Altoona woman with Celiac Disease was misdiagnosed for 20 years - WQOW TV: Eau Claire, WI NEWS18 News, Weather, and Sports

Altoona woman with Celiac Disease was misdiagnosed for 20 years

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Eau Claire (WQOW)- Having a disease is tough enough.  It's hard to imagine suffering without knowing what you have.  A local woman went through that for the last two decades.

"For 20 years, seeing a gastroenterologist, seeing several gastroenterologists, and they all missed it," remembers Holly Williams.

For the last 20 years, Williams knew something was wrong with her body, but doctors couldn't figure out what it was. 

"I was on a couple different stomach medications to try and control the symptoms and nothing was working," Williams recalls.  "I ended up with pre-cancer of the esophagus."

Williams is one of two million Americans who suffer from celiac disease.

"Patients who have this condition are intolerant of a protein that is found in grains called gluten," explains Dr. Jim Zighelboim, a gastroenterologist at Mayo Clinic Health Systems in Eau Claire.  "So if you have this condition, you cannot eat wheat, barley, and rye."

Looking back, Williams knew her stomach hurt, but doctors couldn't pinpoint the reason. 

"It was very frustrating because it was robbing me of everything that I wanted to do," she points out.

"A large proportion of patients have symptoms that are not classic," says Dr. Zighelboim.  "Some people have symptoms that are more consistent with irritable bowl syndrome and are often misdiagnosed."

"They were suggesting a more bland diet, eating more bland foods which of course are gluten breads and crackers and things like that.  And they just could not get a handle on it," Williams remembers.

Symptoms include abdominal pain, diarrhea and weight loss.  For Williams, those symptoms stopped about eight months ago.

"My friend, who is a nurse, suggested that I be checked for Celiac and eliminate gluten," Williams says.  "Since I've done that, I am wonderful.  When I was eating gluten, I was miserable.  I was sick constantly.  I just never wanted to do anything because I felt terrible.  I was tired.  Now I am perfect.  I go and do what I want and I'm not stopped."

Williams says her family has noticed a change in her, especially with how much more energy she has. 

The doctor WQOW spoke with on Wednesday says he's not sure if celiac disease cases are on the rise or if doctors are just more aware of how to diagnose it.

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