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Meeting Notes IconPast Meeting Notes

Media and presentation notes from past meeting presenters.

Did You Know?
A Refresher Course on Celiac Disease

March 12, 2018
Pam Cureton, RD/Nutritionist &
Samra Blanchard, MD, Director
Both of the:
Pediatric Gastroenterology and Hepatology
University of Maryland Center for Celiac Research


Following is a link to the Power Point presentations used by the presenters:



Café Style Table Discussions
June 19, 2017
Dana Elia

This is a summary of the posters that were created at each of the café style table discussions during our last meeting. Each table had a specific topic to be working on.

  • Table One: Open forum on pediatric concerns - what to tell teachers, guidance counselors, other parents about your child
    1. Educate, educate, educate
    2. Advocate for your child
    3. Bring your own seeds snacks, lunch, dinner
    4. 504 savings plan needed, hold them accountable
    5. Tell your friends and family about your child’s needs
    6. Teacher child to read labels and advocate for themselves
  • Table Two: Healthy GF shopping – best options/ best buys in the county (let’s not focus purely on the overstocks of GF junk foods at discount shops)
    1. Made with Love Not Gluten – bakery in Mt. Joy
    2. DiMaria’s in Mt Joy offers GF subs
    3. Amaranth Bakery – Lancaster
    4. Sugar Whip Bakery - Lancaster
    5. Lemon Street Market and Café - Lancaster
    6. Lancaster Cupcake
The following stores carry numerous GF products: Stauffer’s, Giant, Weis, Food Lion, ShopRite in Ocean City Maryland, Walmart, Costco, BJ’s, Wegmans, Aldi’s, Sharp Shopper, Grocery Outlet Bargain Market, Akron Nutrition Center, Rhubarbs, Big Lots, Whole Foods, Target, Trader Joe’s, Miller’s Natural Foods – Bird-in-Hand, Oasis of Bird-in-Hand

Bulk food stores such as: 
  • Musser’s Specialty foods in Goodville PA on route 23
  • Glenwood Foods route 222 to Ephrata route 322 (Snyder’s pretzels)
  • Ebenezer’s market in Ephrata – follow their FB page for sale updates
  • BB’s discount grocery- Can be hit or miss
Online stores:  Amazon, Thrive Market, GF Jules

Farm stands/markets: F&V’s, Smoketown, Echo Hills (Fleetwood), Central Market, Roots

Tips for traveling:
  • Apps to consider using:  Find Me GF, GF Near Me
  • Cruise ships cater to all allergies
  • Gettysburg – GF pizza shop in town, Dobbin House has GF items
  • Ocean City, NJ – Bella Restaurant, Ruby Tuesday, Chili’s
  • Lewes-Rehoboth area – Grotto’s Pizza, many places has GF options, crepe stand on boardwalk has GF crepes – BUT does not have a dedicated GF crepe griddle

Suggestion made for creation of an app/notification system for LAC to all members when a special GF item or sale is going on in the area
  • Table Three: What I wish my healthcare providers understood
    1. Early screeningBetter education to patient
    2. Recommend dietitian consultDo not have a dismissive attitudeTo check nutrient status routinelyKnow if my medications are gluten-free, and care about that issueKnow related/comorbid conditionsRecognize the importance of leaky gut/increased intestinal permeabilityWould pay attention to long term historyMore holistic approach
    3. Use of IB-gard, peppermint oil
    4. Even after diagnosis, primary care provider still does not understand
  • Table Four: Anything goes – share best practices with others at your table
  • Take your own food
  • Take a gluten free dessert
  • Stick with broiled dishes at restaurants
  • Ice cream’s-Cashew milk or coconut
  • Educate and promote what gluten free means
  • Separate pots, pans, dishes, sponges
  • Family or friends for dinner-Call ahead
  • Don’t be afraid to ask
  • Tell your friends
  • Communion wafers-ask your church, see recent news reports on Catholic Church stance on gluten-free communion
  • Provide presentation on silly act to friends and family
  • Be persistent and advocate for yourself
  • Carry snacks in your car or purse
  • Be prepared-always have a back-up plan



Snyder’s-Lance, Inc - "Gluten-Free Product Development & Taste Testing"
January 12, 2015
by Jana Schultz

Kara Gustafson, Sr. Sensory Technician, first gave us some background about her company and its products, especially their gluten-free lines.  She noted the impact the rising number of diagnosed celiac and gluten sensitive customers is having on the market.

As idea for any new product is first conceived and researched by their marketing staff.  Development then begins, followed by product testing.  We, in fact, got to participate in an actual taste testing of two upcoming new gluten-free mini-cracker product introductions.  We first tasted each cracker, one with a cheese filling and one with a peanut butter filling, followed by the completion of survey forms.  Our feedback, along with others, will be used to “tweak” the products.  Their goal is to produce gluten-free products very similar to gluten-containing products.

She noted the production of gluten-free products offers challenges different than those of producing gluten-containing products.  The recipes require more water and fat to prevent dryness.  Gluten-free batches are much smaller, require special handling and extruding equipment and are manufactured in a separate area.

A question and answer session followed.  Of course, many of us suggested gluten-free versions of some of their other products.


"New Gluten Free Labeling Rule” and “New Research from the CFCR"; May 5, 2014

Pam Cureton RD, LDN of the University of Maryland Celiac Clinic and of the Center for Celiac Research (CFCR) at MassGeneral

Pam’s entire set of presentation slides can seen at the following link: Pam’s Talk

New Gluten Free Labeling Rule
Pam Cureton’s excellent talk addressed the combined impacts of:
  • Food Allergen Labeling and Consumer Protection Act (FALCPA) labeling
  • Allergen Advisory Statements like “Manufactured in a plant that contains wheat”
  • FDA Gluten Free Label Rules enacted August 2013
  • Organization-certified gluten free foods
  • Current vs. proposed nutrition facts on food labels
  • Labeling on products not regulated under FALCPA including meats, rye, barley and oats, alcoholic beverages and prescription medications.
Most importantly, the talk addressed the practical ways to determine whether a product is safe for a person with CD to consume.

New Research from the Center for Celiac Research (CFCR)
Pam works closely with world-renowned gluten-related disorders expert, Dr. Alessio Fasano, and is involved with some of the wide variety of research going on in the area of celiac disease and gluten sensitivity. The broad areas of research being done in the area were enumerated. Then a summary of studies that Dr. Fasano’s group is working on was discussed. Those areas include:
  • Inhibitors of the effects of zonulin on intestinal permeability. This work is in the area of alternative treatments for celiac disease.
  • In the area of prevention of celiac disease, they are working on the effects of timing of introduction of gluten to infants and the Celiac Disease Genomic Environmental Microbiome and Metabolomic Study.
  • They are also working on a better definition of non-celiac gluten sensitivity (NCGS) and in the direction of finding a test for gluten sensitivity.
Book Recommendation
Pam recommended a new book by Dr. Fasano, “Gluten Freedom: The Nation's Leading Expert Offers the Essential Guide to a Healthy, Gluten-Free Lifestyle” by Alessio Fasano and Susie Flaherty (Apr 29, 2014).

Considered a groundbreaking, authoritative guide, it is described as an invaluable roadmap for the newly diagnosed, for those already dealing with gluten-related issues, and for anyone who thinks they may have an issue with gluten.

Making Tracks for Celiacs
Finally, she encouraged the audience to support celiac research by participating in Making Tracks for Celiacs, an annual, 5-K run/walk. It’s a great fund-raising event and is scheduled to be held in Baltimore, MD, on Sunday, October 5, 2014 on the UMBC Campus.

Pam Cureton can be contacted at: pcureton@peds.umaryland.edu or pcureton@mgh.harvard.edu
Pam was accompanied by Pam King, Director of Development, CFCR at MassGeneral: pking5@partners.org

Role of Leaky Gut in Celiac Disease and Non-Celiac Gluten Sensitivity; January 6, 2014
Dr Chris Turnpaugh, D.C., Chiropractic Neurologist, Turnpaugh Chiropractic Health & Wellness Center
  • Vendors who participated in the meeting included Betsy’s Bakery, Body Balance and Made With Love, Not Gluten
  • Our thanks to our hosts, Calvary Church, 1051 Landis Valley Rd, Lancaster, PA, for the use of their excellent facility and the help of their staff.
  • And, finally, thanks to all who volunteered their help in making this event happen!

Eating Your Way to Wellness - Cuisine for Those with Celiac and Other Food Sensitivities; May 6, 2013
Maureen Burke, Chef/Owner, One Dish Cuisine, Ellicott City, MD
Link to "Gluten Free Flours and Their Attributes" by Maureen Burke
Link to: "Are the Medications That You Are Giving Your Patient Gluten Free?"
Link to: "26 Nutritional Deficiencies in Celiac Disease According to Type"
Link to: "Top Cross Reactors: What's Being Tested at Cyrex Labs?"

Maureen Burke is a feisty Irishwoman who’s been there, done that when it comes to issues of body vs. food. Today she now owns and operates a multifaceted specialty food business supplying hospital food services with special diet needs, a retail business offering safe foods and meals-to-go as well as a new, sit-down restaurant. She offers healthy, tasty, allergen-free meals for whoever needs it. (Maureen says the phrase “gluten free, soy free, casein free, corn free, egg free, fish free, nut free, vegan” as though it were a single word!) The businesses grew from her personal search for ways to feed herself and requests from others who were familiar with the results of her search. But it hasn’t always been so.

Maureen was diagnosed with celiac disease long before almost anyone knew what that meant. She struggled to cope with the disease in the face of conflicting advice about how seriously she should take her diagnosis, with a dearth of information about what foods contained and with low availability of specialty, gluten-free foods. As a result, she developed many complications from the disease including severe cross-reactions to many foods from years of eating things that harmed her.

In her talk, "Eating Your Way to Wellness - Cuisine for Those with Celiac and Other Food Sensitivities", Maureen related, often in humorous ways, her struggles to cope and, finally, her method of meticulous record-keeping of her own consumption and personal reactions to many foods. She then talked about the multitude of alternatives to conventional wheat flours. Her twenty-plus years of experience in developing baked goods and other foods leaves her with a keen appreciation of the characteristics of many products and how they can be used to create first-class products.

Along the way she offered sage advice in dealing with, for example, hospitals and nursing homes, where people with food allergies are sometimes captive to unschooled or uncaring and, therefore, dangerous food services.

Today, Maureen is the owner of One Dish Cuisine Café, 8001 Hillsborough Rd (Taylor Village Center), Ellicott City, MD 21043, 443-759-6344. Visit her website at onedishcuisinegfcfsf.com.

Maureen is a very busy person. We were fortunate and delighted to have her as our speaker!


Coping with Celiac Disease: The Ups and Downs Before, During, and After Diagnosis: January 20, 2013
Allison L. Bates, Ph.D., Licensed Psychologist, Behavioral Healthcare Consultants, Lancaster, PA
 
Link to Allison's Presentation

Many individuals experience various emotional and mental health concerns before, during, and after the diagnosis of celiac disease or needing to follow a gluten-free diet due to gluten sensitivity. Some patients experience hopelessness, anxiety, depression, or are told by physicians that it's "all in their heads." Dr. Allison Bates discussed the common mental health and emotional issues that individuals may face when struggling with unknown medical issues before diagnosis, the stress when trying to determine what the correct diagnosis is, and the mixed emotions of happiness and disappointment or despair that come with that correct diagnosis and adhering to a life-long gluten-free diet.
 
Dr. Bates is a licensed psychologist at Behavioral Healthcare Consultants in Lancaster, PA.
 
Dr. Bates was diagnosed with celiac disease in 2003 after experiencing symptoms for less than a year. She was fortunate to have been referred to a gastroenterologist who was familiar with the disease, recognized the symptoms, and knew to pursue testing right away.
 
Dr. Bates is originally from Perry County, PA. She earned her bachelor's degree at JuniataCollege (Huntingdon, PA), her master's degree at Frostburg State University (Frostburg, MD), and her doctorate at Nova Southeastern University (Ft. Lauderdale, FL). She completed her pre-doctoral internship at The Renfrew Center, an eating disorder treatment center, in Coconut Creek, FL.

She specializes in health psychology, which is the treatment of mental health concerns for individuals who also have acute or chronic medical conditions or diseases. She provides both individual therapy and psychological/neuropsychological assessment services.

There’s Gluten in That ??!:  Sep 24, 2012
by Roberta Tripp, MS RD LDN, Clinical Nutrition Manager, PinnacleHealth - Harrisburg, PA
  • The meeting was attended by about 65 people.
  • We were treated to an excellent talk by Roberta Tripp. (See Below)
  • A separate R.O.C.K. session was held.
  • The schedule for our meetings in 2013 was announced:
    • Saturday, January 19, 2:00 pm; doors open at 1:30 pm
    • Monday, May 13, 6:30 pm; doors open at 6:00 pm
    • Monday, September 23, 6:30 pm; doors open at 6:00 pm
    • Programs to be announced
  • Vendors who participated in the meeting included Garden Spot DistributorsDelightfully PureGrandma’s Gone Gluten FreeAmaranth Bakery and PJ’s High Quality Beef Steak
    • Note:  One Dish Cuisine apologized for not being here.  They are in process of opening a new location in Ellicott City, MD.
  • Product samples were provided by Choice BatterEner-G FoodsPamela’s and Udi’s.
  • Our thanks to our hosts, Calvary Church, 1051 Landis Valley Rd, Lancaster, PA, for the use of their excellent facility and the help of their staff.
  • And, finally, thanks to all who volunteered their help in making this event happen!
Our speaker, Roberta Tripp, has been a registered dietitian for over 30 years and currently is the Clinical Nutrition Manager at PinnacleHealth in Harrisburg PA. She is responsible for 17 registered dietitians who manage the nutritional care of both inpatients and outpatients. She was diagnosed with celiac disease in 2005 and enjoys having the opportunity to put her personal experience and knowledge to good use when she does outpatient nutrition counseling on the gluten free diet by physician referral.

Roberta is a graduate of University of Illinois and obtained her Masters of Science degree from University of St. Francis. She completed her dietetic internship at Indiana University Medical Center in Indianapolis.

Roberta reccommends a couple of articles to read to help avoid gluten:
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