Life StoryJune/July 2010 Issue

A Good GIG: Getting Behind
The Gluten Intolerance Group

Cynthia Kupper has long been an advocate for people with celiac disease, serving since the mid-1990s as GIG's executive director.


[Updated Aug. 10, 2015]

Cynthia Kupper

Cynthia Kupper advocates for people with celiac disease.

Cynthia Kupper, executive director of the Gluten Intolerance Group of North America (GIG), did not set out to become a leading force in the gluten-free community. A single mom who worked full-time as a clinical dietitian at a hospital in Tacoma, Washington, Kupper began volunteering at the nonprofit organization 15 years ago when it was a tiny group composed primarily of volunteers.

Today, under her tireless leadership, GIG has grown into a well-respected powerhouse that has launched nationally recognized, industry-standard certification programs for restaurants and manufactured products.

Recently, Kupper took time from her busy schedule to speak with Gluten Free & More.

We hear so much about GIG but let’s talk about you. You have celiac disease, right?

I do.

When did you first suspect there was an issue with your health?

I was in my late 30s when I developed an upper respiratory infection that wouldn’t clear up, even with antibiotics. From that point on, my health started to decline. I began having severe leg cramps, diarrhea, and other gastrointestinal problems. Over the next two years, I was at my doctor’s office several times a month.

My symptoms continued to worsen until I was jaundiced and my nervous system was shot. I had foggy brain syndrome. I was writing everything down because I couldn’t remember anything. There were times when I didn’t know how I drove the 30 minutes home from work. I lost a lot of weight, was very thin, and kept getting sicker. It got to the point that I became a "wall hugger." I would lose my balance so I hugged the walls as I walked down the corridors at work.

My doctor ran a lot of tests but couldn’t figure it out. The more I complained, the more he wrote me off as this whiny woman. I had just gone through a divorce so he told me I was stressed. Then he accused me of having anorexia and wanted to check me into the mental health unit. I was eating 2,500 calories and losing a pound a day. It was frustrating.

How did you finally get a diagnosis?

I’d eaten lunch with some friends and had returned to work. Half an hour later, I was in the hospital. My doctor thought I had Crohn’s but it turns out I had developed pseudo-megacolon, where my colon was literally blocked off on two ends and I was blowing up like a balloon. The surgeon who treated me did blood work and a biopsy and, sure enough, I had celiac disease.

Cynthia Kupper

"I had no idea of what to do," Cynthia Kupper recalls when her doctor delivered her celiac diagnosis. "My mouth hit the floor when I discovered all I didnít know about this disease."

As a dietitian, did you understand the disease?

I had no idea of what to do. My mouth hit the floor when I discovered all I didn’t know about this disease. Now looking back, I can see I had symptoms even in my teens. I had always had iron deficiency anemia that never responded to treatment. I was never able to gain weight during my pregnancy and my daughter was nearly a preemie—and that’s when I thought I was so healthy.

How did you become involved with the Gluten Intolerance Group?

After I was diagnosed, I started volunteering for Elaine Hartsook, a research dietitian who was GIG’s founder. She had untreatable cancer and over the next couple years as she grew sicker, I tried to do more to help her. One Saturday, she called me to her home and handed me a carton of papers and a set of keys and said, “You’ll need these.” She died on Monday. †

Good Lord!

Up until that point, it had never occurred to me that she thought I could do this. I tried to keep my full-time job and manage GIG on the side but it just wasn’t working. I didn’t know what was going to happen to GIG. So in 1996, I made the decision to quit the hospital.

That’s a big jump for a single mother.

It was hard. I took a big pay cut and left behind medical benefits but I couldn’t let this organization die. I figured I could live simply, that I didn’t need much and I felt GIG had the potential to help so many people and it would help me, as well. †

It was a steep learning curve, running a nonprofit and taking on such a huge amount of work. There were a lot of sleepless nights. I remember thinking, I don’t know if I can do this. But I’m the kind of person who enjoys a challenge. I know I have a few more gray hairs but this job has made me stretch personally. Another thing is that in the hospital, I was helping people one at a time. GIG has a much wider reach.

It’s been 14 years and GIG has grown into a major force. How would you describe GIG’s services?

Basically, GIG has two arms of service. One is the direct touch to the consumer, which is our social programs, educational materials, conference, magazine, kids’ camps, things like that. The other is the secondary touch—our industry programs, including auditing and certification for restaurants, food services and products. They help make life and shopping easier for gluten-free consumers. †

There’re a number of different celiac groups out there. What’s your hope for the gluten-free community?

My biggest hope is that we learn to work together. We need to find a way to become a single voice or at least a united voice so that, for example, when we ask the government to support increased school lunch funding for children with special dietary needs, we have one strong, unified message. That’s where we really need to go as advocates.

What would you say to people who have celiac disease and to those who are newly diagnosed?

I would encourage them to get good information and to be open-minded about what we know about this condition—because what we know changes so rapidly. Don’t get stuck in the 1950s or 1990s. Look at the science. We need to listen to our best experts. For example, look at the fact that it’s okay to consume distilled white vinegar. Or look at recent developments in gluten sensitivity and gluten intolerance versus celiac disease. Truly what could happen down the road is that someone who is gluten sensitive may be able to tolerate a low-gluten diet that could not be tolerated by someone with celiac disease. If the science is there, we need to be open to that.

And I don’t know why ten years down the road we’re still discussing vinegar! [Laughs.]

Anything else you’d like to say?

Nonprofits are losing their volunteers. The old adage is true: it takes a village. I would encourage people to volunteer their time and skills to support the gluten-free community. It’s going to take all of us working together to get us where we need to be. We’ve come a long way but there’s still a long way to go.

For more information about GIG, visit gluten.org.

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