Our Candy List has been updated just in time for Valentine’s Day.
You can view and download it here.
Happy Valentine’s Day!
Daycare, Preschool and Elementary School
As your child moves from daycare though elementary school s/he will develop a better understanding of his/her gluten-free needs and become more self-sufficient. But at this age they still need assistance from parents and school staff. It is important at this age for parents to educate the educator.
It is best to set aside time to sit with the teacher to develop a plan that is right for your child. In addition to speaking with the teacher, you may also need to speak with the nurse and the cafeteria or food service manager.
Ask the school if it will distribute a letter explaining individual student food issues and describing the school plan for snacks, birthdays, and school celebrations. The letter should not name children specifically, rather state that there are children with food issues, so as not to single out your child and draw attention that may make your child feel uncomfortable now or when they older. Some additional questions to ask your school:
The Classroom
- Classroom size and teacher/child ratio.
- Has this school or teacher supervised children with food issues before?
- If yes, what kinds of plans were put into place?
- Is the teacher(s) comfortable with your child’s medical condition and with making the changes necessary for your child to be safe, welcomed and included?
- Is there a full-time nurse?
- Are there other children with food issues in the class?
Snacks
- Are snacks served and who provides them?
- Is there a list of snack foods and drinks traditionally provided by the school?
- Are containers used to store snacks thoroughly cleaned and are they gluten free?
- Are there safe hand and face washing policies in place?
- Are tables cleaned after snacks are eaten?
- Are children allowed to share food?
Lunch and the Cafeteria
- How and when are tables and chairs cleaned after food is served?
- Where is lunch served?
- If your child’s lunch needs to be heated, what adult will safely do so?
- Are there any gluten-free foods offered (see middle and high school student cafeteria section)?
Birthday Celebrations
- How are birthdays traditionally handled?
- Can a frozen cupcake be kept in the teacher’s freezer?
- Can a bag of candy or special snack be kept in the teacher’s desk?
- Can parents be encouraged to send in non-food items (e.g. stickers or pencils) to celebrate birthdays?
Special Activities and Other Celebrations
- Which holidays are observed in school and which ones involve food?
- Are parents allowed to bring in food treats unannounced?
- If food is a must, encourage fruit and cheese instead of donuts and cake.
- Ask that the teacher contact you ahead of time so that you know what will be served.
Curriculum
- Is there a sensory table? Instead of barley, flour, and pasta, suggest substituting rice and beans.
- Do they cook in school? If so, when and what? Suggest using a flour free recipe and/or using a gluten-free flour mixture (you can provide).
- Does counting or estimating numbers involve food (e.g., m & m’s, cereal)?
- Is food used in science projects?
- Are there non-food substitutions that can be made?
- Review all curriculum plans in detail for any areas where changes need to be made.
Art
- Are there food materials used in art?
- Is food used in crafts (e.g., pasta necklaces, cereal collages). Suggest using gluten-free versions or avoiding the use of food altogether.
- Is play dough used? Commercially made play dough has wheat flour as a main ingredient. You can make your own “play dough” by using rice flour and corn starch (give them the recipe).
- Are stickers or envelopes used? The adhesive in many stickers and envelopes contains gluten. Suggest using self-sticking crafts to avoid any risk.
- Is pudding used to paint with?
- Is paper-mache used? Most paper-mache recipes contain wheat flour. Rice flour or any gluten-free flour mix can be substituted.
Field Trips
- How many field trips are taken?
- How are the students transported and supervised?
- Is there food of any kind involved?
Other
- Ask school personnel if and how they will educate children in the class about food issues.
- Ask school personnel if and how they will educate parents of children in the class about food issues.
- Research recipes that work ahead of time for school celebrations. Most common needs will be candy, cookies, cakes, ethnic celebration foods, and traditional holiday foods.
- Prepare to volunteer for gluten-free food needs that the teacher or school may have.
- Consider giving the teachers a list of gluten-free snacks that your child can eat.
For more information download and share
Managing Celiac Disease in Learning Environments.
Managing Celiac Disease in Learning Environments outlines recommendations from a national coalition of educators, health care professionals, food service providers, advocacy groups, and parents/guardians to develop standardized recommendations and training resources to ensure the safety of a child with celiac disease in any learning environment.
Gluten Free Camp Experience
Nate Couture, Teen Board Member, shares his experience at Camp Celiac in Rhode Island.
My name is Nate and I was diagnosed with celiac disease when I was a year old. Fortunately, since I was diagnosed at such a young age, I did not have the chance to experience foods and snacks like Oreo cookies or Gold Fish, so I do not feel like I “miss out” on it now. Luckily, for my parents they found this support group at Boston Children’s Hospital.
According to them this was their life line. When I was younger it was hard to find places that could accommodate someone with a gluten free diet. Nowadays many restaurants will provide gluten free options or alternatives to their menu in some sort of way; whether or not we can always trust them is a different story for another time. Until I was 8 years old I rarely came across others with the same diagnosis. Around that time, my mother and I were looking online at different summer camps and we were lucky enough to stumble upon Camp Celiac. This camp is like no other. All of those feelings of isolation, like you’re the only one going through this, were lessened or forgotten temporarily while there.
Aside from all the great activities at camp, knowing that everyone there is just like you is amazing. At Camp Celiac, located in North Scituate, Rhode Island, children with celiac disease, ages 8-16 years old, can be campers for 1 week each summer without worry (more so from their parents) that they will be “poisoned” or have to deal the hassle of camps that do not understand cross contamination.
The kids are separated into three different age groups from where they stay and participate in various activities. There are three sections: Woodside (8-10), Waterfront (11-13), and Retreat Center (14-16). One of my favorite parts of camp is the lake where we do swimming, boating, and fishing. Other fun activities at camp include the carnival, dance night, and skits. No matter what area you are staying in the entire camp meets up 3 times a day for meals. During each meal there is no need to ask “what is gluten free?” or “can you make this gluten free?” Everything there is just for you. It feels great to not worry about what you can eat or even have to ask if it is safe. It feels good to know that we are all basically the same and that there is not a negative connotation with the “disease”. More importantly than the food are the friendships that are built. We are able to socialize unlike at school or any social event. We can just relax and have fun because that’s what camp all about.
After the Diagnosis of Celiac Disease: Medical Follow-Up
By Dacha Weir, MD and Alan Leichtner, MD
Your family’s relationship with your pediatric gastroenterology provider shouldn’t end after the diagnosis of celiac disease has been confirmed in your child.
When first facing the diagnosis of a chronic disease, families often have many questions about the medical aspects of celiac disease to discuss with their provider. Within the first weeks of the diagnosis, providers should be available to the families for these conversations, either face-to-face in the office or on the phone.
In addition to the emotional adjustment of your child and the entire family at the time of diagnosis, the practical aspects of celiac disease, specifically related to the gluten-free diet, are the focus of many questions. This is certainly understandable, as information about what foods are safe for your child and how to communicate the dietary restrictions to family, friends and your child’s school, rise to the top of the priority list. The early days of a family impacted by a new celiac diagnosis are often filled with nutrition visits, working out new food shopping lists, learning how to read food labels, meeting with teachers, consultation with a celiac disease social worker, and seeking out other families who have experience with celiac disease.
Even after new routines are established, it is important to remain connected with your medical provider. Providers will want to see children with celiac disease in their office at regular intervals within the first year of the diagnosis. Typically, these visits are scheduled at three months, six months and 12 months after the diagnosis is made and the gluten-free diet is started. If your child is doing well, yearly visits are then recommended.
Return visits give the provider the opportunity to monitor your child closely. They are also an important opportunity for you to ask additional questions and learn new information about celiac disease. At these visits, the provider will assess your child’s adherence to the gluten-free diet and general nutritional status. They will carefully evaluate your child’s symptoms and growth to assess for response to the gluten-free diet. The provider will also monitor for the potential development of other symptoms that could indicate the development of autoimmune diseases (such as joint pains, diabetes or thyroid disease) associated with celiac disease. As your child matures, new challenges to adherence to the gluten free diet may arise, such as the transition to school or sleep away camp, with attendant increases in peer pressure. These new challenges should be addressed and supported.
In children who had positive celiac blood tests at the time of diagnosis, repeating the levels of the tissue transglutaminase antibodies (or less commonly endomysial antibodies) can help assess intestinal healing and adherence to the gluten free diet. Generally, the antibody levels return to normal within the first year on a gluten-free diet. Persistently elevated levels after one year can be a red flag that there are still significant amounts of gluten in the diet and may prompt a return consultation with the dietitian.
In summary, follow-up visits with the pediatric gastroenterology provider are an essential part of the medical care of your child with celiac disease. If things are not going smoothly, appropriate evaluation, support and referrals can be made in a timely way to get things back on track. If things are going well, these visits are a nice way to confirm that all the consistent hard work and vigilance related to the gluten-free diet are paying off!
Think your Child has Problems with Gluten?
By Dascha Weir, MD, Associate Director, The Celiac Disease Program, Boston Children’s Hospital
Interest in gluten is on the rise. The recent attention on gluten is primarily centered on avoiding it. The gluten free market has become a billion dollar business as more and more adults, and children, trial this restrictive diet. Many go gluten free as a lifestyle choice. However, many turn to a gluten free diet for medical reasons and for relief of specific symptoms. It is estimated that roughly 10% of the population have gluten-related disorders.
If you or your child feels better on a gluten free diet, involve your medical care provider to figure out why. Knowing where you or your child falls on the spectrum of gluten-related disorders is important.
Gluten and Gluten Free
Technically, gluten is the main structural component of wheat that plays a role in the rising process and elasticity of baked goods. However, the term is commonly used to describe the complex of water insoluble proteins from rye and barley, in addition to wheat. Gluten is found in many food products, beyond baked goods, both as a main component, a hidden ingredient or as a cross-contaminant. It can also be found in other commonly encountered but often unexpected products, including medications.
“Gluten free” is defined by the FDA as being below 20 parts per million. In patients with celiac disease, as little as 50 mg of gluten per day causes activation of celiac disease. While clearly some children benefit greatly from the gluten free diet, the diet is not completely benign and should be reserved for those patients that truly need it. There are clear downsides to this challenging restrictive diet. It can complicate social activities and have a negative impact on quality of life. The diet is frequently low in fiber, iron and B vitamins and can lead to overweight status in both adults and children. Gluten free food is also expensive.
Gluten-related disorders
Celiac disease is a chronic immune-mediated enteropathy of the small intestine triggered by exposure to dietary gluten (wheat, rye and barley) in genetically susceptible individuals. Celiac disease occurs in approximately 1:130 people and occurs slightly more frequently in females. People with autoimmune conditions (such as diabetes and thyroiditis), with family members with celiac disease and with specific genetic conditions, such as Down Syndrome are at higher risk of developing celiac disease. In children, the average age of diagnosis is approximately 10 years of age, though it can develop within the first 2 years of life and in adolescence or adulthood.
Children with celiac disease can have a very varied range of symptoms. Gastrointestinal symptoms can range from very mild to quite severe with abdominal pain, diarrhea, constipation and/or abdominal distention/gassiness. Poor growth and suboptimal weight gain can be a presenting sign but many patients with celiac disease have no detectable growth deceleration. Some patients have no gastrointestinal symptoms and are either asymptomatic. Non- gastrointestinal symptoms, such as fatigue, irritability, low muscle tone, headaches, joint pains, delayed puberty, oral sores, dental enamel defects, low bone mineral density or anemia are also seen with celiac disease.
The first step of the medical evaluation for celiac disease is bloodwork. Specific markers in the blood, specifically tissue transglutaminase IgA and endomysial IgA, are usually elevated in cases of celiac disease. These tests are very good at detecting celiac disease but it is important to recognize that not all children with positive celiac blood tests have celiac disease and that celiac disease can occur without positive celiac markers in the blood. For example, these tests can be unreliable if the individual has been on a gluten free diet.
The diagnosis of celiac disease is usually made from small bowel biopsies obtained by upper endoscopy. The autoimmune response in celiac disease involves damage to and inflammation in the small intestine, specifically villous blunting, crypt hyperplasia and increased intraepithelial lymphocytes are seen.
Celiac disease is highly responsive to treatment with a strict 100% gluten free diet with careful avoidance of cross contamination during food packaging and preparation. On a strict gluten free diet, intestinal damage heals and elevated blood tests normalize. Starting a gluten free diet before this evaluation occurs can make it hard to confirm a diagnosis of celiac disease. Patients with CD, particularly those with untreated or suboptimally treated disease, are at higher risk of other autoimmune disorders, osteopenia, infertility, some malignancies and nutritional deficiencies.
Identification of celiac disease allows for appropriate long term monitoring for known associated comorbidities and potential complications. A diagnosis also allows for specialized education to ensure that children and their families understand potential sources of gluten and for extra support to assist in the ongoing vigilance needed to avoid gluten exposure.
Non-Celiac Gluten Sensitivity (NCGS) is a newly characterized disorder that is still poorly understood. Patients with NCGS experience gastrointestinal and/or extraintestinal symptoms that are triggered by gluten and relieved by the removal or reduction of gluten. An important feature of this diagnosis is that it only occurs in the absence of wheat allergy, the absence of positive celiac blood work and the absence of damage and inflammation in the small intestine. Little is known about how common this condition is. The symptoms of NCGS and celiac disease overlap. Gastrointestinal symptoms typically include abdominal pain, bloating, constipation and/or diarrhea. Extraintestinal symptoms include fatigue, headaches, parasthesias, rash and/or joint pain. No blood markers currently exist to help make the diagnosis and the possibility of long term associated risks is unknown.
Other Gluten-related conditions
It is important to recognize that children can feel better on a gluten free diet if they have a wheat allergy or an allergic condition causing inflammation in the esophagus, called eosinophillic esophagitis. Patients with irritable bowel syndrome can also respond to a gluten-free diet, because of the reduction in fermentable oligo-, di- and monosaccarides and polyols (FODMAP).
Importance of a Diagnosis
If your child seems sensitive to gluten, it is important that they are evaluated before initiating the gluten free diet to identify the underlying condition if possible. Partnering with your pediatrician and a pediatric gastroenterologist is highly recommended.
Celiac Kids Real Talk
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Coming Soon: Celiac Research News
We are currently developing articles about the biology of celiac disease, areas of scientific research, clinical trials, gluten-free product testing, and the latest research news. Please check back often.
In the meantime, please enjoy some of our other content!
Gluten-Free Caterers
Looking for a gluten-free caterer for a Bar/Bat Mitzvah or other event? Consider one of the caterers recommended by members of our group below.
Can you suggest a Gluten Free Caterer? Simply email the information to celiackidsconnection@childrens.harvard.edu, and we’ll add them to the list.
Holiday Party 2016 – A Fun Day for All
By Francie Kelley
On December 4th, 89 of our families gathered at Brandeis University for our Annual Holiday Party. It was a spectacular event. We had a completely gluten-free catered lunch that included caesar salad with croutons, pasta with sauce, chicken parmesan and meatballs.
We had a DJ with plenty of music, dancing and games for the kids. There was a Kid’s Room with arts and crafts, board games and decorating gluten-free cookies. We also made a gluten-free gingerbread house. The gingerbread house will be on display starting December 15th in the lobby of the Waltham location of Boston Children’ Hospital.
There was a vendor fair with 18 vendors and lots of GF samples to try.
The kids had a great time and it is so heartwarming to see the excitement when they find out all the food is gluten-free. They could work on the gingerbread house, they could decorate the cookies and they could eat all the food without fear of gluten containing ingredients.
During the event member Ariana Mathews was given the Marina Keegan Service Award. Each year we honor Marina by bestowing an award in her name to a child/teen exhibiting charity and service in the celiac community. Ariana and her family have been active members of the group for over 10 years. Ariana is the current author of the “Ask the Teen” column. She has also contributed to the group by volunteering at events and helping to organize programs. Congratulation Ariana!
We want to thank Lola’s of Natick for catering the event, Gillian’s Foods for providing dessert and board member Debbie Ferguson for making the cake. We want to thank Kinnikinnick for providing the graham crackers for making the gingerbread house. We also want to thank those vendors who came out to the event and those that provided samples.
Our donors are; 88 Acres, Bakery on Main, Beanfields, Bob’s Red Mill, Brazi Bites, Canyon Bakehouse, Crunchmaster, Dr. Schar, Edward and Sons, Ener –G, Enjoy Life Foods, Explore Asian, Gluten Free Recipe Box, Kinnikinnick, Lisanatti Foods, Massel, Nature’s Bakery, RP Pasta, San-J and Smart Flour.
Our vendors are; Aleia’s Gluten Free Foods, Arbonne International, Camp Emerson
Camp NJY, Eastern Marketing, Gluten Free Territory, JD’s Best Gluten Free Pizza, Jennifer Lee’s Gourmet Bakery, Nüssli 118, Pixie Dust Gluten Free Chef, Pop IQ, Something Sweet Without Wheat, Still Riding Foods, The Greater Knead, Treat Cupcake Bar, Udis/Glutino and Underscore Baked Goods
I can’t wait until next year’s party.
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