Doctor Wants Universal Celiac Testing

[Claire]

This should generate some discussion - especially the last few lines. Claire

DOCTOR WANTS UNIVERSAL CELIAC TESTING

AUSTIN, Texas, May 1 (UPI) -- Doctors are debating universal testing for celiac disease, a chronic intestinal disorder increasingly linked to type 1 diabetes.

While early diagnosis can improve lives and prevent intestinal damage, critics of the idea say the test is too costly and too invasive.

Celiac disease is a lifelong disorder that sickens people when they eat gluten, a protein found in wheat, rye and barley. If left untreated, celiac disease can lead to serious complications, including fragile bones, cancer and even death from malnutrition, the Austin American-Statesman reported.

The disease affects an estimated one in 100 people in the general population but is increasingly being linked to people with the type 1 diabetes, the newspaper said.

At the American Diabetes Association's annual meeting in June, Dr. Jane Wray of Austin plans to push for new guidelines for doctors to screen all type 1 diabetics for celiac, the newspaper said.

Opponents say universal testing is too costly and too invasive and can be life-altering if the disease is confirmed before symptoms show up. They say they can't imagine telling children who don't appear sick that they can never eat bread, pizza, pasta or cookies again, the newspaper said. [no further content]

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[chrissy]

.........and i just can't imagine telling a child who doesn't have a STD that unprotected sex isn't safe.........or why tell them anything else they don't want to hear...........IDIOTS!!

christine

[GreySaber]

.........and i just can't imagine telling a child who doesn't have a STD that unprotected sex isn't safe.........or why tell them anything else they don't want to hear...........IDIOTS!!

christine

It won't happen. But imagine if it did..... The implications for gluten free eating...

[tiffjake]

Opponents say universal testing is too costly and too invasive and can be life-altering if the disease is confirmed before symptoms show up. They say they can't imagine telling children who don't appear sick that they can never eat bread, pizza, pasta or cookies again, the newspaper said.

Idiots.

[GreySaber]

Idiots.

Isn't it life altering enough when they do show up?

[tiffjake]

Isn't it life altering enough when they do show up?

Who? The idiots? Yeah, it is life altering...we get new laws, new medical advice, and a host of other problems. Too bad they are everywhere. Maybe we can make an "idiot virus" that will seek them out and infect them all? Eh, just a thought.

Back to the article though, if people DID know before there were symptoms, I BET MONEY there would be less use of mental depression meds, headache meds, pain meds, etc, and what medical offical in their right mind would advocate that? It has always been known that if WE THE PEOPLE were in control of our health, BIG MEDICAL and BIG PHARMA would be out of business. There will never be a pill for celiac, because the make more money off of the other problems out there.

***Edit! Just "got" your reply. Yes, the change is life-altering later, and I think it would be much EASIER to make the change EARLIER! I am 23, and I am SOOOO glad that I know NOW and not when I am 33, or 43, and I have kids and other people to worry about confusing or changing THEIR stuff, you know?

[Matilda]

..

[debmidge]

they must be avoiding doing it because it makes too much gosh darn sense!

Imagine, the medical community being Pro Active....wow it would blow their image of being inept, self important, arrogant windbags. Then they couldn't pontificate on how your symptoms are all in your head or why you have IBS or it's just stress in your life.

[GreySaber]

Back to the article though, if people DID know before there were symptoms, I BET MONEY there would be less use of mental depression meds, headache meds, pain meds, etc, and what medical offical in their right mind would advocate that? It has always been known that if WE THE PEOPLE were in control of our health, BIG MEDICAL and BIG PHARMA would be out of business. There will never be a pill for celiac, because the make more money off of the other problems out there.

Yes, I'd like to see the whole world broken down and rebuild, but it's better not to worry too much about it. You just stress yourself to flinders and nothing gets done.

[jerseyangel]

they must be avoiding doing it because it makes too much gosh darn sense!

Imagine, the medical community being Pro Active....wow it would blow their image of being inept, self important, arrogant windbags. Then they couldn't pontificate on how your symptoms are all in your head or why you have IBS or it's just stress in your life.

Exactly, and this may explain why it seem doctors go out of their way to NOT diagnose Celiac!

[jnclelland]

Opponents say ... they can't imagine telling children who don't appear sick that they can never eat bread, pizza, pasta or cookies again, the newspaper said. [no further content]

Oh, c'mon, guys, this is actually a valid concern. I'm toying with the idea of having my kindergarten-age son tested, but I have NO idea how I'd get him to go along with the diet since he doesn't have any symptoms that are problematic TO HIM. And I'm not naive enough to think that I can just "put" him on the diet; he's in plenty of situations (school, birthday parties, etc.) where I can't control what he eats. So really, how DO you convince a child that he needs to avoid gluten - which means not eating favorite foods, having the stigma of being "different," and a million other things - if he doesn't have any obvious symptoms?

Jeanne

[penguin]

I'm glad the article got posted, I was going to post it yesterday but didn't get a chance to. Overall, it was a good article. Some of the local celiacs here wrote letters to the editor saying how, yes, there are replacements and they're yummy.

Why is it again that the doctors are afraid their patients won't be able to eat CRAP anymore?

[Laura--G]

Here's the entire article that was in the Austin American Statesman:

As more diabetics turn up with celiac disease, doctors grapple with universal testing

Testing can improve lives but procedure is costly and invasive

By Mary Ann Roser

AMERICAN-STATESMAN STAFF

Monday, May 01, 2006

After 23 years of treating children with diabetes in Austin, Dr. Jane Wray made a startling find. Despite strict monitoring of her patients, she hadn't noticed that a second chronic disease was attacking them.

The stealth ailment is celiac disease, a lifelong intestinal disorder that sickens people when they eat gluten, a protein found in wheat, rye and barley. Left untreated, celiac disease can lead to serious complications, including fragile bones, cancer and even death from malnutrition.

The disease affects an estimated 1 in 100 people in the general population. But it is increasingly being linked to people with the most severe form of diabetes, type 1. About one in 10 type 1 diabetics — people whose bodies can't make insulin — are believed to have celiac disease, but many don't know it.

Wray wants to change that. She's now in the middle of one of the bigger controversies in diabetes care: whether to screen all type 1 diabetics for celiac disease or just those who exhibit symptoms.

At the American Diabetes Association's annual meeting in June, Wray intends to push for new guidelines for doctors to screen all type 1 diabetics for celiac. But some doctors say universal testing is too costly and too invasive and can be life-altering if the disease is confirmed before symptoms show up. They say they can't imagine telling children who don't appear sick that they can never eat bread, pizza, pasta or cookies again when the disease may not be harming them.

"You're pushing them toward a major life disruption," said Matt Petersen, director of information resources at the diabetes association. For now, the association recommends screening only patients who have celiac symptoms, he said.

But, Wray asks, what are those symptoms?

Two of celiac disease's most common symptoms, fatigue and intermittent diarrhea, might be easily missed by doctors because "a normal person can have those," she said.

Celiac disease affects many parts of the body, and symptoms can be wide-ranging, including depression, bone pain, an upset stomach, rashes, mouth sores, dental disorders and tingling in the legs and feet.

Wray and her supporters believe that even in the absence of symptoms, damage can be occurring to the body. She became acutely aware of that four months ago when a patient felt so sick that he zoomed past the receptionist to find Wray, one of few Austin doctors who specialize in pediatric endocrinology, the study of hormones.

During a previous visit, "he had very mild symptoms, and . . . I wasn't impressed," said Wray, 61. "But when he came back, he was extremely sick. I was just shocked that I hadn't been more impressed by his other symptoms."

The patient, who is 25 and has been seeing Wray since childhood, had been tired and lethargic. Wray thought he was depressed. But when he came in that day, he had major digestive problems. Wray screened him for celiac disease. The blood test came back positive. To confirm the diagnosis, however, she had the necessary intestinal biopsy done. It not only confirmed celiac but also showed intestinal damage.

"This is an insidious complication we have not been looking for," she said. "It will ruin the health of the person if it is not caught."

Wray began screening all 200 of her patients with type 1 diabetes. After testing 125 of them, a dozen have turned up with celiac disease. The blood test costs about $200, and insurance coverage varies, Wray said. She said she doesn't know how much the biopsy costs, including hospital charges and other fees.

"I just feel like people shouldn't have to get sick and tired and worn down if they don't have to," she said. "People should be able to make their own choices. They should know if they're chronically ill and be able to avoid it if they can."

Dr. Tom Blevins, an Austin endocrinologist, said he respects Wray but is not prepared to screen all of his type 1 patients for celiac.

"There are so many things we could screen every single person for," he said. But "without a symptom of something, then it's frequently difficult to get tests paid for. . . . That is definitely a problem."

Wray said she has not encountered that problem with insurance companies and does not think her patients have.

The 10 percent rate of celiac disease that she has discovered is what experts are finding nationally among type 1 diabetics, said Dr. Eric Sibley, an assistant professor of pediatric gastroenterology at Stanford University's medical school and an expert on celiac disease.

The two diseases are thought to be related. Type 1 diabetes is an autoimmune disorder, and celiac is believed to be, Wray said. Studies also suggest a shared genetic susceptibility to both diseases. Sibley said he was not prepared to endorse celiac screening for all type 1 diabetics.

"If costs are not a factor and time, in a perfect world . . . it would be preferred," he said.

Dr. Peter H.R. Green, co-author of a new book, "Celiac Disease: A Hidden Epidemic," is ready to embrace universal screening.

Unfortunately, he said, too many physicians don't think about celiac because "they're taught it's a rare condition." Some U.S. diabetes centers screen all type 1 diabetics for celiac, but many do not, said Green, director of the Celiac Disease Center at Columbia University's medical school.

Celiac disease is vastly underdiagnosed, Green said. Only about 5 percent of the people in the United States estimated to have the disease have been diagnosed, he said. In other countries, including Ireland and Finland, as many as half of people with celiac disease have been diagnosed, he said.

One of the patients Wray screened who tested positive was Jonah Griggs, 8. His family has had to make major life changes, said his stepfather, Mike Gromer, 25, of Cedar Park.

"It was something we had never heard of before," he said.

The family makes sure that Jonah doesn't eat gluten and doesn't even touch products that contain it, such as Play-Doh and chalk, because he could get sick from hand-to-mouth contact, Gromer said.

"It hits you hard," Gromer said of the diagnosis. "We didn't have much support for it, and we didn't know what to do."

So, he started a Web site to share information with others, www.austinceliackids.com.

"We've been slowly getting lists of places we can go to that have gluten-free food. French fries are fine . . . but McDonald's has gluten in seasonings, and we can't go there. Hamburgers without a bun are OK, but the burger can't come in any contact with the bun."

Grocery shopping can take a long time because all the labels must be read, and they're constantly changing, Gromer said. A federal law that took effect in January requires manufacturers to provide more information on food labels about products that contain wheat, and more changes are proposed.

"This week, Cheetos are gluten-free, but you never know when they're going to change their ingredients," he said.

Substitutes for gluten, including rice, corn, sorghum and potato flour, can reverse the damage done by celiac disease and make the intestines healthy again, but there is no drug to treat celiac.

Green and others say that is one reason that many doctors don't pay much attention to it.

For her part, Wray said she is grateful a young man opened her eyes.

maroser@statesman.com; 445-3619

Celiac disease

•A chronic, lifelong intestinal disorder that damages the villi, fingerlike protrusions that absorb nutrients into the body.

•Person gets sick after eating wheat, rye or barley.

•Often activated in adolescence or young adulthood after an injury, severe stress, surgery, infection or giving birth.

•Symptoms commonly include diarrhea and weight loss, although more severe complications can occur.

•Runs in families.

Dr. Wray is my son's endo and my son had NO symptoms but came up positive. I am very glad she tested him instead of us waiting until he was sick. I know some doctors disagree but I'd rather find out now.