Posted Mar 26, 2009
Chelsea Wheeler, 6, had her first birthday cake at age 4 and her first take-out pizza only recently. The poignancy of those events isn’t lost on her parents, Chris and Linda Wheeler.
Chelsea suffers from celiac disease, but it took so long to get to that diagnosis — including 20 unnecessary surgeries — that the Wheelers have made it a mission to raise research money and awareness about celiac, a genetic digestive disorder triggered by gluten, a protein found in wheat, barley and rye.
There is no cure or medication for celiac, but a gluten-free diet allows sufferers to lead normal lives. Chelsea’s younger sister, Julia, also has the disease.
Unfortunately, Chelsea went through three years of sickness and life-altering surgeries before she was diagnosed. Since the disease has varied symptoms, from learning disabilities to wrenching intestinal pain, it is often misdiagnosed, so raising awareness even among doctors is a crucial part of the fight.
Chris Wheeler said that one in 133 Americans has celiac, but 95 percent are misdiagnosed.
“Chelsea is a worse case,” Chris Wheeler said. “We just want to raise awareness so no one has to go through what she’s gone through.”
The Wheelers have organized a golf tournament and luncheon fundraiser, “Chip in for Celiac,” which will take place May 15 at Whitney Farms Golf Course in Monroe. The luncheon will be open to those who don’t golf. To sponsor, donate or reserve a spot or for more information, call Wheeler at (203) 463-9422.
After the diagnosis, the Wheelers became involved in the Greater New Haven Celiac Group, Chapter 75 of the Celiac Sprue Association. They heard other people’s stories and shared information, including about gluten-free foods. Now, many people affected by the condition call Linda Wheeler for information or support.
The golf fund-raiser is sponsored by the University of Maryland. The proceeds will go to the university’s Center for Celiac Research, with a portion to be directed to the New Haven group, which is helping with vendors and donations.
Despite having an army of medical specialists trying to find out why Chelsea could not gain weight and was throwing up full feedings as a baby, no one diagnosed Chelsea until Linda Wheeler, a very thin woman who had gone through many bouts of anemia, was found to have celiac.
Celiac hinders absorption of nutrients, often making its victims thin. Since the disease is genetic, Chelsea was tested and found to be positive; her three older siblings, ages 7 to 11, carry the gene and need to be tested every few years to watch for a rise in antibodies, but they don’t exhibit symptoms yet and are not on gluten-free diets. The youngest, Julia, 2, was put on a glutenfree diet when she was unable to keep food down as a baby.
Although Chelsea has significant health problems stemming from her surgeries, she looks the picture of health these days. She has big, dark blue eyes, an engaging manner and a healthy weight.
But that wasn’t always the case.
The Wheelers’ ordeal began when Chelsea was about 2 weeks old and Linda, as instructed by doctors, was thickening her formula with barley. Chelsea, who had been born prematurely, was throwing up full feedings and was not gaining weight.
Suspecting it could be the barley, Linda took it out of Chelsea’s formula about two weeks before she would be tested for celiac disease, among other ailments. The test came back negative because the barley had been out of her diet.
Linda Wheeler began giving her the barley in the bottle again. Chelsea lost so much weight she was admitted to the hospital at 8 months for a “nutrition rescue,” meaning she was fed through an intravenous tube. She continued to throw up and at 11 months old was back in the hospital for another rescue because she had lost so much weight. She was 12.5 pounds at age 1.
Doctors tested for every liver, pancreatic and stomach disease they could think of, but turned up nothing, her parents said. She was seen at Yale-New Haven Hospital, Children’s Medical Center in Hartford and Mount Sinai Hospital in New York.
It was at 13 months old that doctors performed major surgery to cut her stomach away from her spleen so she couldn’t throw up. That surgery brought numerous complications and has left her, among other ailments, with a condition called “dumping” that causes her blood sugar to often spike then drop after eating, leaving her in need of a nap. She also has seizures and takes many daily medications. Because she can’t throw up, when Chelsea gets a stomach bug, she just heaves with no relief, Chris Wheeler said.
In the years after the surgery, she still wasn’t gaining weight. She was dependent on a feeding tube that entailed carrying equipment everywhere the family went.
Then, at about age 3 1/2, when the celiac disease diagnosis came for mom, Chelsea was finally properly diagnosed. A gluten-free diet was the simple remedy. Chelsea had been through 30 surgeries, 10 of them connected to trying to diagnose her problem.
“We look at the world in a different way; things that used to seem important aren’t important anymore,” Linda Wheeler said.
Bill Jacobs, president of the New Haven group, called Chelsea’s story a sad one and said any money that goes toward the group from the golf tournament will be well spent on its many activities, including workshops, bringing in expert speakers on celiac and other supports, including updates on gluten-free food products and restaurant menus and a newsletter.
For more information on the group call Jacobs at 272-9646.
Jacobs was diagnosed 28 years ago and his daughter, now 17, was put on a gluten-free diet at age 13 when her antibodies increased, although she had no symptoms.
Jacobs said the group encourages anyone with intestinal symptoms to seek medical help. Celiac can exhibit wide-ranging symptoms, however, including weight loss, malnutrition, anemia, osteoporosis, infertility, depression and constipation, according to the University of Maryland Center for Celiac Research.
In the Wheeler household, Linda estimates that 75 percent of the family dinners are glutenfree. Gluten-free products, often bought at health food stores, are pricey. A half-pound of glutenfree pasta costs about $6, the same price as six pounds of traditional pasta.
Fresh fruits, vegetables, meats and many other non-processed foods are gluten-free and fill the family’s kitchen as well.
“People assume we’re health nuts or don’t want them to have sugar,” Chris Wheeler said.
Chelsea loves food so much now after all those years without it that Chris Wheeler said he sometimes worries about her preoccupation: She wakes up knowing what she wants for breakfast, lunch and dinner. One of her favorite activities is grocery shopping. Since she is supposed to eat several small meals a day, they inevitably have to intervene with her eating.
“You never want to say, ‘No,’ if someone’s hungry,” Chris Wheeler said.
Cheslea is in half-day kindergarten, but has already missed a lot of school because of her medical problems, including the urge to “crash” after eating, Chris Wheeler said.
It was a milestone birthday when Chelsea turned 4 because she had her first birthday cake, gluten-free of course. More recently, the family found a restaurant in Waterbury that makes gluten-free pizza. It was a big day, Chris Wheeler said, when he could take Chelsea to get pizza, something most kids take for granted.
“It’s so worth going to Waterbury because you could see the excitement on her face,” he said.
Date: Mar 6, 2009
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Copyright © 2009, New Haven Register, Conn.
