PHILADELPHIA (CBS) — Millions of people have an undiagnosed disease that can cause everything from infertility and headaches to cancer and learning disabilities. 3 On Your Side Health Reporter Stephanie Stahl has more on a new effort to change that.
Many people suffer for years before they’re accurately diagnosed with celiac disease. Now, there’s a new campaign to get more people tested, so they can fix the problem on their own simply by knowing what to avoid.
Donna Bell only uses certain kinds of lipstick; the brands that don’t contain gluten. Same goes for toothpaste.
“Everything you can think of that is processed food could have gluten in it,” said Donna.
Gluten, the protein in wheat, barley and rye, aggravates celiac disease, which Donna and her daughter, Evey, both have.
Celiac affects the small intestine and absorption of nutrients.
“I couldn’t function,” said Donna.
And like many with the disease, Donna went for years not knowing what was wrong. Doctors treated her extreme anemia with iron supplements that contained gluten and ended up making her sicker.
“I was going to a hematologist who did not put two and two together with the celiac disease,” said Donna.
“In my case, I had a full term stillbirth, three miscarriages and a two-pound baby. It presented itself in a very odd way,” said Alice Bast, who also went for years with undiagnosed celiac disease. She founded the National Foundation for Celiac Awareness, which has helped to make gluten labeling more common.
“The most surprising products that you have to watch out for would be tea,” said Alice to Stephanie, showing her a box of tea.
“Almost three million people have celiac disease that’s undiagnosed, and that’s why our goal is to get one million people tested by 2015,” said Alice.
Once accurately diagnosed, patients like Donna and Evey get their lives back by staying away from gluten.
“I think awareness is key,” said Donna.
They’re hoping that increased awareness will lead to more testing, which is especially important for children.
There can be 300 symptoms of celiac disease.
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For more information on celiac disease, click here.
Reported by Stephanie Stahl, CBS 3