At her daughter’s high school graduation celebration, Brouse did something she had always done – she ate a bagel. But this time, the bagel sent her to the emergency room with a severe, blistering rash.
“It was just not a good time for something like that to happen,” said Brouse.
Brouse is one of a large population of people who suffer from Celiac Disease or related disorders.
Celiac Disease is an autoimmune condition where the consumption of the protein gluten, which is found primarily in foods containing wheat, barley and rye, causes an immune reaction in the small intestines and an inability to absorb certain nutrients.
Certain foods or products can send a Celiac Disease sufferer into spells of crippling stomach cramps, blinding migraines, breath-stopping chest pains or hospitalizing skin rashes.
Celiac Disease now affects about one in 100 people.
"Celiac disease is unusual, but it's no longer rare," said Dr. Murray, a gastroenterologist at Mayo Clinic in Rochester, Minn., referring to a study he conducted that showed Celiac Disease is 4.5 times more common than it was in the 1950s.
Gluten can cause a variety of different disorders ranging from gluten sensitivity, which has no autoimmune effect or long term damage to the body, to Celiac Disease, which can be extremely harmful or even fatal if not maintained with a gluten-free diet.
Kelly Quinlan, a 23-year-old with a diagnosed intolerance to gluten said one reason she won’t get herself officially tested for Celiac Disease is because she can’t afford the lifestyle.
“I don’t want to know I have that; then I actually have to follow the diet,” said Quinlan.
If proper precautions are not taken to stay healthy, those with Celiac Disease may find themselves with intestinal lymphoma, organ disorders, nervous system disease, unexplained infertility and many other complications. Some even end up toting around a colostomy bag.
David Bronkalla, Quinlan’s boyfriend, said people don’t realize that a gluten-free diet is not a fad diet; it’s a necessity for some people to make it through the day.
“I feel like some people eat gluten-free because they think it’s healthier,” said Bronkalla. “And it’s not really.”
Quinlan said she tries to eat gluten-free at least once a day to avoid the excruciating stomach pains caused by damage from gluten to the villi, the hair-like structures that absorb nutrients in the small intestines. But as a college student, working enough hours to afford the specialty foods and keeping up with her schoolwork and other necessary expenses is next to impossible.
She said spending “an arm and a leg” to eat entirely gluten-free, although something she would love to do, is not an option. Quinlan braves the crippling side effects to save money by purchasing regular, less expensive products.
"Price is more important than what you actually want to eat,” said Quinlan.
Celiac Disease is a hereditary condition but for some, the symptoms don’t appear until later in life.
Brouse suffers not only from Celiac Disease, but also from Dermatitis Herpetiformis, a skin condition causing severe rashes when gluten is ingested or comes in contact with the skin.
Prior to the weekend of her daughter’s graduation, Brouse had never experienced the external reaction to gluten. But she does recall having digestive issues that she attributed to other illnesses such as irritable bowel syndrome.
Brouse is able to keep the rash under control by taking Dapsone, a medication that was once used to treat Leprosy, but the digestive problems caused by Celiac Disease can be only be controlled by living a gluten-free lifestyle.
Celiac Disease sufferers struggle with leaving behind beloved food items, but often times, it’s the easy part. Shopping has proven to be the biggest struggle for people purchasing to eat or to live entirely gluten-free.
“The challenge comes in making affordable meals for your family and educating your husband that no, you still can’t eat macaroni and cheese,” said Kristen Piechowski, a 41-year-old mother of two from Rushford, Minn. who eats entirely gluten-free.
“I can’t afford to feed the entire family on what I eat,” said Piechowski.
Almost any item specially made gluten-free, will be substantially more expensive than its gluten-filled alternative.
“If you like pretzels, they’re actually pretty darn good, but they’re like $10 a bag. And you get a regular bag of pretzels and they’re like $2.99,” said Brouse. “It’s crazy.”
Those with a gluten intolerance struggle to find the time needed to read every ingredient label on everything they buy.
It may seem that after some time living a gluten-free lifestyle it would become easier and easier to just know what can and cannot be eaten or used, but as manufacturers constantly change their ingredients, it is important for someone with a gluten intolerance to be sure that the product has not changed since the last time they purchased it.
Dining out has proven to have its own set of challenges for those living gluten-free.
“If you want to have a salad, you can go anywhere,” said Piechowski. “It’s still minimal. (And) you just risk cross contamination with uneducated employees.”
Although gluten-free options are minimal at restaurants, the number of establishments offering gluten-free meals is expanding as the demand grows.
Piechowski said even the thing she misses the most, “real” pizza, has began to make its way into gluten-free dining.
Today, someone with gluten intolerance can find a gluten-free alternative to just about anything, but it’s never quite how it used to be.
“I miss bagels still,” said Brouse. “And I’ve tried the gluten-free bagels and they’re just nowhere near what a real bagel is.”
For more information go to the Minnesota Celiac Blog.