On a recent morning, Lodi resident Stacy Lister held up a plate of chocolate chip cookies she made along with her daughter, Amaris. The cookies are not just your average chocolate chip cookies. Instead of traditional flour, they are made with potato starch, brown rice flour and xanthan gum.
Traditional flour is substituted with these items because Amaris is unable to eat gluten, a protein found in specific grains. Amaris, now age 6, was diagnosed three years ago with celiac disease, the most severe form of gluten intolerance.
She is among a growing number of people who are getting diagnosed with celiac disease, a condition that most doctors are just now starting to understand.
What is gluten and who does it affect?
When Amaris was 2 years old, Stacy and her husband, Brad Lister, began noticing several changes in her. She developed mouth sores and had puffy skin and a distended stomach. She began misbehaving. She was irritable and uncooperative. She seemed withdrawn and lacked energy. She couldn't run around outside without running out of breath, Stacy said.
This went on for a year before Amaris was tested for celiac disease.
"We were at a loss for what was wrong," said Stacy. "You can't pinpoint it and you think, 'Why is my child misbehaving?'"
Others can be sensitive to it without resulting in damage to the intestine, she added. Some have suffered with it for years before they know what is wrong. Kerry Teravskis, 48, of Acampo, has had health issues her whole life. As a child, she developed rashes all over. She was allergic to a lot of different foods at the time, but eventually outgrew it. For this reason, many doctors believed she had a childhood disease.
"When you hit puberty, there are so many different things going on," she said.
Throughout her adult years, she experienced extreme fatigue, joint pain, nausea and migraines every day that persisted the whole day. She also had a skin rash on the top of her hands that was painful and irritated. After finally being tested for celiac disease 4 1/2 years ago, Teravskis said she feels better. The hardest part was finding a doctor who would test her for the disease, she said.
"It's real difficult because no one believes you. You feel like it's all in your head," she said.
Timaree Hagenburger, a local dietitian who teaches hands-on nutrition classes at Hutchins Street Square, points out that since there has been a growing awareness about the disease, many people are getting diagnosed later in life. Dr. Waleed Ibrahim, a Lodi gastroenterologist, said there has also been improved testing, which has resulted in an increase of patients diagnosed with celiac disease.
Gluten can be found in products such as barley, bulgur, rye and anything labeled wheat, such as wheat bran or wheat germ. It is in food items such as bread and pasta, but can also show up in other foods such as cold cuts and salad dressings. Gluten is only harmful to those who have an intolerance to it, said Hagenburger.
"Some people have no problems with it," she said. "The most severe is celiac disease, which is permanent intolerance, and it results in damage to the intestine."
Several studies have revealed a significant true increase in the disease in the past 30 years. It is believed that an unknown environmental factor might be playing a role in the increase, said Ibrahim.
Doctors have also had trouble diagnosing people because there are so many different symptoms. Often, doctors might think patients have Crohn's disease or irritable bowel syndrome.
"The severity of symptoms can vary from very mild to severe. As such, celiac disease is a very tricky disease and can mimic other conditions," Ibrahim said. "The diagnosis of requires a high level of clinical suspicion, knowledge and experience."
Sandy Goehring, 40, is one of those cases. She has had ongoing health issues her whole life. She has always had an aversion to milk. After cutting it out of her diet, she still didn't feel well.
Every night, Goehring dealt with heartburn and a persistent upset stomach. She was exhausted all the time and struggled with losing weight. She also experienced muscle cramps.
"I'm kind of a high-energy person and was so tired. Not having energy was not working for me at all," she said.
At age 35, she ended up in the emergency room. Her bloodwork came back showing she was malnourished, and a doctor told her she had IBS. After hearing about friends who had a gluten intolerance, Goehring decided to give up gluten. She began eating more vegetables and meats and immediately started feeling better.
"I had a lot more energy and I lost five pounds in five days. And I'm not sick to my stomach," she said.
Symptoms and problems
Symptoms of celiac disease can be all over the board, Hagenburger said. It is an autoimmune disease that affects one percent of the population, or about three million people.
Symptoms for some people may be only gastrointestinal, such as diarrhea, abdominal pain and distention, anorexia and constipation. Others may develop dermatitis, osteoporosis, anemia, chronic fatigue or have dental enamel issues. Some people are diagnosed with malnutrition and then find out that it is because of celiac disease.
"Many struggle with it for years and don't know what it is," said Hagenburger.
Celiac disease flattens the villi in the small intestine, which dramatically reduces the body's ability to absorb nutrients, she said.
Villi are hair-like projections resembling a wheat field on a microscopic scale, Ibrahim explained. In celiac disease, the villi are damaged which leads to flattening of the small intestine surface. Instead of resembling a wheat field, it is now like a flat barren dirt field, he said.
The villi work to help absorb vitamins and other important nutrients from the food. As a result of celiac disease, the body is unable to absorb those nutrients, which leads to patients becoming malnourished, he said.
"If you truly have celiac, it's very important to avoid (gluten)," said Hagenburger.
A genetic disease
For those diagnosed with celiac disease, there is a one in 17 chance that a family member will have it, said Hagenburger.
Stacy Lister was tested once her daughter was diagnosed. Her tests came back negative but showed that she is a carrier of the disease. Since she has gone gluten-free, Stacy has found that her aching joints and mild depression have disappeared. Symptoms can reappear within a few days if a person becomes "glutenated," a term both Teravskis and the Listers use after consuming gluten.
Now, if Stacy eats gluten she gets all the same symptoms as her daughter.
"If I had continued eating gluten, I would have developed celiac disease eventually," she said.
Teravskis' three children have suffered many of the same symptoms she had. All three of them had skin rashes. One of her daughters had the migraines. Her son dealt with brain fog and had trouble concentrating. He also got sick all the time after eating. She knew without a doubt that they, too, had celiac disease. Since Teravskis had trouble getting diagnosed, she decided not to put her children through the testing process. She took her whole family off gluten. Her children's symptoms went away immediately.
"That just isn't normal behavior," she said. "They were the mirror image of everything I had."
The first thing people should do if they feel they may have a gluten intolerance is to record everything that they eat, Hagenburger said. Keeping a log of everything that is eaten, along with symptoms, will help a gastroenterologist see a pattern, she added. It's also very important to not eliminate gluten from the diet prior to getting tested because the test could come back negative.
"It's one of those things where you need to be in the heat of it to get a good diagnosis," Hagenburger said.
A gastroenterologist will do three tests to determine the disease. The first is a genetic test to see if the person is a carrier of the disease. Next, bloodwork is done, and then an endoscopy or biopsy.
Ibrahim says it is important to have a confirmation of a diagnosis in order to start therapy and avoid other complications.
"Left untreated, celiac disease can potentially lead to malnutrition, osteoporosis and neurological disorders such as peripheral neuropathy and small intestine malignancies," he said.
Stacy Lister said that after Amaris' bloodwork was done and she was taken off of gluten, she and her husband immediately noticed changes in her. The changes were like night and day.
"She was the little girl she should have been. It felt like we got our daughter back," she said.
In order for the biopsy to detect celiac disease, Amaris needed to be eating gluten, the Listers were later told. So the two put her back on a diet containing gluten.
The tests to determine the diagnosis shows the damage and flattening of the villi on the intestinal surface.
Eating a gluten-free diet prior to testing can lead to a falsely normal result, Ibrahim said.
Making life changes
Celiac patients can reverse any damage that has been done by completely cutting out all gluten, Hagenburger said. Besides fruits and vegetables, she recommends adding beans, dairy, buckwheat, millet, quinoa, brown rice, soy and tapioca to the diet.
Many ready-made shelf products that say "gluten-free" on the label are high in calories. For this reason, she warns against eating an overabundance of those products.
"That's the biggest misconception... people assume gluten-free means healthy, so they will eat a ton of it," she said.
Instead, she recommends filling half of the plate with fruits and vegetables as well as a grain the person can tolerate. Only about a quarter of the plate should be a grain, Hagenburger added.
It's all about going back to the basics for both the Listers and the Teravskis. They don't go out to eat anymore. If they go to other people's homes for dinner, they bring their own food, even to Thanksgiving with their family.
Gluten-free food has to be kept separate because if it touches food with gluten in it, it can become contaminated, Brad Lister explained. For this reason, their kitchen needed to be cleaned out of its original contents.
Stacy Lister said many families will do a shared kitchen, where they have two of everything such as toasters and other appliances. They decided it was easier to get rid of everything such as their cooking utensils, non-stick pans and all the spices.
In the beginning, Thanksgiving dinners and children's birthday parties were the most challenging, Stacy Lister said. She often had to make a whole Thanksgiving dinner to take over to the homes of other family members. When Amaris went to birthday parties, Stacy tried to match what the other children were eating, which was tough.
Since then, her extended family has gone gluten-free, making Thanksgiving dinners a little easier. She has also found gluten-free cakes in the bakery, which she keeps on-hand in the freezer for children's birthday parties.
"It's really difficult because you want your child to feel normal," she said.
In the Teravskis' home, meal time has become a family affair. Together, the family found cook books and alternative flours, and began trying new recipes. It becomes a learning curve. If it doesn't taste good, they throw it in the trash.
"You just try it out and tweak the recipe on your own," Stacy Lister added.
Getting additional help
A gluten-free awareness day will be held on Aug. 4 from 9:30 a.m. to 3:30 p.m. at Sheri's Sonshine Nutrition Center. There will be different topics throughout the day, including how to make school lunches. There will also be partial cooking demonstrations, and other resources will be available.
The Teravskis and the Listers have started a celiac disease support group that meets on the second Monday of each month from 6:30 to 8 p.m. at the First Baptist Church of Lodi.
The support group provides resources on where to shop, and also hosts cooking demos.
It was a group the families formed a year ago and discontinued due to lack of attendance. After seeing more of a need in the community, the two families decided to resurrect the group. So far, there are 30 people on the list, Teravskis said.
Stacy Lister hopes the support group will help those newly diagnosed with the disease not feel alone. She also hopes they can still live as normal of a life as possible.
"It seems like every time you turn around you're telling your story and someone is telling you their story. It seems like everyone knows someone who has it," she said.
Two days after Amaris went gluten-free, Stacy Lister said she looked in her eyes and saw a sparkle there. And Amaris told her that her head didn't hurt anymore.
"I look back now and say, 'Wow, it was a long ride,'" Teravskis added.