Tue, May 13, 2008
Cheryl Wilson shops with her mother, Thelma Caffarella, at Sunflower Farmers Market, where Wilson picks out gluten-free foods. Wilson is president of the Southern Arizona Celiac Support group. She said she learned of the disease when her brother was diagnosed in 2001. A year later, she tried the diet herself.
James S. Wood / Arizona Daily Star

Neighbors

Celiac disease mystery can be tough to crack

Those who can't tolerate gluten need a strict diet
By Patty Machelor
ARIZONA DAILY STAR
Tucson, Arizona | Published: 05.04.2008
They had no idea what was wrong. And often, neither did their doctors.
The not knowing nearly killed Bruce Kurth.
For others, the symptoms weren't so severe, but often the condition worsened over time.
Shelli Hanks, a radiation oncologist with four daughters, thought her migraines, fatigue and recurring diarrhea were "supermom syndrome."
For Cheryl Wilson, the stomach upset worsened over the years — she jokes about knowing every rest stop from Tucson to San Diego — but it wasn't until her brother was diagnosed that she first heard of celiac disease.
Also referred to as celiac sprue, celiac disease occurs when people with a genetic propensity for the disease eat foods containing gluten, or the proteins in wheat and some other grains. The result: inflammation of the lining of the small intestine, which over time becomes too damaged to absorb food nutrients.
Some patients also develop an intensely itchy skin condition called dermatitis herpetiformis.
On Saturday, the Southern Arizona Celiac Support group will host an informational gathering coupled with a gluten-free food fair to educate people about the disease.
Wilson said the event is important because it exposes people to the newest gluten-free products and "brings hope to the newly diagnosed that this lifelong treatment will not be boring."
People who suspect they might be gluten-intolerant can learn more about the disorder, she said.
For these Tucsonans, the diagnosis and treatment brought relief not only from chronic bouts of diarrhea and bloating, but in some cases from migraines, anemia, fatigue and depression.
The solution is to stop eating anything that contains gluten.
Hanks was 40 when she was diagnosed five years ago. About six weeks later, her daughter, Lindsey, also tested positive.
In the years leading up to her diagnosis, Hanks thought she might have irritable bowl syndrome. Eventually, she also developed anemia, and in spite of supplements, she was always tired.
"My doctor couldn't figure out why I was so tired," she said. "We thought it was supermom syndrome."
The testing continued, but nothing worked.
"My favorite one was, 'You're not tired. You're just depressed,' " she said.
When she was accurately diagnosed, Hanks was told that one in every 5,000 people is gluten intolerant. Five years later, it's closer to one in 130, according to researchers.
Dr. Alessio Fasano of the University of Maryland, in a 2003 study, called celiac disease "the only autoimmune disease where (the) trigger is known."
"That trigger is gluten," Fasano wrote.
Lindsey Hanks, now 9, said it can be challenging to eat a gluten-free diet. She almost always brings her own lunch to school and has to avoid common childhood favorites such as pizza and cake — unless her mom is the chef.
"Sometimes I get something in my system that I wasn't supposed to eat, and I'll get pretty sick," she said. "If I have a stomachache, my mother always asks, 'What did you eat today?' "
Shelli Hanks said everyone in her family eats a gluten-free diet at home.
"I think it's helpful for her that I have it too," she said. "It's not just what she couldn't have, but what we couldn't have."
Wilson, who is president of the Southern Arizona Celiac Support group, said that when her brother was diagnosed in 2001, she never had heard of the disease.
Her sister had been sick for a while and was receiving weekly iron shots, but a diagnosis was elusive.
A year later, Wilson, 52, decided to try a gluten-free diet after years of worsening stomach problems.
"I also had chronic fatigue. Within 10 or 15 minutes of eating gluten, I would fall asleep," she said.
When it got bad, she said, she would just skip meals instead of risking stomach upset again.
At this point, 25 family members have been diagnosed with celiac disease, including both parents and all but one of her seven siblings.
Wilson is now very selective about what she eats.
"I'm so careful because not every celiac gets as sick as I do," she said. "I bring my food everywhere I go. I will not eat if I have nothing gluten-free to eat."
Kurth was 5 years old in 1937. He was anemic, had chronic diarrhea and no diagnosis.
A visiting German doctor may have saved his life with a then-unusual diagnosis, at least for this country: "celiac sprue."
"He recommended a diet of liver, bananas and cottage cheese," Kurth said. "This regimen lasted for two years."
Kurth also took folic acid for anemia. It worked — for a while.
He didn't become extremely ill again until 10 years later. Then, the return of horrible diarrhea. His weight dropped from 128 pounds to 62 pounds.
"I was skin and bones," he said.
What saved him this time was not the insight of a doctor, but half a roll of toilet paper. He ate it alone in his hospital room at 2 a.m. after overhearing doctors talk about his dire situation.
Somehow, he said, eating the paper stopped the upset. His doctors called it a miracle, but Kurth had no idea how to protect himself from another bout.
In 1957, Kurth married his wife, Ann.
"I was eating casseroles and other foods. Some of it bothered me; some of it didn't," he said, explaining diarrhea was still a problem.
"Then I developed anemia again."
At age 32, it was a dietitian who passed on the words Kurth said have enabled him to live well since.
"She said, 'No more wheat, oats, barley or malt,' " Kurth said. The advice worked.
"Now, with the good Lord's permission, I'll be 76 on May 9."
East Side
● Contact reporter Patty Machelor at 235-0308 or pmachelor@azstarnet.com.