Cynthia Kupper’s Story: From a Celiac Disease Diagnosis to 25 Years Leading GIG
Published May 2021
Discovering you have celiac disease at any age can be a shock. For Cynthia Kupper, who learned she had celiac disease in her 30s, that discovery changed the entire course of her career.
As a diabetes educator for Saint Joseph Medical Center in Tacoma, Washington in the 1990s, Cynthia knew how important the role that diet and nutrition played in addressing specific health conditions. It was at the time that she began experiencing concerning health issues of her own: an infection that wouldn’t clear for months, leg cramps, diarrhea, and weight loss.
Cynthia spent two years in and out of her doctor’s office, trying to figure out what was wrong with her health. Like so many people with undiagnosed celiac disease, her healthcare provider misdiagnosed her, dismissed her weight loss as an “eating disorder,” and pointed to stress as the cause of her physical symptoms.
After lunch one day at work, Cynthia ended up in the ER with severe pain and bloating. She was admitted into the hospital with suspected Crohn’s disease. A doctor ran some tests, and the results came back positive for celiac disease.
An Introduction to Gluten Intolerance Group
After her diagnosis, Cynthia continued to work as a hospital dietitian and quickly became the “resident expert on celiac disease.” While seeking more information about celiac disease, she connected with Elaine Hartsook, Ph.D., RD, was working as a research dietitian at the University of Washington.
In 1974, Elaine created a support organization called the Gluten Intolerance Group of North America (GIG) for people with celiac disease — which was considered to be a “rare genetic disorder.”
Elaine was considered one of the foremost experts on both celiac disease and the gluten-free diet. In fact, she was the first dietitian to write a gluten-free diet for the American Dietetic Association, now the Academy of Nutrition and Dietetics.
Cynthia recalls being at her first Washington State Dietetics Association conference shortly after her diagnosis with celiac disease and asking about the meal being served to attendees. One of the dietitians looked at her and asked, “Aren’t you the picky one?”
“I was mortified. At that time, I wasn’t speaking up for myself yet, but Elaine helped set things straight,” Cynthia says. While she had been a diabetes educator for years, this was the moment she learned what it felt like to self-advocate.
Following that experience, Cynthia decided to volunteer with GIG while continuing to work as a hospital dietitian. Over the next couple of years, Cynthia set up a GIG support group in Tacoma and helped Elaine at meetings and conferences. During that time, Elaine’s mother was the organization’s bookkeeper, and GIG “staff” was a volunteer board that consisted of a handful of women. GIG was mostly funded by selling copies of a gluten-free cookbook that Elaine wrote.
Cynthia didn’t know at the time that Elaine was very ill.
“Elaine called me one day and said, ‘I need you to come and see me.’ She gave me a milk crate full of papers and a set of keys and said, ‘You’ll need these.’ She died three days later.”
Cynthia was presented with the opportunity to continue Elaine’s work heading GIG. Timing was everything, and Cynthia happened to be in a position where she could step back from her career in diabetes education. She decided to take a leap of faith and follow in Elaine’s footsteps as the leader of GIG.
Throughout her career as a hospital dietitian, Cynthia worked on a number of projects that held her interest. From her diabetes education role to running diabetes camps for kids, her background provided relevant experience to take the reins and build GIG into the national organization that Elaine had always dreamed of.
In 1996, Cynthia became the Executive Director of the Gluten Intolerance Group.
A Personal History of Health Issues
While Cynthia was not diagnosed with celiac disease until her 30s, she can look back and see what she now recognizes as reactions to gluten.
Cynthia says she was anemic as a teen, but doctors wrote her anemia off, telling her, “Oh, you’re a girl.”
“While I was pregnant, I didn’t gain a lot of weight, doctors were constantly hounding me to eat because they were concerned. I was healthy, but I just wasn’t gaining much weight,” Cynthia recalls.
“By the time I was diagnosed, I had what was known as ‘classic’ celiac disease,” Cynthia says. “I had lost a lot of weight. I was very anemic, suffering with diarrhea, muscle cramps, and I just kept losing weight, no matter how much I ate.”
Today, Cynthia is healthy. Looking back, she believes she had celiac disease when she began showing signs of anemia at a young age. When she was diagnosed, Cynthia was the only one in her family diagnosed with celiac disease. Over time, several other family members discovered they had various forms of gluten-related disorders.
Living Gluten-Free in the 1990s
When Cynthia was diagnosed, celiac disease was still considered a rare disease. In the United States, this meant that, according to statistical data, fewer than 200,000 people at that time had celiac disease.
Gluten-free food was even rarer. She recalls that, in the early 1990s, there were only a few companies that offered anything gluten-free. Ener-G Foods and Bob’s Red Mill were two of them. The former produced some of the first commercially available gluten-free bread. The latter provided GIG with xanthan gum. GIG worked with both companies dating back to the 1970s.
At the time, if you wanted to make gluten-free bread, you had to make your own gluten-free flour blend. To do so, you needed xanthan gum, however, the only way to obtain it was in large, 50-pound bags. One of the ways GIG supported people with celiac disease back then was to purchase bags of xanthan gum and divide them into smaller packages to sell to individuals.
GIG has always been at the forefront of gluten-free education. The first food science myth GIG worked to overcome was vinegar and the fears that it was not gluten-free when derived from gluten-containing grains.
“I can remember that we avoided all vinegar except apple cider vinegar, because the science we know today was just not available” Cynthia recalls. “I literally pulled out my grandmother’s cookbook from 1940’s so I could make ketchup.”
Gluten-free packaged food options were so scarce in the early 90s that Cynthia remembers trying to create new recipes. She learned to make corn tortillas work for just about anything, including desserts. She ground rice to make flour, and tried to figure out how to make rice flour more palatable because it was so grainy.
“And rice cakes. I ate so many rice cakes,” Cynthia laughs, re-emphasizing that there were very few gluten-free options back then. “When dietitians weren’t sure if a food had gluten, they erred on the side of caution and cut it completely from one’s diet. There were a lot of restrictions in early gluten-free diets.”
“It took years and years to help people understand that distillation actually removes the [gluten] protein. Fermentation does not,” Cynthia explains. “I think we spent 10 years just trying to break that myth. Then the next one was oats – and it’s still controversial. And we finally realized that buckwheat was not actual wheat; it comes from the rhubarb family.”
Making Changes at Gluten Intolerance Group
From the start, GIG was set up as a national organization, yet many of the organization’s activities were locally-based. When Cynthia took over GIG, she set out to run GIG on a more national scale.
As GIG expanded their educational efforts, the organization moved offices from Seattle to Burien, a suburb of Seattle near the airport. Cynthia ran the organization out of the new office with long-standing volunteers.
One of the first big changes she and the GIG volunteers made was to set up support groups across the country. A GIG board member from Virginia set up one of the first support groups outside Washington, followed by one in Oregon, and another in Texas.
GIG held annual consumer and leader conferences across the country to further educate people about celiac disease. Additionally, GIG began working with summer camps for children with celiac disease, one in Washington and a second in North Carolina, to serve children on both coasts. GIG still works with these camps today.
In the early 2000s, a member of GIG who was struggling to find safe food for his daughter who had celiac disease, suggested there should be a gluten-free certification process and mark similar to the Kosher certification mark on food packaging. This was the seed to the idea that became the Gluten-Free Certification Organization (GFCO).
“We spent two years creating the program, making sure everything scientifically was accurate,” says Cynthia.
Cynthia started working with restaurants to make sure people with celiac disease could go out to eat safely. GIG’s first big client was Outback Steakhouse, followed by their sister restaurants, Bonefish Grill and Carrabba’s Italian Grill. After some early successes in partnering with restaurants, GIG decided to take over an existing program called the Gluten-Free Restaurant Awareness Program (GFRAP) to serve restaurants.
Through this effort, GIG ran the Chef to Plate awareness campaigns that partnered with restaurants that offered gluten-free menus. During Celiac Awareness Month, GIG would set up table tents at these restaurants with educational information about celiac disease.
Eventually, GIG converted the GFRAP and restaurant programs into the Gluten-Free Food Services (GFFS) program which is still running today. GFFS validates “safe spots” that provide safe gluten-free options. “GFFS is an exciting program, with a new GFFS Coach Program that has the potential to really grow,” says Cynthia.
As for GIG’s education and support, these efforts continue today. With more people adopting a gluten-free lifestyle than ever before, and for reasons beyond celiac disease, Cynthia sees that the need for local level support is more than important than ever. She hopes to support individuals living gluten-free across the globe by expanding the international reach of GIG programs.
Seeing Changes for People Living Gluten-Free
For consumers, Cynthia says a medical therapy – a pill – is pending for people with celiac disease.
“We know that the diet is the best and only answer we have right now for treatment,” she explains. “There are some medical therapies on the horizon that have the potential to make life easier for people living gluten-free.”
Yet Cynthia says that living gluten-free is not going away. Even if medication becomes available for people with celiac disease, Cynthia believes people will still chose to eat gluten-free and will continue to need education and support.
“It has become a lifestyle for many people, just as organic or keto” Cynthia points out. “People who choose to eliminate gluten from their diets without a medical reason are the largest group of gluten-free consumers. Our research shows that many certainly feel better when living gluten-free.”
One of the biggest challenges those living gluten-free face, Cynthia shares, is affording gluten-free products.
“I believe there is an opportunity in the industry to help reduce the cost of foods that are gluten-free, because so many people who need it, simply can’t afford it.”
Cynthia says reducing the costs of gluten-free foods will take some work. Most companies that sell gluten-free products charge higher prices because of the higher costs of specialty ingredients and cautious manufacturing practices. However, there are some companies that have already made a commitment to price their products at lower rates so more people can afford them.
GIG wants to help individuals and families who are struggling with the cost of gluten-free foods through a new initiative, Cutting Costs. This program will help those in need by supplying gluten-free coupons, food vouchers, and eventually food packages to those with gluten-related disorders.
Cynthia adds “I think there is an opportunity for insurance to cover celiac disease and other gluten-related disorders education, just like diabetes education.” She hopes insurance companies will begin offering more comprehensive support for people with celiac disease and gluten-related disorders.
Cynthia points out an added barrier to getting diagnosed with celiac disease and getting proper treatment is the cost of healthcare.
“People who don’t have money or insurance tend not to get tested, and remain sick,” she says. There is much work still to be done to ensure everyone has access to the medical care they need, regardless of cost.
Advice for Living Gluten-Free
Cynthia has several tips for people who have been diagnosed with celiac disease.
First, she recommends that people learn to cook.
“There’s so much more you can do if you know how to cook. Being able to simply modify recipes, opens the door to more healthy meal options,” she says. “I like to make simple gluten-free meals that don’t necessarily take special products. I like to buy masa and cornmeal, vegetables and beans, and then I can make all kinds of things inexpensively.”
As a dietitian, Cynthia emphasizes the importance of a well-balanced diet.
“A colorful plate, lots of fruits and vegetables, and good proteins, because we know that a gluten-free diet, in and of itself, is often not nutritionally complete. The diet is lacking in B vitamins especially – that’s what you get from grains. Finding other sources for them is really important,” she says.
For parents of newly diagnosed children, Cynthia offers some words of wisdom and suggests being careful not to hover or be over-protective of your child. Teach them to make educated decisions about their food choices.
“We know from the diabetes world that overprotected children often become rebellious and resist making healthy choices. Children who are gluten-free need to be able to follow a gluten-free diet on their own and make healthy choices, so they don’t increase the risk of other health complications later in life,” she explains.
Finally, she says one’s attitude is important.
“Don’t let the disease define you or consume your life,” she says, “Be a person first.”
Cynthia follows her own advice. She is a person first, and she is a leader in the gluten-free community, striving daily to make life easier for everyone living gluten-free.
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