Dear Fellow Parent,
Though we’ve never met, we share something important in common: we both have a child with celiac disease.
When my 7-year old was first diagnosed, I felt sad and overwhelmed. I knew things could be much worse but I was still extremely worried about her health and how we would adjust to all the changes. Everything seemed daunting at that time.
Through all the blood draws, the endoscopy, the multiple doctor’s appointments and the 4.5-hour celiac class at the hospital, there was one thing I wish all (or any) of our healthcare professionals had said to me and my husband:
“You can do this.”
Now that several months have passed since our daughter’s initial diagnosis, I’m here to give YOU that message. You can do this.
Things are much less overwhelming for us now, and our daughter has adapted well to her new world. There are still hiccups here and there, and situations which demand a lot of planning and care, but with each situation we learn and gain some confidence that we can do this. Most importantly, we learn that our daughter can do it too.
Here is a list of some of the things that felt overwhelming at first, but which feel much easier now. These are things that you will figure out how to do over the next months, just as all of us parents of children with celiac disease do:
*You will learn more than you can imagine about celiac disease. When our daughter was diagnosed we didn’t even know that celiac disease is an autoimmune disorder. We didn’t know all the symptoms it could cause (like our daughter’s short stature), and we didn’t understand the concerns about cross-contamination. We certainly didn’t know that Twizzlers and Playdoh have gluten in them! In the process of adapting to this change we have learned so much, just as you will. Before you know it you will be teaching others important facts about this disease. At the bottom of this post are some of the resources/websites we have found most helpful.
*You will be able to navigate birthday parties, playdates, school parties and field trips. All parents worry that their children will feel left out. When I heard that there were no other children in my child’s elementary school who were gluten free I panicked. With time, and with each new situation, I have realized that even if my daughter is the only one eating gluten free we can still make it work. We have learned to involve our daughter in picking replacement foods and we have tried to plan in advance as much as possible. Most of the time things go very smoothly.
*You will learn to read labels and do grocery shopping. Initially grocery shopping took lots of time and emotional energy. I would wander the aisles feeling the highs of discovering that a certain food was gluten free, as well as the lows of discovering that a favorite type of raisin or nut, for example, was processed in a facility that processes wheat. It was exhausting at first. Over time, I became quicker at reading labels and also started learning what kinds of foods were safe and things we liked. Grocery trips are much more efficient now and we have learned to focus on what we CAN eat (which is quite a lot!).
*You will learn how to advocate for your child and you will start to teach her those skills. We do a lot of calling and planning ahead now. We have learned to say things to people that may not be 100% accurate, but which alert them to the serious nature of celiac disease (for example, “My daughter has celiac disease, which means she is severely allergic to gluten”). We ask a lot of questions and always err on the side of caution, even if it is inconvenient for someone else. And every time my daughter asks me if something is gluten free, even if it is something I have prepared for her (and obviously is), I compliment her for asking me and for taking responsibility for her health.
*You will be able to go out to dinner. Going out to eat was something we used to do frequently as a family. We love to try and eat new food. It takes time, but you will figure out if this is possible for your family depending on the options in your area and how confident you feel about how certain restaurants handle cross contamination. We have found a solid amount of places we feel are safe enough to eat at. And as I’m sure you’ve noticed, there is more attention to gluten-free options everywhere. I keep reminding myself our kids’ futures will get easier when it comes to avoiding gluten.
*You will figure out how to set up your kitchen. Every family decides if they are going to be a gluten-free or partly gluten-free household. I’ve found that the decision usually depends on the age of the child. In our family we decided to eat gluten free at home, with the exception of bread for me and my husband’s sandwiches for work. We purchased a new toaster, updated our pans and colanders, and had to become much more attentive to double-dipping (e.g., be sure to use a clean knife each time you dip in the condiments!).
*You will see your child’s health improve. This, of course, is most important. Though our child didn’t have the typical GI symptoms (her short stature was the symptom that started the testing process), we didn’t know at the time that she had anemia. Once she became gluten free her energy level increased in amazing ways. She also started growing. There are likely other things we will need to do to continue to heal and support her gut, but for now being gluten free is contributing to her good health. I am grateful that we discovered she has celiac and can’t imagine how bad things could have gotten had we not known for many more years.
*You will find others who can support you. There are many people who will be able to support you in the next months. You will have family who are eager to help and learn about the disease. You will find friends with children with allergies or autoimmune disorders who will provide much-needed empathy. You will find yourself moved to tears by the person who plans a play date or party and thinks to ask what they can serve for your child. You will be grateful to the after school teacher who picks an alternative recipe for the holiday baking activity. Yes, some people will disappoint you in their dismissal of what you are feeling or the serious nature of the disease, but the vast majority will at least try to understand. Focus on those that are there to support you.
While I know that every family has a different celiac story, please know that you are not alone. You can do this. Your child is resilient because she is young and has you giving her support and love. She is strong because she is healing and she is learning to become an advocate for herself. And even if she is young, she is beginning to understand that this is her new world. You all can do this.
If you ever have questions about our family’s experience with celiac disease, please send me an email to: firstname.lastname@example.org
*Here are two helpful organizations/websites with information about celiac disease:
We are waiting for our 12-year-old daughter’s endoscopy/diagnosis. Your first sentence is where I am, personally, right this minute -emotionally.
Thank you for the message you’re sharing. I know deep down we’ll be fine – and my daughter is resilient – but right now is just my private, sad time where I’m thinking WHAT? And a million other things. Overwhelming.
I can absolutely relate. I found that taking it one day (and frankly, one meal) at a time helped a lot. You will all get through this, and you have a community to help you. Please feel free to reach out if you have any questions or just want to talk 🙂 My email is email@example.com
Thank you for this post. I have it saved on my phone to read in the moments I struggle most. I was recently told my daughter has Celiac and we are in the midst of many medical appointments etc. Sad and overwhelmed is totally how I feel and reading this has been an encouragement to me. I even feel guilty about being sad because I know others have much more serious health struggles with their child but knowing others felt the same with their child’s diagnosis gives me hope that I am not alone in how I feel.
So thank you for sharing your story and some hope in this post!
It is really hard in the beginning, but things do get much better with time and experience. You are not alone, and feel free to reach out if you ever have any questions: firstname.lastname@example.org