Oats: Are they safe?

By Dascha Weir, MD

This article was originally published in the October 2016 issue of Celiac Digest, the Celiac Kids Connection newsletter.

For people with celiac disease, oats have become complicated. It used to be quite straightforward. While pure oats had been shown to be safe for most people with celiac disease (CD), they were not readily available.

Not so long ago, commercially available oats were all contaminated with wheat (or barley or rye) in the process of cultivation, transport, processing and packaging. They were simply not safe, so the gluten-free (GF) diet was defined as the elimination of wheat, barley, rye, and oats.

The development and increasing availability of so-called GF oats has broadened our options but also has created questions about the reliability and safety of our food.

The initially available GF oats were carefully grown on dedicated GF fields and transported, processed and packaged in specialized GF environments. These contamination-free or “purity protocol” oats are GF and well-tolerated by most people with CD.

However, “gluten-free” oats are no longer all “purity protocol” oats. Mechanical optical sorting, new technology developed to render conventionally grown oats GF, is now widely used. Oats used in foods labeled as GF may now include oats that have contact with gluten-containing grains in the fields or during harvesting and processing but are then separated from wheat, barley and rye by color, size and shape. This sorting process, while theoretically sound, has not been proven to consistently produce oats that are <20 ppm gluten and safe for people with CD.

As with many aspects of the GF diet, the devil is in the details.

Tricia Thompson of Gluten Free Watchdog, along with other CD experts, has drawn attention to these complexities. Ultimately, this sorting technology is only as good as the rigorous testing protocol used along with it to ensure the sorting worked. It is essential to confirm that gluten is reliably removed from sorted oats.

Gluten screening in foods is a complex task, from choosing the right test to ensuring that the food is appropriately sampled. For example, a recent article by Fritz et al in the journal Food Chemistry (1), highlighted that the process of grinding oats for testing can unevenly disperse gluten in a sample so that a single test may inadequately capture the entire gluten risk present.

Gluten Free Watchdog has reported that 14% of the oat products they have tested were above 20 ppm. For these reasons, at this time, we strongly urge skepticism about mechanically sorted GF oats and now recommend avoiding these products.

The bottom line is that “gluten-free” oats may be inconsistently GF. It is important to know what kind of oats you are buying. Determine the oat supplier of your favorite granola or other oat-containing foods. It is important to find out if the oats in your GF-labeled foods are purity protocol oats or not. Your CD dietitian and resources like Gluten Free Watchdog can be helpful, but the best way to get up-to-date information is still to question the manufacturer directly.

(1) Fritz et al. Gluten-containing grains skew gluten assessment in oats due to sample grind non-homogeneity. (2017) Food Chemistry. 216, 170-175.

Stormy Weather – Don’t Forget the Gluten-Free Food

By Francie Kelley, Executive Director, Celiac Kids Connection, Boston Children’s Hospital

In the wake of hurricane Harvey, with Irma on the way and our New England winter just around the corner, we need to think about being prepared. Here is a reprint of an article from our August, 2016 edition of “Celiac Digest” about emergency preparations.

The hurricane season is upon us and that will be followed by winter. Both hurricanes and winter storms bring with them the possibility of lost electricity, being stranded at home and even the possibility that you may need to evacuate.

Being prepared for emergencies is important for everyone. And a lot of what you need to do to prepare has nothing to do with celiac disease or the gluten-free (GF) diet. But, if stores are unable to get deliveries, fresh food will run out, shelves will be depleted and finding GF options could be difficult. In a major disaster, relief agencies and shelters may not be equipped to handle the GF diet. For families with a member with celiac disease, our preparation for emergencies needs to include ensuring access to GF food.

The Red Cross and the Federal Government have great information on-line for preparing an emergency plan. They also have great lists of the items you should include in your emergency kit. To get to the Red Cross information go to www.redcross.org and type “emergency kit” into the search box. This will give you the link for preparing an emergency kit. For the government information go to www.ready.gov and type “emergency” into the search box. This will give you links for preparing an emergency kit as well as downloading a guide for emergency preparations.

Emergency plans can be very elaborate or very basic. I tend toward a Pollyanna view and keep plans basic. For me the critical elements are having a communication plan, plenty of battery operated lights, a battery operated radio and a full tank of gas. Most of the time, I do not have a full tank of gas. In fact, I typically wait until the last possible moment to fill-up. But when bad weather is predicted I make sure the tank is full.

I do not keep an emergency kit on hand. But again, when bad weather is approaching I do make sure I have the basics in the house. This includes batteries, bottled water and non-perishable food. Canned goods are great in an emergency. But, they are no good if the power is out and you only have an electric can opener. Make sure you have a manual can opener.

 Most organizations suggest you have food for three days. A lot of the food you have on hand can be used by both those who need to eat GF and those who do not. But, given the reality that after the storm you may have a hard time getting GF food, make sure you have plenty of GF options for the family members who need them.

Here are some ideas of foods to have on-hand in times of emergencies.

  • Canned meats
  • Beans
  • Tuna
  • Beef jerky
  • Peanut Butter
  • Canned fruit
  • Fruit
  • Powdered milk
  • GF Crackers
  • GF Cereal
  • GF Bars

We all hope that we will never need to use our emergency plans. But when an emergency strikes it is good to have something in place. It is also important that we do not forget to include GF provisions in our emergency planning.

Listen to Dr. Weir

Listen to Dr. Dascha Weir talk about celiac disease and living gluten free as a guest on the Parenting Food Allergies Podcast. She answers questions about symptoms, diagnosing celiac disease, managing the condition, current research and much more.

Dr. Weir is the Medical Director of Celiac Kids Connection, a board certified pediatric gastroenterologist and the associate director of the Celiac Disease Program at Boston Children’s Hospital.

The Parenting Food Allergies podcast is a series for food allergy parents and caregivers that need a bit of advice and support from someone who understand their struggle. Hosted by Sue Webb, an everyday Midwestern mom whose teen aged sons have food allergies, Parenting Food Allergies will cover the questions and issues that food allergy parents face on a daily basis as their child grows up.

Sue understands food allergies from a few different angles. One of her sons has had food allergies since infancy while the other developed a serious allergy at 18 years and within weeks of leaving for college.

Here is a link to the podcast.

Enjoy!

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Kids in the Kitchen – Arepas

By Francie Kelley, Executive Director, Celiac Kids Connection, Boston Children’s Hospital

The Boston Children’s Hospital culinary staff hosted another “Kids in the Kitchen” cooking demonstration focused on gluten-free (GF) foods.

This time the kids learned to make arepas. We were led by Chef Travis and Chef John.

Arepas are flat-breads made of ground maize and loaded with a variety of toppings. The flat-breads are naturally GF and are found in the cuisine of Columbia and Venezuela.

We gathered in the Chef’s Playground area in the back of the cafeteria at the downtown Boston location. Chef’s Playground is an open cooking area. When seated, you can watch and interact with the chef.

Chef Travis and Chef John each made different arepas batter. Both versions started with masa harina, traditional corn flour used in Central and South American cooking. Chef John made arepas the traditional way; using the masa and water. Chef Travis used the masa and added milk and chihuahua cheese, a soft white Mexican cheese. Both versions were delicious. The traditional batter was ready right away. Chef Travis’s version was softer and the batter needed to be refrigerated overnight.

Once the batter is ready, the arepas are formed like a pancake and cooked on a cast iron skillet or grilled. They cook for 2 minutes on each side. You can use as much of the batter as you like and store the rest in the refrigerator. Both batters can be kept for 4 – 5 days.

The Colombian version of the arepas is like a pizza, the crust is flat and you top it as you like. The Venezuelan version is slightly thicker and it is cut in the middle. The “toppings” are put in the middle, more like a taco. Both versions are considered finger food and often found at food stands.

Chef John is a native of Colombia. Not only did he often eat arepas from food stands but it was a staple at home. Most days breakfast was an arepas with queso fresca; a creamy soft unaged cheese. This is an easy and tasty breakfast.

After watching and learning how to make the arepas, the kids were given an opportunity to top their own. They had vegetables, black beans, pico de gallo, shredded cheese and a variety of proteins to choose from. The chefs had previously prepared; pulled chicken, pulled pork, and steak. While we watched they grilled chicken breasts. Once topped the finished arepas was baked until the cheese melted. Every version was delicious.

The most important ingredient for topping an arepas is your imagination. Once you have the arepas crust any type of toppings will work. Chef John even told us about fruit versions he has eaten.

The class was a lot of fun. We left with samples to take home and looking forward to the next class.

2017 Holiday Party

Sunday, December 3, 2017 Noon to 3 PM

Levin Ballroom, Usdan Student Center
Brandeis University, Waltham MA

Please note, only members may purchase tickets.

[eventButton id=”5″ date_id=”11″][/eventButton]
Registration Opens at 12 Noon
Enjoy lunch from 12:30 – 1:30 PM
Bring your checkbook and shop our vendors 12 – 3 PM
Ongoing fun with music, crafts, games and cookie decorating!
Catered Lunch by Lola’s Italian Groceria
Early Registration through November 17, 2017
$15 per Adult, $12 per Child, under 2 free
Registration after November 17th
$20 per Adult, $17 per Child, under 2 free
All volunteers who work at least 1 hour will receive free admission to the event. Contact CeliacKidsConnection@childrens.harvard.edu to register as a volunteer

Thank You to Our Wonderful Volunteers

It is Volunteer Appreciation Week and we want to take a moment to thank all the wonderful people who generously volunteer their time and talents to Celiac Kids Connection. We could not do the work that we do without you.

Thank you to our wonderful board who work tirelessly to lead the group and plan our wonderful events.

Thank you to our editors and writers who spend hours creating our newsletter.

Thank you to our sponsors who donate product and our volunteer member family who assemble the Welcome Baskets.

Thank you to event volunteers who come early to set-up, stay late to clean-up and work hard during the events to create fun experiences for our children.

And thank you to everyone who supports Celiac Kids Connections.

All of you strengthen our community, and the work you do is truly extraordinary!

Kids in the Kitchen – Gluten-Free Granola Snacks

By Francie Kelley, Executive Director, Celiac Kids Connection

The hospital’s culinary department has begun a series called “Kids in the Kitchen”. It is a monthly series of cooking demonstrations aimed at teaching kids about special diets, making good food choices and learning how to cook. We were honored and excited that the first class in this series was a gluten-free theme; making gluten-free snacks with granola.

We gathered in the Chef’s Playground located in the back of the cafeteria at the downtown Boston hospital. Chef’s Playground is an open cooking area you can see into with a seating for viewing and interacting with the chef. While the demonstration was ongoing, it was broadcast on screens throughout the cafeteria.

The kids first had a chance to taste test gluten-free (GF) chicken nuggets. This is a recipe the culinary staff has been working on and plans to add to the hospital menu. The kids enjoyed the nuggets.

Chef Steve and Chef Travis talked about how to make a granola or trail mix. They talked about using cereal, dried fruit, nuts, coconut, seeds and maybe some GF granola that you purchased at the store. The key to good granola is adding the ingredients you like and skipping the ones you do not like.

They used the granola as a snack on its own and taught the kids how to make it into a cereal bar. They made the cereal bars twice. One batch was made with GF all-purpose flour and the other with rice flour. The kids like the bars with both the flours but the all-purpose flour bar was preferred. The chefs told us that the bars are good to wrap up and take as a snack to school, sports practice or wherever you go.

To make the bars come out of the pan easily Chef Steve sprayed the pan with cooking spray. While he was doing this, he warned us that not all cooking spray is GF. In fact many of the sprays designed for baking have added flour.

Chef Steve and Chef Travis made a treat that was similar to a Rice Krispy treat. They used the basic recipe but substituted GF Chocolate Chex. They drizzled the top of the treats with chocolate and taught the kids how to put the melted chocolate into a sandwich bag and pipe the chocolate onto the bars.

They also used GF Rice Chex to make Muddy Buddies. They used the recipe from the Chex website. Lemon Buddies were made with lemon juice and lemon zest. Orange Buddies were made with orange juice and orange zest.

We had a lot of fun and left with snacks to take home.

We want to thank Travis Morrow, Stephen Cooney, Michael Cogliandro, Michael Tracy and Shawn Goldrick from the hospital Culinary Staff for making this class possible. We also want to thank Jen Frank from the Hospital’s Hale Family Center and CKC Member for helping to arrange this program.

I am looking forward to the next class!

Spring Event – Fun and Learning

By Francie Kelley, Executive Director, Celiac Kids Connection, Boston Children’s Hospital

On March 5th we gathered at the Boston Children’s Hospital Waltham location for our Spring Event—a Scavenger Hunt combined with a Medical Update.

The Scavenger Hunt consisted of 8 stations with activities related to celiac disease or the gluten-free diet. Teen members of our group staffed the stations and the younger members participated in the activities. The activities included a word search, a crossword puzzle, true and false quizzes, craft activities and a video to watch. One of the stations presented different types of gluten-free grains. Kids were able to see and touch the different grains in the sensory exhibit. At each station, the kids received a sticker after completing the activity. Once they had collected all 8 stickers, they received a prize.

The Medical Update was presented by Dr. Dascha Weir, the Associate Director of the Celiac Disease Program at Boston Children’s Hospital and Medical Advisor for Celiac Kids Connection. Dr. Weir discussed the latest research and current thinking on the management of celiac disease, non-responsive celiac disease, the IgA tTG test, and repeat endoscopies.

In addition to the Scavenger Hunt we had samples from Schär, Bakery on Main, Mina’s Purely Divine, and Canyon Bakehouse. Eastern Marketing also attended the meeting and had a wide array of gluten-free products for sale.

Gluten Free Summer Camps

Summer camp and especially overnight summer camp can be tricky on a gluten-free diet. There are many great camps that are not specifically gluten free but can accommodate the gluten-free diet.

There are also many camps that offer a 100% gluten-free camp experience. Gluten-free camps are typically sponsored by a celiac or gluten-free related group, not the camp location. Gluten-free camp is held for one or two sessions during the summer.

Below is a list of camps that are 100% gluten free or use a special gluten-free kitchen or take other special precautions to ensure a gluten-free camp experience. If you’re thinking about sending your child to one of these camps, be sure to book early as most do fill up.

Note: This camp listing is provided for informational purposes. Neither Boston Children’s Hospital nor Celiac Kids Connection endorses these camps. All information is shared in the spirit of community dialogue to provide information for patients with celiac disease. It remains important that you ensure the GF status and protocols used by the camp before registering.


California

CAMP CELIAC
July 15, 2024 – July 20, 2024

Camp Celiac is for kids, ages 9 – 17, who have been diagnosed with celiac disease or gluten intolerance. Camp Arroyo is located near Livermore, California. Camp activities include ropes course, rock climbing, zip-lining, swimming, archery, boating, arts and crafts, skit night, and outdoor sports.

Georgia

CAMP WEEKANEATIT
July 21, 2024 – July 26, 2024

Youth with celiac disease and gluten intolerance ages 7 – 17 (and their siblings) can go to Camp Weekaneatit at Camp Twin Lakes-Will -A-Way in Winder, Georgia for a gluten-free camp experience including swimming, boating, camp fires and arts and crafts.


Massachusetts

Camp Emerson

Camp Emerson is an overnight summer camp for girls and boys, age 7-15. The camp is located on 170 beautiful acres in the Berkshire Mountains of western Massachusetts. They cater to campers with special diet needs including celiac disease. 

Farmer-Forrester-Chef
GF week – August 12, 2024 – August 16, 2024

This day camp for ages 6 – 11, Farmer, Forester, Chef! is located at historic Powisset Farm in Dover and is about getting outside, spreading wings, expanding senses, fostering imagination, and digging in—on the farm, in the forest, and in the kitchen. They deal with all types of food allergies and intolerance and have separate equipment for all weeks of camp. There is one dedicated 100% gluten-free week in August.


Minnesota

Gluten-Free Fun Camp
July 14, 2024 – July 19, 2024

Enjoy a week of games and adventures at True Friends Camp Courage in Maple Lake, Minnesota. The camp is sponsored by Twin Cities ROCK.


New Jersey

Camp Celiac
July 28, 2024 – August 2, 2024

Camp Celiac, located at Camp Happiness in Harwick, NJ is one of the largest celiac camp in the country with 145 campers. This is a traditional summer camp with boating, archery and a wide range of outdoor activities. The camp welcomes campers ages 8 to 16.


New York

Camp Eagle Hill

Camp Eagle Hill offers a variety of programs in Elizaville, NY. There are overnight and day camp options. They have a separate, dedicated gluten-free kitchen space.

Celiac Strong Camp
August 8, 2024 – August 11, 2024

A camp for boys and girls, ages 7 – 16 with celiac disease or gluten intolerance. Campers play games, make crafts, sing songs, and roast s’mores, The camp is located at Camp Cherith in Hunt NY.


North Carolina

Camp Kanata
August 11, 2024 – August 17, 2024

Camp Kanata is a traditional overnight camp experience for campers aged 6 – 15. One session each year is a complete gluten-free camp. They also offer gluten-free options at their other sessions but encourage campers with celiac disease to register for the gluten-free week.


Nova Scotia, Canada

Camp Silly Yak
June 30, 2024 – July 5, 2024

Camp Silly-Yak is one of the many specialty camps offered at Brigadoon Village in Aylesford. It is the first overnight summer camp of its kind in Atlantic Canada for children and youth ages 7-18 living with celiac disease


Oklahoma

Camp Waluhili
June 9, 2024 – June 14 2024

Camp Waluhili near Wagoner was proud to offer Oklahoma’s first gluten free camp in 2010. The camp offer a gluten-free experience for youth ages 8 through 17 during one session each summer.


Ontario, Canada

Camp Celiac
August 11, 2024 – August 23, 2024

This one or two week sessions at Camp Davern is for ages 7-15. The camp allows kids with and without gluten challenges to take part in an unforgettable adventure together in a completely gluten-free environment.. The camp includes the traditional summer camp activities like archery, water sports and arts and crafts.


Oregon

Camp Blue Spruce
August 12, 2024 – August 17, 2024

Camp Blue Spruce is dedicated to providing an authentic and fun camp experience free from the worry and anxiety that kids face every day just navigating their allergies. The food at Camp Blue Spruce is delicious, healthy, and allergen-free. Camp is open to kids and teens with food allergies, celiac disease, and other related conditions


Pennsylvania

NJY Camps

A dedicated gluten-free kitchen allows campers to eat gluten free while attending any camp session; Nah-Jee-Wah (grades 1-6), Cedar Lake (grades 7-9), and Teen Camp (grades 10-11). NJY camps are overnight camps located in Milford, PA. There is a dedicated gluten free kosher kitchen. The camp also offers a gluten free family weekend.


Texas

The Great Gluten Escape
July 16, 2024 – July 21, 2024

The Great Gluten Escape is located at Camp Gilmont in Gilmont, Texas, approximately 2 hours east of Dallas. Campers ages 7 to 15 are welcome. Ages  16 and 17 are welcome as junior counselors. Campers participate in all kinds of camp classics like swimming, archery, canoeing and much more.


Washington

Camp Sealth
July 29, 2024 – August 3, 2024

Camp Sealth is located on Vashon Island. Youths with gluten intolerance are encouraged to attend the session with food prepared by Gluten Intolerance Group. Activities include archery, crafts, cooking, canoeing, horseback riding, kayaking, sailing, windsurfing, photography and fine art.


Originally posted February, 2017. Updated January, 2023.