Straight Talker: Celiac Disease
CNN's Heidi Collins speaks out about celiac disease
Celiac disease, a genetic autoimmune disorder, is a hypersensitivity to gluten, the protein in wheat, barley and rye. With symptoms that can mimic many other health conditions, millions of Americans (about 1 in 100) have the disease but 97 percent remain undiagnosed. For years, Heidi Collins was one of them.
The popular television anchor of CNN Newsroom, Collins is a serious journalist who covers hard topics every weekday morning. Her no-nonsense style makes her a reliable and widely respected voice on cable TV.
Collins, who joined CNN in 2002, lives in Atlanta with her husband and their two sons, Riley, 9, and Owen, 2. She is an outspoken advocate for the gluten-free community who served as spokesperson for the National Foundation for Celiac Awareness up until the birth of her second child. Balancing motherhood with a demanding career keeps Collins very busy but she recently took time to talk with editor Alicia Woodward about living gluten free.
When did you learn you had celiac disease?
I was officially diagnosed about five years ago but I was sick with all the typical stomach symptoms for a very long time before that. In college, I remember having to leave parties and events early because I just didn’t feel well and wasn’t ever able to stay all the way through. That continued after I got married. My husband and I would attend events together but take separate cars because I knew I couldn’t last. I lived with symptoms probably a good 15 years before I was diagnosed.
What finally got you diagnosed?
When I transferred to New York City for CNN, there was a lot going on—the move, the house, the school system, two 100-pound yellow Labs in a New York apartment—and my condition grew significantly worse. At first, I just passed it off to stress. I’d seen lots of doctors, had tons of tests, and they all said I was a type A person and when I got stressed, it went straight to my stomach. But after a while, that just wasn’t enough. I was really sick. So I went to an internist near our new home. He asked me some questions and said, “I think you have celiac disease.” He sent me to Columbia University and Dr. Peter Greene at the Celiac Disease Center tested me and confirmed the diagnosis.
With years of chronic GI issues, no one ever suspected celiac disease?
Back in 1997, I developed a blood clot that came out of nowhere. It was very serious and I was in the hospital for four months, including nearly a month at the Mayo Clinic. Long story, but the clot ended up in an artery and it wouldn’t dissipate despite heavy doses of blood thinners. This eventually led to an intense 6-hour surgery. There were five different teams of specialists on my case with sometimes two to three blood draws a day. Tests pointed to an autoimmune problem. Doctors said lupus, antiphospholipid antibody syndrome and on and on—but nobody ever considered celiac disease. But before all that, I lost a pregnancy at 7 months due to placental divide. Looking back, there is no doubt in my mind that it was due to celiac disease and my inability to absorb nutrition.
You now have two little boys. Are they eating gluten free?
Riley, the oldest, tested positive for celiac disease so he’s gluten free. Thank God we caught it early. He’s fantastically healthy and handles the diet so well. I feel very lucky.
What about Owen?
Owen is quite a story. Given my blood clot and years of untreated celiac, I was advised that I couldn’t carry another baby. This was very upsetting. It was a long process, a lot of discussion, but the bottom line was, we wanted another child. So after tons of planning and thought, we used an egg donor and surrogate. We’re very blessed to have a beautiful little boy.
You have a high-profile job where you’re traveling quite a bit. Is it challenging to adhere to the diet?
Travel can sometimes be difficult. I carry my own food everywhere. I worked on a story where I knew it was going to be a long shoot with nothing available but fast food, which is next to impossible for me. The producer and I had planned to drive there together and she shows up in this itty-bitty car—there was barely room for my cooler. It was really funny. Needless to say, there was a lot of talk about celiac on that drive. I am not shy about this. I was on an aircraft carrier overnight, interviewing high-ranking Navy officials. I told them I appreciated being invited but we were going to be out in the middle of the ocean and I had to have food that was safe and wouldn’t make me sick.
And what was the response?
I have never, ever had anything but complete cooperation and concern. But dining out in a restaurant, that’s a different story.
Some well-known chef at some upper-crust restaurant will look you in the face and say, “Of course, I know what gluten free is.” Then in the same conversation he confuses gluten with glucose and I know instantly I’ll have to question every single thing that comes out of that kitchen. In rare cases, we leave but I’m more interested in teaching people and increasing awareness. Again, I’m far from shy. I’m happy to go back into the kitchen, which I’ve done before, to explain cross contamination. I always relate it to a peanut allergy. Just because it’s not anaphylaxis doesn’t mean that you don’t take it seriously. I don’t want to have to call you at 3:00 in the morning when this hits me and I’m so sick that I can’t function for a couple of days.
What’s been your biggest challenge?
I’m really frustrated with the airlines and airports. I think they should somehow be the next focus of a gluten-free movement. I carry fruit and almonds with me but that’s not enough when you’re traveling all day and your flights get cancelled several times. You end up eating a salad with questionable dressing. It’s just not good enough. There should be safe options.
Sometimes I'm lucky and I find a deli place and ask them to help me out, change their gloves, that sort of thing.
So you actually educate the staff at sandwich shops?
Yes, this just happened. The people there were very nice. I asked them to change their gloves and not to put my meat directly on the counter or cutting board. Then I stood there and watched them like a hawk. I had a slice of fresh turkey, a piece of cheese, some potato chips, a piece of fruit and I was good to go.
Looking back, what do you wish you’d known?
I wish I’d been diagnosed during the blood clot ordeal, ten years earlier than I was. All those brilliant doctors missed it. Then I look back at all the angel food cake I ate, all those Asian dishes with soy sauce....
What are your favorite foods now?
There’s so little that we don’t eat. Most of our cooking is naturally gluten free. We are definitely meat eaters—we enjoy marinated steaks. I’d be lost without my gluten-free soy sauce. I cart that damn bottle around with me everywhere. [Laughs.] I have to tell you that I’m encouraged by the gluten-free products out there. Some of them are great. I know what I like and I know what I don't like. My little guy rarely complains—and if somebody was going to complain, it would be the young child, right?
What advice would you give others?
If you have celiac disease, do not be shy. Tell the people who give you food what you need in the most polite and assertive manner. You really have to fight for yourself and your health. LW