CIDPUSA.org Autoimmune diseases
Celiac disease mystery of chronic fatigue can be tough to crack
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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 its recovery.
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