Toni Sumpter thought the anemia and fatigue she felt was a result of perimenopause, so she went to a nurse practitioner to see about hormone replacement therapy.
The tests showed a surprising result: Sumpter was sensitive to gluten, a protein composite that is found in wheat and some grains. Gluten gives elasticity to dough and helps it rise and keep its shape.
An estimated one in 100 people worldwide have celiac disease, an autoimmune disorder in which gluten leads to damage of the small intestine. About 2.5 million Americans have celiac disease but are undiagnosed, according to the Celiac Disease Foundation.
When someone has celiac disease and eats gluten, his or her body creates an immune response that attacks the small intestine. This damages the villi, which are small fingerlike fibers on the lining of the small intestine. The villi allow the body to absorb nutrients. Those with untreated celiac disease have damaged villi and no long absorb nutrients as their body should.
Sumpter’s sensitivity was discovered through a blood test, though she did not have the endoscopic biopsy that officially confirms celiac disease.
Sumpter immediately went on a gluten-free diet and began to take an iron supplement. Her iron levels went up and she felt more energy.
“It definitely made an improvement,” she says.
Sumpter didn’t have some of the traditional stomach and gastric issues associated with celiac disease. Others can experience bloating, gas cramps, weight loss, anemia, headaches, leg cramps, acne and more.
That was the case for Erin Jones. She suffered from gas cramps and bloating for years — she thought reactions to things such as onion rings were a result of the onions, not the breading — which she thought were her main symptoms of gluten intolerance. She also had anemia for years and had to take iron and Vitamin D supplements. It wasn’t until she went on a gluten-free diet that she realized her headaches, canker sores and acne also were caused by it.
“I’m just amazed at how many things have improved,” she says.
“I often think I probably had it when I was very young, but it was probably silent then,” says Jones, whose diagnosis was confirmed with an intestinal biopsy.
That’s likely true, says Barb Huyette of Clive, chairperson of the Central Iowa Celiac Connection.
Only about 10 percent of people have classic symptoms of celiac disease — the diarrhea, bloating, weight loss and constipation that are often associated with it.
“The rest of them are called non-classic,” Huyette says. “Those are the people who fall through the cracks just like I did, and I’m a nurse. You think I would have known.”
If a person carries the gene, it usually takes a trigger of some sort to spark the disease. That was how Huyette learned she was gluten intolerant. About 20 years ago, she traveled to Europe where she ate lots and lots of French bread.
Everyone else gained weight; she lost 10 pounds. Within months, her fingers started to swell to the point she had trouble using them. She had a thyroid condition, which she now knows can be associated with celiac disease, and she had been anemic almost all of her adult life.
It wasn’t until an appointment with a fifth doctor that it was suggested she have a colonoscopy and an upper endoscopy to examine her gut and intestines. It showed that the villi in her upper bowl were almost flattened, which is why she had lost weight and wasn’t getting any nutrients.
“I didn’t know,” Huyette recalls. “I didn’t have any gut issues.”
For others, it can be an illness or having a baby that can trigger the disease.
“Triggers change your immune system, and you can no longer handle and digest gluten,” Huyette says.
Support group forms to help one another, share information about disease
Huyette’s diagnosis 20 years ago led her to a small group of 12 people who met in one another’s living rooms to talk about how they would live with celiac disease.
“It was too new to the public and dieticians,” she recalls.
The Central Iowa Celiac Connection has now grown to 1,000 families — some families have five children, all with the disease. Huyette has overseen the group for the past 16 years. They serve as a support group for celiacs, provide them recipes and information about restaurants where they can eat, share resources and research and organize potluck dinners. Some celiacs drive three hours to attend.
“It’s the one place people can come and eat whatever they want in the room,” Huyette says.
Gluten sensitivity means research, trying new foods
Huyette had a hard time making the transition to a gluten-free lifestyle. Food options were very limited 20 years ago. She had to experiment with different flours and ingredients that she remembers tasting bad. She couldn’t go out to eat. If she traveled for work, her only option for meals was often fruit.
“You go through periods,” she recalls. “At first you’re really depressed. Then you accept it.”
Huyette guesses she made close to 200 hours worth of phone calls to various companies through the years to learn about their products when she couldn’t decipher the label or there was no information on the packaging.
Sumpter researched what it meant to become gluten-free and found the book “Wheat Belly” to be a good understanding of how gluten affects people and can cause other conditions. It also encouraged her to switch to more of a whole foods diet where she focuses on fruits, vegetables and protein. She doesn’t eat the alternative gluten-free flours or mixes.
The change in diet helped Sumpter lose about 15 pounds that had crept on the past few years and made her feel better. Removing carbohydrates from her diet also stopped the fluctuation in blood sugar she would have throughout the day that would sometimes lead to munchies between meals.
“I no longer craved sweets after that,” she says. “I feel like a whole new person.”
For Jones, learning how to eat gluten-free was a challenge.
“It was really difficult,” she recalls. “It’s just overwhelming when you’re first diagnosed. I think just learning to change your diet is the hardest thing.”
She learned that bread products were off limits, which was difficult for her. Cheap meals at Mexican restaurants were no longer an option because of the wheat tortillas. Her family loves spaghetti and chili with cornbread.
“A lot of people are like that,” Huyette says. “They don’t want to give up pasta and bread. As long as they don’t have overt symptoms, they don’t want to get tested.”
Jones learned to make the adjustments and found food products she and her family liked. She uses gluten-free flour to make her cornbread and now cooks with gluten-free pastas. She’s also learned to eat more natural, whole foods — more fruits and vegetables — so the family gardens. Frozen berries are a common breakfast food. She’s substituted almonds and cheese for a snack instead of crackers.
“The food is getting better,” she says. “Bread is the hardest thing. There are a lot of types, but most aren’t good and don’t compare to a regular slice of bread.”
Jones has the occasional slip-up. She went to a picnic where there were hamburgers, but she hadn’t had time to buy a gluten-free bun or make something, so she ate a regular bun on her hamburger. She had stomach cramps for three days.
“Sometimes you just get sick of eating a plain hamburger,” Jones explains.
Going out to eat can present its own set of challenges for celiacs. While many restaurants offer gluten-free options and prepare food so it is gluten-free, there can be a chance for cross-contamination or exposure to gluten items.
Sumpter has experienced joint pain sometimes after eating out, which she thinks is related to gluten exposure.
There is an enzyme supplement available in case of exposure, which Sumpter and others take as a precaution. It helps break down the gluten protein, so there isn’t a reaction.
Jones says she knows she needs to ask questions about the food when she eats at a restaurant, such as whether the French fries are fried in the same oil as breaded products. She mostly avoids going out, but knows there are restaurants where she can eat.
Celiac disease often runs in families; children of celiacs get genetic test
Celiac disease is hereditary, and those who have a parent or sibling with it have a one in 10 chance of developing it.
Sumpter’s mother was diagnosed about 15 years ago. Her 19-year-old daughter had the gene test, which showed she’s at risk for developing it as well.
Jones’ mother also was diagnosed with celiac disease, which is what made Jones get tested. Her mother had been very sick.
“I figured I must have it, but I didn’t want to have it,” she recalls. “I waited a few years to get tested, but my symptoms got worse.”
Jones’ daughter had the genetic test and carries the gene.
Huyette said celiac disease is almost becoming an epidemic. Media reports about the disease have led to people recognizing the symptoms and being tested. Doctors now recognize the disease in patients — irritable bowel syndrome patients at a local clinic are now tested for celiac disease.
Some people have non-celiac gluten sensitivity — they experience gut issues and some of the same symptoms of celiacs, but their blood tests and biopsies are negative.
Huyette’s daughter has had her blood tested four times, all with a negative result. A gene test indicated her daughter carries the gene; however, carrying the gene doesn’t necessarily mean one will get the disease.
“That’s what’s so tricky,” Huyette says.