by Lisa Edwards, Ph.D | May 24, 2018 | Celiac Disease, Hopeful Mama |
It’s been a year since our daughter was diagnosed with celiac disease and it’s hard to believe how far we’ve come as a family. At the beginning it was so daunting—we didn’t even know that celiac disease was an autoimmune disorder and we didn’t understand how complicated the risk of cross-contamination would make cooking and eating out. To top things off, our daughter had signs of another possible autoimmune disease, which is common in people with celiac disease. Our learning curve was steep, but the good news is that we learned and adapted. Even by the first six months, things started to feel more manageable and we could see that we would be able to tackle issues and situations that seemed like obstacles at the beginning (you can find my article for parents who feel overwhelmed by a new celiac diagnosis here).
To most adults it might not sound so hard to eat gluten-free, especially in today’s society. But if you add the fact that with celiac disease you have to ensure that cross-contamination doesn’t occur (e.g., the hot dog can’t touch the bun, everything has to be cooked in separate pots and pans, and anything fried has to be cooked in a dedicated fryer, which is very rare to find), it gets more complicated. On top of that, imagine if you were a kid. You might not fully understand why you have this illness, but you definitely know that you can’t eat like everyone else and you are different at EVERY event where food is involved. Pizza is the foundation of most kids’ events, not to mention cake, cupcakes and cookies, goldfish and pretzels. Yes, there are gluten-free versions of each of these, but what child wants to feel different and have to bring alternative foods to every party or get together?
Over the past year, I have watched my daughter navigate her new celiac diagnosis like a champion. I am so proud of her! She knows how to ask if food is gluten-free, and she knows how to manage it when she is often told that she can’t have what is being served. Sometimes she cries out of frustration when she gets home from a party, but other times she just rolls with it. As parents we constantly plan ahead, and we eventually figure it out. And more than anything, my husband and I have been absolutely in awe with how considerate so many teachers and other parents have been during this year. These people have helped us adapt to our new world, and they have gone above and beyond to ensure that our daughter doesn’t feel left out. In honor of Celiac Awareness Month, the end of the school year, and my daughter’s 1-year anniversary of her diagnosis, I wrote this post with gratitude for all those people who have made life so much easier for us and for our child:
Thanks for letting me talk about the celiac diagnosis and for not minimizing our experience
Any big adjustment or health concern is so all-encompassing, especially when it relates to your children. You are raw at the beginning and it feels like all you can think about. Even when you know things could be much, much worse, it still takes time to adjust. At the beginning my daughter’s health was on my mind constantly. I practically started conversations with strangers at summer parties by talking about the celiac diagnosis and food options. With my own friends, I know I talked about it all the time—about lab results and research, and how to handle upcoming events and situations. I’m so grateful to those friends, teachers and colleagues who let me talk about and process this new change in our lives. I’m also grateful to those people who didn’t minimize things by saying “at least there’s gluten free food everywhere now!” or “at least you know what she has!” Even though this is all true, I appreciate that our friends knew that any health adjustment can be hard, and that sometimes just listening is the most supportive thing you can do.
Thanks for asking questions about celiac disease
We’ve learned that to ensure our daughter’s safety, it’s much better to ask than just assume. We are constantly calling ahead at restaurants and asking questions once we get there. It’s amazing how much ‘fine print’ there is when it comes to food safety and gluten-free foods. For example, while there are many pizza chains that now have gluten-free pizza, if you call or read the fine print you see they can’t guarantee the pizza won’t be cross-contaminated and don’t recommend it for people with celiac. I am so grateful for our teachers and friends who have asked us before planning meals, and have let us know when they want to learn more about celiac disease. Also I’m so appreciative of those who are understanding when we explain what we’ve learned about celiac and the foods and practices we have to avoid. It might seem like overkill to most people, but once you understand the disease you realize what is required to manage it effectively and ensure safety.
Thanks for putting in the extra effort to help our daughter not feel left out
This is the one that makes me cry, every time. The mom I texted to let her know I’d be sending a gluten-free cupcake with my daughter for a birthday party who texted back to say she had already bought her some gluten-free cookies. Or the afterschool teacher who called to say she was planning a big cooking event and wanted to make sure she was using ingredients that our daughter could have. Or the family friends who bought chips for a BBQ that were all gluten-free so we wouldn’t have to worry about my daughter eating the wrong kind. None of this was required, but these gestures meant so much to us.
Thank you to the friends and parents who pull us aside before a get-together to let us know what is safe for our daughter to eat. Thanks to the daycare and school teachers who have asked to meet with us to learn more about celiac, and who have tried to ensure that our daughter doesn’t have to always have a separate snack or treat. Thank you to the friends who make their dishes with gluten-free soy sauce just so we know our daughter can have her favorite food. The list goes on and on…
Thank you ALL for going above and beyond. We would never expect that everyone would do this, but please know that it is so appreciated when you do!
P.S. The picture with this post is from a gluten-free ice cream party my daughter had with a few friends to celebrate how well she has managed her diet over the past year. Sometimes you have to splurge 🙂
If you are a parent of a child with celiac disease and have questions about our experience, please don’t hesitate to send me an email!
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by Lisa Edwards, Ph.D | Nov 12, 2017 | Celiac Disease |
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: hopenotesformoms@gmail.com
*Here are two helpful organizations/websites with information about celiac disease:
Celiac Disease Foundation
Beyond Celiac
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