Q&A: What It's Like to Parent a Child With Celiac Disease

An interview with Gaby McPherson, RD, who's mom to a celiac child

Recently, I had the pleasure of interviewing Gaby McPherson, RD, a practicing dietitian, health and nutrition writer, and mom to a 5-year-old daughter, Charlotte, who has celiac disease. Gaby and I first connected last year when her daughter was diagnosed with celiac disease, and we bonded over our shared passion for educating people about healthy living.

I was so excited when she launched her website, Gluten-Free Children, a few months ago because it features nutrition advice for parents of celiac kids from a credentialed expert who has experience navigating celiac disease with her daughter. (You can follow her on Instagram too @gluten.free.children.)

Naturally, I had to interview her for my newsletter! Below is my Q&A with Gaby about how she’s navigating her daughter’s diagnosis, the most surprising things she’s learned about raising a celiac child, and how she’s hoping to help celiac families in the future.

Q: Tell me about your professional background as a dietitian.

A: I’ve been a dietitian for about 10 years now. I started as a biochemistry major in college and got into nutrition. I was dealing with my own weight struggles in college and joined a nutrition program. I learned so much about food and developed a healthier relationship with food.

I lost weight, got healthier, and got more into physical fitness. I thought, “Maybe I can help other people,” so I transitioned into a nutrition program at school and became a dietitian. I was able to start working in the community, helping people in low socioeconomic populations eat healthier with the resources they had.

I worked in public health for about six or seven years. During that time, at my health center, I was developing nutrition content and information for the employees because I was really into employee wellness and just generally helping people get healthier with what they have and not stressing out about healthy eating. I wanted to make it more realistic and practical for their own lives.

In the last year, my nutrition philosophy and my niche have transitioned into the gluten-free and celiac lifestyle since my daughter was diagnosed in March 2023.

Q: What was the process like to get your daughter diagnosed?

A: She’s 5 years old now, and I want to say when she was around age 2, maybe 2 and a half, she started complaining of belly pain. It seemed to get worse when she would catch colds, but that was really it. Her diagnosis was almost three years later because it just went on.

Anytime I would bring it up with her pediatrician, she just kind of dismissed it. Like, “Oh, you know, it’s probably nothing.” Even her GI doctor was like, “Oh, maybe it’s an anxious stomach.” But I know my daughter, and I knew something was wrong.

Just this morning, I was thinking back and reflecting on that time and how I knew something was bothering her. I knew it was something with food. I was thinking, “It’s got to be something that’s in everything because I can’t pinpoint it.” I asked myself, “What could I cut out just to figure out if this is going to be helpful?”

So when she was around 2 and a half years old, I switched her milk to lactose-free. It seemed to help a little bit, but her symptoms didn’t go away completely. Last year, she finally had an endoscopy to see what was going on. The gastroenterologist didn’t even think it was celiac disease. He said when he biopsied her, he just did a little bit, noting that if he suspected celiac disease, he would’ve done a lot more to check. Even he was surprised.

I was thankful to get the diagnosis because I knew something was wrong. If you haven’t experienced celiac disease with other family members before, it’s not on your radar. If you or your child are the first one to be diagnosed, you’re just not thinking about it.

Q: Since your daughter was the first one in your family to be diagnosed with celiac disease, did you get tested too?

A: After Charlotte was diagnosed, I did get tested for celiac. I also had my mom get tested because she’s had anemia. I also got genetic testing. I don’t have celiac disease, and I don’t have the gene either.

It was kind of like a moment of mourning for me—I almost wanted it because it would’ve given me some sort of answer as to why she was diagnosed. And when you’re a parent and you see your child going through this, you want to experience it too to help them not feel alone. So it was kind of a bummer to find out that I didn’t share this with her.

Gaby and her daughter, Charlotte

Q: How is your daughter feeling now that she’s been gluten-free for a while?

A: She’s doing so much better. The first thing I noticed when she switched to being gluten-free was that she wasn’t having belly pain as much. It gradually decreased until it went away completely. She has so much more energy too. Looking back, I realized that she was coming home from school pretty lethargic before going gluten-free.

I will say, there was a time when she did accidentally get glutened—and a new symptom, headaches—came up. That was interesting. I don’t know the science behind how the body reacts after being gluten-free for a little while and then getting glutened.

Q: Do you keep things gluten-free in your home kitchen or do you have a shared kitchen?

A: We live with my parents right now, so we do have a shared kitchen. I would say in the beginning, everyone was pretty much eating the same gluten-free bread and all of that stuff. But it’s so expensive, so now we have a shared kitchen and we’re just really careful.

The way our kitchen is set up, it’s not feasible to have two toaster ovens or air fryers. So we have to be careful about washing things and remembering that there’s no double-dipping in the butter. We have some rules in place.

The good thing is, our meals together are always gluten-free. But if people are just doing their own thing for breakfast or lunch, that might not make sense.

Q: Your daughter is in kindergarten now. How do you handle school?

A: I ended up creating a 504 plan for her. I was really nervous going into that meeting wondering what we could do to keep her the safest at school. But I was very surprised to find out the way schools operate and what they allow as far as celebrations go. They made it really easy on us, to be honest.

First of all, it was a huge blessing to find out the school placed her with a kindergarten teacher who also has celiac disease. It felt like a gift because they took that burden off my shoulders. I was so thankful.

Then when there’s a birthday, they don’t allow for outside treats to come in at their parties. They do non-treat celebratory items, like toys and little things like that. If there’s a holiday celebration or something like that, I keep a big bag of snacks for her in the classroom, which has been helpful.

The kids are also not allowed to share food or share their lunches. That’s a school policy. They can’t trade food or anything like that. So that keeps it easy. She also has full access to the nurse if she’s feeling any type of way, which has been helpful as well.

Since her teacher has celiac disease, if there’s a special treat that’s going to be given out to the class, she’ll send me the nutrition facts label. The open line of communication is super helpful because now I can look at it and see what’s going to be offered there. That’s been really great.

I just have to stay ahead of the calendar a little bit. Like if I see there are going to be popsicles on the playground, I’ll email and ask about the nutrition label. But it’s been going really well. And I’m proud of my daughter too because she often will check and ask if she’s not sure.

Q: What’s been the biggest challenge for you as a parent to a celiac child?

A: Navigating social situations is very hard. We had so many birthday parties after her diagnosis. We had one that very next weekend and even her own birthday party. We had to start packing our own food for parties, which was difficult for me.

The first time, I was like, “Okay, let’s just do this and go, it’s fine.” But then it hit me that this is our life now. We’re going to have to pack food wherever we go. I was always a packer of snacks for outings in general, but this is different when you can’t take part in what everyone else is eating. It can feel awkward.

But it gets better. I feel like I had to switch my attitude. I’m doing what’s best and what’s safest for my child and I will do anything to achieve that and keep her healthy and happy. This is just what we have to do to get to that place.

In social situations, I have to pay attention by looking at the food, asking if the gluten-free food can be kept separate, and watching if people touch that food after picking up regular food. There’s so much to be aware of. I can’t not pay attention. My eyes are always on if there’s a food component to a social gathering.

The cost of gluten-free food is another challenge, especially when I’m making stuff for everyone. I will often have people come to our house to do things so I can control everything. But then I’m spending much more money on all this food. It’s a double-edged sword.

I try to practice gratitude as much as I can and know that my story and the things I go through can help people and let them know they’re not alone.

Q: Tell me about your writing career, the website you launched for celiac families, and your newest business venture as a gluten-free coach.

A: I’ve been writing professionally for the last four years now in my business, Fruitful Nutrition. I love getting to dispel nutrition myths and informing people about different nutrients and nutrition trends because there’s a lot of confusion out there. I like getting to remove that confusion or overwhelm and giving people small, actionable tips they can do in their own homes realistically.

I write for various publications and different brands about a whole host of topics, but my background is more in pediatric nutrition. Anything from picky eating to constipation, I write about it. [Editor’s note: Gaby contributes to Saatva’s Sleep Enlightened blog, which I oversee as part of my day job!]

Now I have my own blog, GlutenFreeChildren.com, where I provide education and information on the gluten-free lifestyle for kids. My goal is to become a resource, coach, and support system—or to develop some sort of support system—for families with kids who have celiac disease.

In the beginning, especially post-diagnosis, there’s so much stress and uncertainty and fear about how these kids are going to grow up, how they’re going to feel about having celiac disease and eating differently from other people. I feel like there’s a huge gap in that diagnosis period when it comes to meeting with a dietitian or getting tailored guidance on what to do.

I’m in a lot of celiac groups on Facebook for parents, and there are so many people coming in there and their kids have just been diagnosed and they don’t know what to do. They don’t know where gluten is. They don’t know how to read labels. They’re confused, rightfully so, because reading labels is tricky.

I’d love to serve as a gluten-free coach for families and kids with celiac disease. I’ll be launching a private practice in 2024 so I can do this, and I’m excited.

If you’re interested in working with Gaby, you can reach out to her via the contact page on her website. And feel free to drop any questions you might have in the comments!