The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to atten
Board Meeting
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to atten
Board Meeting
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to attend
Board Meeting
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to atten
Board Meeting
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to atten
Board Meeting
POSTPONED TO MARCH 21ST DUE TO SNOW
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to attend.
Board Meeting
The board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room B in the Flashner Conference Center.
All members are welcome to attend.
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!