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Parenting a Child with Celiac Disease or Non-Celiac Gluten-Sensitivity

You’ve just been told by a healthcare professional that your child has celiac disease (CD) and should be following a gluten-free diet or you have made the choice yourself to have your children be gluten-free; either way it’s a lifestyle change.  Lifestyle changes can be daunting but after a certain amount of time anything can be incorporated into a lifestyle.  Be patient with yourself!  As a parent I had to make these choices and I continue to learn more everyday and I hope as I share my experience with you it may help you ease into this change.

First, before you change your diet get educated on what gluten is, where it’s found, and the health impacts it can have on the body especially if your child has been diagnosed with celiac disease (CD). You can find all of this information at GFP under the learning section. Once you understand the implications of consuming gluten when you have an allergy or sensitivity it will be easier to make the change. Then decide how you want to proceed: cold turkey take everything out at once or eliminate a few things first and gradually let go.  Either way, there is a grieving stage so don’t be alarmed if you feel a sense of loss this is normal and temporary.

Next, have a family meeting and discuss why one or all of you will be changing to a gluten-free diet.  If you have very small children you can simply substitute most items for gluten-free items. Be sure everyone understands the importance of “cross-contamination”.  If you will be a mixed family this is especially important if you have a CD diagnosis.  In my experience, it was much easier to have the whole family follow a gluten-free diet.  It made grocery shopping and cooking much easier since I didn’t have to buy multiple loaves of bread and worry about cross-contamination when cooking, using the toaster, microwave oven, etc.   I highly recommend making this a family affair it will make the person who needs to be gluten-free feel supported at home and feel confident when making food choices outside the home.  If you have older children without gluten issues in the family that simply do not want to change maybe compromise.  They can eat gluten when away from home.  If making your whole family gluten-free doesn’t work for your family just make a separate place for gluten and non-gluten items in your home.   Check out the GFP video “Creating a Safe Kitchen” to help guide you.  Also be sure to check out GFP recipes for gluten-free substitutes for your favorite gluten containing items. In an effort to support your child, remember not to eat anything in front of your child that they cannot eat. 

As your child grows accustom to eating gluten-free there will be bumps in the road. “But my friend wanted to share his goldfish with me at school.” One of the biggest challenges is when they are eating with others outside the home.  My son who has been gluten-free since age 4 started feeling awful after sharing food at school quickly discovered if he only eats “the food Mommy gives me” he felt good.  This chain of events caused him to ask a friend if the brownie he wanted to share with my son was gluten-free.  I was so surprised by this I couldn’t believe he was making the choice himself. He would also grab a piece of fruit from his lunch to eat while other kids were eating cupcakes for a birthday treat.  I quickly stocked some gluten-free cookies in the classroom to have on hand when the birthday treats come out.  The bottom line is the change will come with time. If you can teach your child to always ask when food is offered to them if it is gluten-free that helps alert the adults offering the food that maybe they can’t eat this. 

Communicating with Teachers, School Nurses, Aides and Caregivers

Another very vital step in the process is to talk with your child’s teacher and be sure they understand why it is imperative to have a solid connection between home and school.  My son shared food in kindergarten and I received a call from the teacher explaining how much trouble he got into that day.  She stated, “He just wasn’t himself.” Without going into to too much detail he had a bowel movement that evening and I knew he ate something he shouldn’t have.  The next day I spoke with the teacher and explained this is what happens when he eats gluten.  She was shocked.  It would be helpful for the teachers and aides to recognize the signs of a reaction and how to treat it properly.

Most schools do not have gluten-free items in their hot lunch programs, although this is slowly changing.  It may help to speak with the school program director to see if this is something they are now incorporating into the public school system. Fortunately, there is help for you now when communicating your needs to the schools.  Children on a medically necessary eating plan who attend public schools (or federally-funded private schools) may be elegible  for a 504 plan.  Which is a written agreement between the family and the school that outlines the needed accommodations for a child to keep them safe while at school or in the care of others.  This can be very specific for the needs of a child with celiac disease.  It should include  availability of gluten-free foods in the cafeteria, training the kitchen staff in label reading and prevention of cross-contamination and set guidelines for in-classroom food for birthday parties or special lunches for field trips.  A sample of a 504 plan for children with celiac disease are offered online and can be a starting point.  There is a thorough sample of a 504 plan for children with CD from the National Foundation for Celiac Awareness (NFCA).  Since I like to control cross-contamination, I pack lunches for my kids.  Check out bento boxes and there are loads of recipes for fun items to pack.  If you must do hot lunch talk with the cook and give your child a list of foods to choose from.

Another important detail to discuss with your child’s teacher is the need to use the bathroom.  In first grade my son’s teacher reported he was in the bathroom for a long time sometimes and this can happen but not something you would think of to discuss with the teacher.

CAUTION:  Potential Gluten in the Art Room or Using Arts and Crafts in the Classroom or in CLub Programs
Some of the “hidden sources” of gluten that may be found in the classroom or art room are: play dough, flour used to create paper mache pieces, cereal pieces, pasta pieces that are used to glue onto art projects, flour, paste, envelope or stamp adhesives.  Surfaces and hands should be thoroughly washed and cleaned after using these.  Be aware that flour that is flying in the air can be enough to cross-contaminate even the gluten-free options.  Communicating with the teachers and offering to replace any of these items with gluten-free ones would be helpful. 

Classroom or Friend’s Parties

Plan ahead for birthday or holiday parties by speaking with the teacher or the host and provide or suggest a gluten-free alternative for the party.  There are some tasty gluten-free pizzas available or make your own.  GFP offers a couple pizza ideas in their meals/snacks.  Some GF pizza crust offerings: Udi’s, Kinnikinnick,  Bob's Red Mill, Namaste, and Pamelas.  Some national companies offering gluten-free pizzas are: Zpizza, Godfather’s pizza, and Garlic Jims.  It may be a good idea to have a dozen frozen gluten-free cupcakes or cookies in your freezer and send them to school or a friend’s house when needed.  It is helpful for your child to not feel "singled out or different", so taking care by planning ahead and making your child's safety as below the radar as possible, keeps their self-esteem in tact.

Don’t forget to talk with daycare providers as well and set up a plan of action to feed your child a gluten-free diet.  I pack lunch for my 3 year old and spoke with the director and cook to make sure she only gets food from home.  The providers also inform me of days where they will have birthdays so I can provide a snack so my child can avoid feeling left out.

parenting a child with celiacFor older kids, getting them involved with shopping and cooking would benefit and provide education to them.  You can find a substitute for pretty much any food.  I can’t think of a single thing that I haven’t made gluten-free.  Dining out is a different story and the most important thing is to educate them on what to look for when ordering at a restaurant and calling ahead to see what gluten-free items they have so they are prepared avoiding unnecessary peer pressure.   For your older child empowering them to be confident in making the change is very important. 

Healthy Food Choices

Another important topic is to be sure your child eats a carbohydrate, protein, and fat with each meal and snack.  This isn’t related to food allergies but it’s good practice for behavior.  This simple task will help stabilize your child’s blood sugar and will help avoid those sugar high outbursts.  For example, when your child eats crackers add some almond butter or cheese.  Also, avoid juice, soda, candy, and simple carbohydrates like donuts, waffles, and pancakes.  You can bulk these items to add protein and fat and for an example check out our Almond Apple Pancake recipe at GFP.  This change will also help get your child ready for learning, as they won’t be riding the blood sugar rollercoaster.

Remember this is a big change.  You child will eventually make these choices by himself it just takes time, education, encouragement, and experimentation.  Use the GFP website to help guide you. 

Jessica Mitchell, RD, CNSC