It's one of the most common genetic conditions in the world. Still: 97% of those who have what's called Celiac Disease--are misdiagnosed. It affects children and adults, men and women and it's a disease that has everything to do with what you eat and can take a serious toll on your health-and your lifestyle.
Desperation is what Brandy Trafman felt ever since she was 13, but as a beauty pageant contestant winning over the judges became harder and harder as she feared she was losing her life.
"There's something wrong with me, and I'm slowly dying and nobody's figuring it out," says Trafman.
Then during her first year of college Brandy got the scare of her life.
"My stomach was in such excruciating pain that I woke up in the middle of the night screaming... and my friends in the dorms had to rush me to the hospital."
Misdiagnosed for most of her childhood, Brandy learned she suffers from Celiac Disease which is an autoimmune disorder where the body reacts abnormally to gluten-a protein found in wheat, rye, and barley. Gastroenterologist Michael Goldberg of Evanston Northwestern Healthcare confirmed Brandy's condition after conducting a number of tests.
"Basically, nobody could find out what was wrong with her, but when I talked to her it seemed like she did have something going on. It's just that it wasn't found with all the tests that she had," says Evanston.
The problem with Celiac Disease is it effects about 1 in 133 people yet more than two million Americans don't even know they have it. Symptoms include diarrhea, bloating, weight loss, anemia, mouth sores, joint pain, tooth enamel defects, and an itchy rash.
"But more of the patients today that we see just have non-specific symptoms,” says Goldberg, “they may have iron deficiency anemia, they may have problems with their liver, hepatitis that nobody can find an answer for."
Once doctors do find the answer, patients must put themselves on a very strict diet. Items to avoid include bread, most soups, beer, even salad dressing.
"It was a completely change of lifestyle for me,” says Trafman, “Luckily, I've always liked fruits and veggies. So, for a while one of the important things was being able to maintain my weight."
Even luckier for Brandy was the opening of this nearby eatery in Evanston, Illinois. The name, "Rose's Wheat Free Bakery."
"We are the first bakery in the Chicago area that's completely gluten-free," says Owner Rosemarie O'Carroll who cooked up the idea cooking for her family. Her mother, sister, three children, and herself are all gluten-intolerant.
"I knew there was a market out there and I knew there was a need. I have people coming in everyday saying thank you."
Brandy is one of them. Because of the bakery, she not only can live a normal life, she can live a normal college life.
“It's not just breads and pastas and things but they actually have the junk food that a college student like me would enjoy eating."
As for her future plans she intends to turn her original "mis"-diagnosis into a "Miss" Illinois title. Her pageant platform: making others aware of celiac disease.
CLICK ON LINKS FOR INFORMATION ON CELIAC DISEASE:
The Mayo Clinic: Celiac Disease
Northwest Gluten Group: Gluten-Free Diet
Northwest Gluten Group: Gluten-Free Companies
VIEWER RECOMMENDATIONS:
Bastyr Center for Natural Health
WEB EXTRA: The "Bad Buzz," "Trampoline Terrors," and the therapy that's "Music To Your Brain"
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A reminder that none of these energy drinks is regulated by the FDA. Doctors say teens and kids should probably avoid them all together.
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