Advice from 20 Years of Life with Celiac Disease
Cynda Felini was busy making plans for her upcoming wedding when she noticed a festering, itchy rash on her body. Her doctor prescribed antibiotics for what he diagnosed as acne. Felini didn’t buy it. The intense, painful itching she describes as making her want to “peel my skin off” didn’t jibe with her experience with acne.
After a string of misdiagnosis, Felini began her journey with celiac disease and, subsequently, gluten-free living. In a phone interview from her home in Texas, she shared what she has learned from two decades of research and personal experience.
Q. First there was your skin issue, then you started having digestive issues, right?
A. Yes. I knew then I was going to have to quit gluten 100% if I was going to get healthy. The doctors weren’t quite ready to give me a celiac diagnosis at that point, but they were pretty sure I needed to stay completely off gluten.
Then my son was born in 2008. Not knowing for sure what all the issues were and how genetics would play into it, I decided to keep his diet gluten free until he was about two-years-old. When I did introduce gluten into his diet, he started having issues. By that point, it was 2010, maybe 2011. There was so much more known about celiac disease by then. They were able to diagnose him with a gluten intolerance, but it hadn’t developed into full-blown celiac disease yet though.
Q. But it still could?
A. Well, what I’ve been told is that it is genetic, and he will one day have full-fledged celiac disease if he doesn’t remain gluten free. He’s 14, and he’s been 100% gluten free for about 10 years now. The hope is he won’t have the health issues I developed because of all of this.
Q. It sounds like for both you and your son, diagnosis was more of a process. It wasn’t like one day you were told you have celiac disease and you need to drop all the gluten. But still, that’s a huge thing to navigate. What were the biggest challenges for you and for him when you decided it was time to cut gluten entirely?
A. You know, it was figuring out all of the words that mean wheat and gluten, right? I mean, there are so many of them. Natural flavorings. Anything that has “natural flavorings” listed as an ingredient might have wheat. And all of the things that might be cross-contaminated.
Then you get outside of food where gluten has completely different chemical names. It’s in hand lotions and shampoos, conditioners and makeup. And, you know, even when you read the ingredients, you don’t know if you’re encountering gluten or not.
Q. So, how do you handle that?
A. It’s very much a trial-and-error thing. You put something new on your skin and start reacting. So, you get some Dawn soap, wash it off, and you know you can’t use that product again. You have a meal you thought was safe only to find you’re not feeling well. Then you’re going down the list. What did I eat that was new? Was there something I’ve had an issue with before? Very much of a trial-and-error situation. I have a long list of products and companies that I know for a fact to be safe.
Q. I know you have helped people who are newly diagnosed start to figure out what they can eat and how to cook. Did someone do that for you?
A. My mom has always been a very whole foods cook. So, she helped me a lot. She really helped me take it back to the basics. I just learned to cook ordinary, basic food. We thought about fresh meats and vegetables. Even with frozen foods, you have to be careful with the ingredients in them. And we didn’t use a ton of store-bought seasonings. Just your basics: salt, pepper and a few things like Italian seasoning, but not like your Lipton Soup Mix, right — which I loved using before.
She was very helpful in just helping me eat healthy. Because you have to eat healthy to heal yourself. With celiac disease, your body hasn’t been absorbing nutrients the way it should, so it makes eating healthy even that much more important.
Q. What’s your best advice for someone who has just gotten a celiac diagnosis and is trying to figure this all out?
A. It’s going to take a full six weeks before your gut starts healing. No cheating whatsoever. Stick with the 100% gluten-free diet. The first three or four weeks are going to be the hardest. But around that six-week mark, your intestinal tract is going to start absorbing nutrients again, and you will start to feel better.
