Ellen
02-24-2007, 10:17 AM
An email from a friend today:
from the Tulsa World newspaper in Oklahoma....also noteworthy for those of us with dual-diagnosed family members is the mention of a 13 yr old with no "symptoms" other than canker sores, who was dx'd with celiac ONLY because after her brother was dx'd with type 1 dx, the whole family was then screened for celiac!!
regards
*** in Phila
Gluten for punishment
By DIA DARCEY Satellite Correspondent
2/23/2007
View in Print (PDF) Format (http://www.tulsaworld.com/TWPDFs/2007/Final/W_022307_d_1.PDF)
One in 133 Americans has this disease. Do you?
Growing (and hungry) teenagers are constantly on the prowl for nutrients. Right now, Girl Scout cookies are in season. Even the thriftiest kid will pull out his or her wallet and look forward to the joyful delivery day, when whole packages of Trefoils and Do-si-does are inhaled in minutes.
Conversations at lunch revolve around favorites, and numbers. "How many boxes are you getting?"
Haven't you always dreamed about being the lucky Girl Scout who has to "dispose" of "accidental" over-orders? That would be Elizabeth Robert's worst nightmare. Roberts avoids the Thin Mints and Samoa cookies she sells each year, not because they'll make her fat, but because they'll make her thin -- too thin. Foods like cake, pies, crackers and bread contain the protein gluten, which acts as a poison to Robert's body.
She can't meet friends at the pasta place before the dance, share doughnuts during first hour or even have the pizza at a slumber party. Going to a restaurant is a risky business, as she must dodge sauces, dressings, gravy and soups that could be tainted with a common component -- flour. The technical name for Roberts' plight is gluten intolerance, or celiac disease. She was diagnosed as a baby at 22 months and "almost died of starvation."
The National Institute of Health warns that as many as 1 in 133 people (including teens) have the disease, and as many as 97 percent don't know it. In a recent campaign, the NIH urged doctors of all specialties to watch for celiac disease by looking beyond the outdated textbook symptoms of CD -- stomach pain, bloating, weight loss and diarrhea -- and be aware of the equally-occurring symptoms of mouth sores, anemia, constipation, migraines, ADHD, fatigue, yellow teeth, short stature, depression, obesity, skin rashes and joint pain.
Dr. Peter H.R. Green, a specialist from Columbia University and author of "Celiac Disease -- A Hidden Epidemic," calls gluten intolerance, "the No. 1 undiagnosed disease in America."
So where are these sufferers? Who are they, and could someone you know -- or even you -- have it? The NIH reports that CD affects all ages. While Roberts was diagnosed as a baby, Sara Vaughn, a junior at Union High School, suffered two months of constant stomach pain before she was recently tested.
All sufferers are advised to change their diets. Celiac disease is an autoimmune disorder that affects the intestines each time gluten is eaten. Gluten is the stuff in flour that sticks it together -- technically, the protein in wheat, barley and rye. Gluten withers the villi in the intestine like a brown lawn in the summertime.
Avoiding this component in foods is the "easy cure" -- or would be, if it weren't in nearly every food that we grab to eat. Kristen Hansen, a 17-year old runner at Jenks High School, struggles to avoid these foods. "I try to race cross-country and stay on a gluten-free diet, but that's nearly impossible."
Hansen was a healthy 13-year-old suffering with canker sores when her brother was diagnosed with diabetes. Her family was tested and she and her father were positive for celiac disease. She suffers no debilitating symptoms and therefore lacks motivation to stick to the diet.
Rene Norman is a registered dietitian at Nutrition Consultants of Tulsa who counsels patients with celiac disease. She warns, "A common belief of people with CD is that no symptoms means no damage. Wrong." Norman went on to explain that those diagnosed must stay gluten free or "risk more serious medical problems like anemia, osteoporosis, some cancers, asthma and other auto-immune disorders."
Adding to the complexities of diagnosis is the "honeymoon period" that many teenagers experience when their gastrointestinal problems disappear during adolescence. Symptoms may return with a vengeance when the youth reaches his early 20s. There are no simple answers as to why the disease is under-diagnosed, but doctors may miss this disease because of its diverse symptoms.
Typically, a positive diagnosis takes seven years. Sufferers are first misdiagnosed with other problems such as irritable bowel, acid reflux or anemia before they are tested for CD.
Roberts said not being able to eat Girl Scout cookies isn't the hardest part. "The hardest part is convincing people that the reason I don't eat them isn't that I'm worried about getting fat, it's that I can't," she said.
Additionally, she said, a gluten-free diet makes CD seem less like a disease and more of a simple inconvenience that happens to have some serious side affects. She also said that gluten-free alternative foods are getting better every year. "When I was little, they were kind of gross. Now, you can't always tell the difference between the normal cookies and the GF ones."
Dia Darcey 581-8336
Jenks junior
satellite@tulsaworld.com (satellite@tulsaworld.com)
from the Tulsa World newspaper in Oklahoma....also noteworthy for those of us with dual-diagnosed family members is the mention of a 13 yr old with no "symptoms" other than canker sores, who was dx'd with celiac ONLY because after her brother was dx'd with type 1 dx, the whole family was then screened for celiac!!
regards
*** in Phila
Gluten for punishment
By DIA DARCEY Satellite Correspondent
2/23/2007
View in Print (PDF) Format (http://www.tulsaworld.com/TWPDFs/2007/Final/W_022307_d_1.PDF)
One in 133 Americans has this disease. Do you?
Growing (and hungry) teenagers are constantly on the prowl for nutrients. Right now, Girl Scout cookies are in season. Even the thriftiest kid will pull out his or her wallet and look forward to the joyful delivery day, when whole packages of Trefoils and Do-si-does are inhaled in minutes.
Conversations at lunch revolve around favorites, and numbers. "How many boxes are you getting?"
Haven't you always dreamed about being the lucky Girl Scout who has to "dispose" of "accidental" over-orders? That would be Elizabeth Robert's worst nightmare. Roberts avoids the Thin Mints and Samoa cookies she sells each year, not because they'll make her fat, but because they'll make her thin -- too thin. Foods like cake, pies, crackers and bread contain the protein gluten, which acts as a poison to Robert's body.
She can't meet friends at the pasta place before the dance, share doughnuts during first hour or even have the pizza at a slumber party. Going to a restaurant is a risky business, as she must dodge sauces, dressings, gravy and soups that could be tainted with a common component -- flour. The technical name for Roberts' plight is gluten intolerance, or celiac disease. She was diagnosed as a baby at 22 months and "almost died of starvation."
The National Institute of Health warns that as many as 1 in 133 people (including teens) have the disease, and as many as 97 percent don't know it. In a recent campaign, the NIH urged doctors of all specialties to watch for celiac disease by looking beyond the outdated textbook symptoms of CD -- stomach pain, bloating, weight loss and diarrhea -- and be aware of the equally-occurring symptoms of mouth sores, anemia, constipation, migraines, ADHD, fatigue, yellow teeth, short stature, depression, obesity, skin rashes and joint pain.
Dr. Peter H.R. Green, a specialist from Columbia University and author of "Celiac Disease -- A Hidden Epidemic," calls gluten intolerance, "the No. 1 undiagnosed disease in America."
So where are these sufferers? Who are they, and could someone you know -- or even you -- have it? The NIH reports that CD affects all ages. While Roberts was diagnosed as a baby, Sara Vaughn, a junior at Union High School, suffered two months of constant stomach pain before she was recently tested.
All sufferers are advised to change their diets. Celiac disease is an autoimmune disorder that affects the intestines each time gluten is eaten. Gluten is the stuff in flour that sticks it together -- technically, the protein in wheat, barley and rye. Gluten withers the villi in the intestine like a brown lawn in the summertime.
Avoiding this component in foods is the "easy cure" -- or would be, if it weren't in nearly every food that we grab to eat. Kristen Hansen, a 17-year old runner at Jenks High School, struggles to avoid these foods. "I try to race cross-country and stay on a gluten-free diet, but that's nearly impossible."
Hansen was a healthy 13-year-old suffering with canker sores when her brother was diagnosed with diabetes. Her family was tested and she and her father were positive for celiac disease. She suffers no debilitating symptoms and therefore lacks motivation to stick to the diet.
Rene Norman is a registered dietitian at Nutrition Consultants of Tulsa who counsels patients with celiac disease. She warns, "A common belief of people with CD is that no symptoms means no damage. Wrong." Norman went on to explain that those diagnosed must stay gluten free or "risk more serious medical problems like anemia, osteoporosis, some cancers, asthma and other auto-immune disorders."
Adding to the complexities of diagnosis is the "honeymoon period" that many teenagers experience when their gastrointestinal problems disappear during adolescence. Symptoms may return with a vengeance when the youth reaches his early 20s. There are no simple answers as to why the disease is under-diagnosed, but doctors may miss this disease because of its diverse symptoms.
Typically, a positive diagnosis takes seven years. Sufferers are first misdiagnosed with other problems such as irritable bowel, acid reflux or anemia before they are tested for CD.
Roberts said not being able to eat Girl Scout cookies isn't the hardest part. "The hardest part is convincing people that the reason I don't eat them isn't that I'm worried about getting fat, it's that I can't," she said.
Additionally, she said, a gluten-free diet makes CD seem less like a disease and more of a simple inconvenience that happens to have some serious side affects. She also said that gluten-free alternative foods are getting better every year. "When I was little, they were kind of gross. Now, you can't always tell the difference between the normal cookies and the GF ones."
Dia Darcey 581-8336
Jenks junior
satellite@tulsaworld.com (satellite@tulsaworld.com)