Tips for Supporters

It’s so important to surround a g-free kid with plenty of “supporters”, as we call them. Supporters have a big role to play in the successful raising of a g-free kid. Depending on your child’s age at diagnosis, there is a whole spectrum of feelings that may go along with their diagnosis. They shouldn’t feel alone in this…when surrounded by a strong support network, they’ll be able to thrive wherever they are!

newgroupPictured above are some of our best supporters, who join us every year for the annual Walk for Celiac Awareness. Supporters can come in all different shapes and sizes:  parents, siblings, friends, grandparents, aunts, uncles, cousins, teachers, principals, lunch ladies, school nurses, Sunday School teachers & coordinators, neighbors — you name it. Basically, it would be wonderful if every person in a g-free child’s life was a supporter. Families should try their best to make it happen, but if certain people don’t come around to their way of thinking, they need to make the best of it and focus on the people that do.

Positive People Wanted
Everyone involved with a Celiac child needs to understand the importance of a positive attitude — right at the beginning of the whole transition into gluten-free living. This is of utmost importance for a child. Supporters ultimately want to reinforce the idea that the
g-free kid should feel lucky to have been given the diagnosis, so that he or she will be a healthier person from now on.

Supporters need to be aware of the way they talk about Celiac and the gluten-free diet when the child is around. No one should be talking with pity in their voice, challenging parents about the diet, saying “you poor thing” or making similar comments. Supporters are encouraged to go out and try to find new and tasty GF treats for the child, and present the foods themselves (after approving it with the parent first). Nothing says “I love you” or
“I care about you” to a g-free kid than when they see other people (carefully) making GF foods for them or buying them fun things to eat.

Supporters can let the g-free kid and his/her family know they care by:

  • being supportive (not dismissive) about the gluten-free diet
  • researching Celiac disease and its effects
  • not treating the child as if he/she is “sick”
  • passing on to parents any helpful information they might find along the way
  • splurging on GF food that they just discovered for the child
  • going over a recipe they want to try to make with the child’s parent beforehand
  • supporting them in a local walk or run
  • letting them know they are there if they need an ear or any other help
  • just letting them know they read this web page and that they are there for them as a supporter….it will mean a lot to them.

The best kind of supporters
Thankfully there are still sensitive and courteous people out there who sense the need for positive talk and who see the importance of the diet. Sometimes parents will find people who actually get it and want to understand it fully. They listen to the parent’s explanation and ask thoughtful questions. Sometimes supporters will call me about a food item to verify that it’s okay for my girls to eat. I’ve had a few Moms call me up and ask how they can send in something gluten-free for the whole class so my daughter will feel included. I always thank these thoughtful people profusely for their kindness and they have brought tears to my eyes on more than a few occasions.

Doubt, shock & disbelief
Sometimes, it may be harder than parents think to get certain relatives and friends to understand the seriousness of the gluten-free diet. There are people who will tell parents (or make them feel like) they’re overreacting or exaggerating — especially if their child is a “Silent Celiac” or one who never had any major outward symptoms. It may be even harder if a child has had to go gluten-free for other reasons like NCGS. Some people think that with these type of kids, since you can’t see a reaction to gluten (like you do with an anaphylactic reaction to a food allergy) that it’s not for real. Unfortunately a little bit of gluten can hurt a lot, whether you see a bodily reaction or not. Supporters need to understand this.

Since parents never know what to expect from someone, they should always make sure they tell people about their child’s diagnosis in private, so the child doesn’t see any negative reactions. There will be people who act panic striken when parents tell them their child has CD. They freak out at just the thought of ever giving the child anything to eat ever again. Please make sure the child doesn’t see or hear this type of reaction or self-esteem issues may follow.

Older generations may have never heard of gluten before and might have a hard time accepting Celiac disease as reality, so it may be discouraging to hear or see their reactions. Therefore, don’t make the initial explanation in front of your child…

Dealing with downers
If parents find themselves feeling annoyed with these types of people, it is important not to show it in front of the Celiac child. Conflicting parties should make it a priority to discuss situations without the child around. The child should not be made to feel like he or she is the cause of any friction or trouble between people.

Supporters should avoid questioning parents. Believe it or not, I’ve had people say such things as, “Can’t she even have just one cookie?” or “Can’t you just scrape the breading off this chicken nugget?” or “Can’t you just peel the cheese off this pizza and let her eat it?” Supporters need to understand that even a little bit of gluten can harm a g-free kid, but they won’t realize this by themselves. Give them printed (or online) information to read so they will come to understand the reasons for it all…

Supporters should try to keep in mind that a parent only has their child’s best interest and health in mind. They really are not trying to make life more difficult than it is.

grandmaJSupporters in the kitchen
When a supporter first tells a parent that they would like to make something for your g-free kid, you may feel some ambivalence… Some parents will be moved that supporters want to make the effort for their child, and others will be totally against it. Those families don’t trust anyone else but themselves to make safe food for their families, on account of super sensitive stomachs, allergies or other reasons. Personally, we love when family and friends make the effort to make us gluten-free treats. We, however, know that we can trust certain people to do things right, while avoiding cross contamination. Of course we’ve been gluten-free for a few years now and our family & friends have had time to learn how it all works. Every family needs to decide how to handle this situation…

If parents make the choice to accept GF food from a supporter, they will need to go over some things with that person beforehand, so that food will be safe to eat in the end. It is extremely uncomfortable for a parent of a Celiac to have to turn down a specially prepared food that was intended to be gluten-free, but which cannot be verified as such. Supporters should always go over recipe ingredients with parents beforehand, so parents can doublecheck ingredients. The reason for this is because a parent cannot allow a Celiac child to eat anything questionable. The smallest amount of gluten can cause internal damage to Celiacs, even if you can’t tell on the outside. 

Parents can explain:

  • that there are many more things to watch out for than just the word “wheat” on labels. Parents can first provide supporters a list of gluten ingredients to use when grocery shopping
  • that even with this list, parents must still verify ingredients and/or read packaging
  • why it’s important for supporters to take special precautions to avoid CC while cooking or baking (dedicated strainers for pasta, parchment paper on top of cookie sheets for baking, muffin liners for cupcakes, etc.) for each particular recipe
  • how much it means to them that a supporter is making the effort and how thankful they are that the supporter is being patient and understanding about how particular the parent must be.  🙂

cousinsHere are some examples of what thoughtful people have done for our family:

  • After I was first diagnosed, family members pitched in and got me a huge surprise gift basket of GF food items that they had all shopped for at Christmas
  • A group of women friends from church got together and also surprised me with a gift basket of GF goodies after diagnosis
  • My younger sister makes GF sugar cookies every so often and invites my daughters over to frost and decorate them for different holidays, and also keeps freezie pops and GF treats at her house for my girls
  • My older sister sometimes mails me GF power bars and other GF items she finds down south
  • My sister-in-law makes chicken souvlaki as her meal for family parties instead of pizza and also uses GF pie crusts when making desserts
  • My mom makes us GF meatballs and spaghetti on occasion, keeps GF crackers and snacks at her house, makes GF pie crusts for us, makes us special gravy and tries to keep GF rolls in the freezer to make garlic bread on occasion
  • My mother-in-law makes us this incredible stuffing for holiday meals, and GF dips that we can all enjoy at parties. She makes sure there is a GF cake or something for dessert, tries new recipes and keeps GF snacks at her house for sleepovers
  • My dad invites us over for GF pancakes sometimes, and shows us how he uses a separate griddle, spatula, etc. so we don’t need to worry about cross-contamination. He surprises our girls by buying GF treats like Cheetos, Peeps, corn chips, etc.
  • My elderly neighbor went to a nearby specialty store and bought us GF products to try. She is the one who introduced us to our favorite Chebe mixes
  • A thoughtful friend of mine always makes sure she brings something GF for me whenever we meet up with women from church at different get-togethers. She brings chocolate covered strawberries, has bought me packages of GF crackers to have with cheese, a box of Pamela’s lemon cookies, etc.
  • A few women from church pass on GF recipes and articles whenever they come across them in e-newsletters or in magazines
  • A parent I met while my girls were in preschool (who has since become a friend) made an incredible GF cake for the preschool’s graduation party, and has since made us GF candied nuts and other treats. When she has a party for her daughter, she lets us know that she made GF cupcakes so everyone can have the same thing.
  • A few moms have called to see what GF treats they can bring in for the girls’ classes
  • My husband’s grandma figured out how to make her famous cheesy potatoes without using soup or crushed cereal on top, so that we may eat it too.

There are so many ways to make a g-free kid feel special. Please share this page and website with the supporters in your life…and feel free to add your thoughts below.

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