA to help us meet our mission of gaining a diagnosis for 1 million Americans by 2015. We are most grateful!

The event was so successful that Kim Spelman-Hall, Weavers Way Chestnut Hill Store Manager, plans to hold another event like this in the future. “Our celiac shoppers were very pleased.” NFCA will be there!

It was a GREAT day!

Weavers Way Co-Op has three locations:

  • 8424 Germantown Avenue
    Philadelphia, PA 19118
    215-843-2350
  • 559 Carpenter Lane
    Philadelphia, PA 19119
    215-843-2350
  • 2129 72nd Avenue
    Philadelphia, PA 19138

– Nancy

If you’re planning a gluten-free event, submit the details to NFCA for a free event listing on CeliacCentral.org.

There are a variety of ways to help the celiac cause. Submit NFCA’s Volunteer form today to find out more.

January 31, 2011 at 10:32 am 1 comment

Back to School (Gluten-Free Snacktime Included)

It may be December. It may be years since I carried a knapsack. But last week, I went back to school. And it was fun!

On Dec. 8, memberCeliac Workshop Displays of the Methacton School District in suburban Philadelphia held a Celiac Disease Workshop for parents of grade school children. The goal was to raise awareness of celiac disease and to answer questions parents have about the gluten-free diet.  Naturally, I offered to help out and share some materials from the National Foundation for Celiac Awareness (NFCA).

Two very energetic and enthusiastic women with a passion for telling the world about celiac disease organized this evening event. Marykay Lojewski and Caren Meyer both have children at Worcester Elementary School.Celiac Workshop Hosts

Marykay has celiac disease and kicked off the evening by telling her very poignant story as she lived for years getting sicker and sicker as she sought a cure for everything from constant nausea to violent stomach pains to anemia. (Sound familiar?) Marykay even shared her Personal Story on NFCA’s website.

Caren is a holistic health coach with extensive knowledge of the gluten-free diet. Caren answered all sorts of questions relating to healthy living and going gluten-free.

Celiac Workshop MaterialsMarykay, Caren and I covered the basics of celiac disease, the most common symptoms, what people on a gluten-free diet can eat and what is taboo, and let everyone know about NFCA’s activities and programs so they can find more information and support. Between the three of us, there were tons of handouts that workshop attendees took home.

Most interesting was the response from the folks participating in the workshop. Several of them have been wondering about their own symptoms, from migraines to neuropathy to “brain fog.” This workshop gave them a chance to share their concerns and to get tips on how to move forward.

The workshop wasn’t all talk and no play. Marykay and Caren made sure everyone attending learned that gluten-free food can be delicious and healthy. Thanks to Jacquelyne Rennie, owner of JayBee’s Café of Skippack, PACeliac Workshop Attendees , we enjoyed fabulous gluten-free treats.

An added treat came from Marykay’s chef sister-in-law: Quinoa Salad!  Fortunately, I was able to get the recipe, and I’m sharing it with you fine folks. (See below.)

Marykay and Caren plan to hold another workshop in 2011. In the meantime, we all can make that New Year’s resolution to eat in a more healthy and nutritious way, including those who are gluten-free!

Quinoa Salad

from Chef Helen Lojewski
Gulph Mills Golf Club

Ingredients:
1 cup quinoa (uncooked)
1 small cucumber sliced and cut in quarters
1 -1 ½ cup cherry tomatoes (halved)
½ small red onion chopped
Salt and Pepper to taste
Apple Cider Vinegar to taste (about 2 T)

Directions:
Cook quinoa (see below).
When quinoa has cooled, gently mix in remaining ingredients.
Serve at room temperature.

How to cook basic quinoa:
Bring 2 cups water and 1 cup quinoa to a boil.
Cover and simmer for 15 minutes.
(Note: Some quinoa requires soaking before cooking. See individual recipes.)

-Nancy

December 21, 2010 at 12:34 pm Leave a comment

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