ms-sillyak-screwed

"""QUOTE(Carriefaith @ Mar 29 2006, 10:17 AM)

Like the brazil nut genetically modified soybeans."""

Is this really true???

If this is a fact -- it explains why I get a reaction to BrazilNuts.

-

I always drink a red bull at the first sign of glutening (I'm having one now!). The caffene brings the energy up to a halfway decent level, and all the b-vitamins help the brainfog. Immediatley after glutening, it's my best weapon. I'm sure the niacin does something good, too. I have problems taking regular vitamins, so it really works for me.

I looked at the vitmins in RED BULL and I was suprised. -- niacin 100%; vitamin b6 250%; vitamin b12 80%; pantothenic acid 50% -- I know when I get a B-12 shot, it has folic acid and pantothenic acid too. The pantothenic acid makes a big difference for me. Like ChelsE said the caffene lifts her energy.

I can see how it works. I'm just hypersenstive and am extremely limited and cautious about the natural flavor and natural ingredents, they hide so much there that makes us sick and we don't know it until later.

I carry cards of immodium in my wallet.

I do the same thing - along with an anti colon-spazm pills.

This isn't a repair stategy, but something I considered doing today to try to prevent someone scattering pizza and doughnut crumbs around the kitchen with gay abandon - I seriously considered asking my DH to look in the toilet before I flushed it. I didn't do it. But ... I really feel like saying "Look!!! See how abnormal this is!!! How do you think I feel with that coming out of my bottom???"

Matilda -- Honestly I like the way you think. I think we should show them -- I know I feel the same way!

It's called steatorrhea diarrhea: fat in the feces which are frothy and foul smelling and floating; a symptom of disorders of fat metabolism and malabsorption syndrome. Foul-smelling loose bulky pale stool... People who don't have this have no-idea what we go through!

Basics: Mix --

one level teaspoon of salt

eight level teaspoons of sugar

one liter of clean drinking water

Among its medically useful ingredients, Pedialyte also contains sodium citrate, one of the components of citric acid, and potassium. If your child can keep food down without vomiting you can supplement your homebrew with some mashed banana at mealtimes; if not, you can add 1/2 c. orange juice to the homemade solution.

We found that adding

3 tablespoons of Splenda

1 packet unsweetened Kool-Aid, fruit punch flavor

...improved the flavor's drinkability, as seen from a toddler's perspective.

Sounds good -- but watch out for words like natural ingredients or natural flavors. They are allowed to trick us using those words they hide. Kool-Aid is is no no for me. And Spenda triggers my migraines... But your recipe for homemade Pedialyte looks safe. Thanx

Also one other thing I don't know if any of you follow that school of thought. DISTILED WATER ONLY. I noticed a big difference only drinking distilled water instead of spring water. It has too many minerals our sick bodies don't need to process. Other people have said they feel better with distilled too.

When I get glutened, I suffer severe abdominal pain. I'm doubled over, in bed and usually end up just sobbing because it hurts so bad.

I know your pain...

I hear stories like this, and I wonder if celiac is what I have. I get mild-medium intestial discomfort, and about 30 very distinct kinds of bad poo. I can describe, (But won't) atleast 10 kinds of bad poo off the top of my head......

Even so, I hate my poo.

People have no idea what it's like and we all have varing degrees over time...

Life with ste·a·tor·rhe·a!

I don't know anything about babies but I have read the best thing YOU can do is breastfeed them. It builds up their antibodies so they won't get celiac disease...

Talking about babies I just posetd something about 'baby stuff' that might help YOU feel a little better.

drink baby pedialyte when I feel bad I'll link it here.

This was from a thread about what makes you feel better after you get gluten in your system.

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Ms Sillyak: What's pedilyte? I had to google it. Is it something to do with infants, something meant to help babies? (I'm in Britain- never heard of it). Thanks for the advice, though. It's very welcome! X

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This stuff is a life saver for me. If I'm laying on the bathroon floor after a seizure and steatorrhea diarrhea that has me weak and frail I drink this stuff. It's like a miracle treatment. I keep a bottle un-opened under my bathrrom sink, so I can get to it easy from the floor. When I feel like I'm shaky, or weak or like I have no blood in my veins, this perfoms miracles for me.

Yes, it's for babies. Some other companies make it in the health-food stores, but they have additive I don't want. The one I drink is the un-flavored one (clear). This is better at replacing electrolytes, more so then gatorade or sports drinks. It's expensive $4 or $5 a bottle. But it really really works. TRY IT!

SOY is poison!

This is a thread from awhile ago. Some people (in denial) still think it's good. You can judge for yourself.

BE WELL!

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I was the same way about 5 years gluten & dairy free and then -- bam -- secondary food allergies and a thyroid problem.

Some celiac's can't do dairy, corn, rice or potatoes... I can't either. For me the real poision is SOY. Some don't believe me because the mainstream and healthfood stores are still in denial. And some here know it's a fact. I know SOY is what caused my thyroid problem...

Also, beware of binders in your medication. I have a big problem with them, they put corn, dairy and other hidden things. I go to a compounding pharmacist. I have also discovered that many of the main stream med are cross contaminated with gluten. The companies buys their dye from another comany that puts gluten in their pills, they run the dyes on the same lines. And so we get cross contamination and no one tells us these things. Or they give the ingredient a lab name that we don't understand to confuse us.

One thing I do that helped me is a food body journal of my journey. I write down everything that goes in my mouth. I can go back and refer to it to see for myself the cause.

Texas Celiac -- Welcome to your new home away from home!

I agree with everyone here. And I also have a thyroid problem. At first my endo doc wrote in my chart I was borderling-hyperthyroid, then she charted that I had Graves...then I developed a HOT NODUEL on my hyperactive thyroid. I also had the RAI treatment and am in the same situation as many here. I went from hyper to hypo. Get yourself a couple of books, if you want to know which ones to buy I'll post them here for you.

I would like to warn you of somethings I wish somebody had told me... Now I beat my drum about this, some don't want to listen (denial) but as you remove gluten from your diet, you must also remove SOY. Soy is poison, some don't believe me but, they find out for themselves later the hard way. Doctors and the food industry won't tell you they make millions when we are sick. SOY was the cause of my thyroid problem. Soy is in everything, gum, body creams, beauty products, it's in coffee, tea... the list is too long.

You must read every label -- avoid things like modifed food starch, any kind of starch, natural flavoing, artificial flavoring, veggie broth (in tuna packs and cans) and the list goes on...

A good number of us have developed secondary food allergies or intolerances like I have listed below in my profile. Like night shade and legumes (legumes include soy). I lived gluten & dairy free for about 4 or 5 years and then developed the thyroid problem and the other food allergies.

You might want to start off very basic, then introduce foods back into your diet and see if you can tolerate them. You might have developed many and not know it. And remember some foods are good to speed up the thyroid and others are good to slow it down. I must admit to you it was all very confusing to me. It had my head spinning trying to figure it out when my endo doc was clueless.

Also, beware of binders in your medication. I have a big problem with them, they put corn, dairy and other hidden things. I go to a compounding pharmacist. I have also discovered that many of the main stream thyroid med are cross contaminated with gluten. The companies buys their dye from another comany that puts gluten in their pills, they run the dyes on the same lines. And so we get cross contamination and no one tells us these things. Levoxyl is one of them. I was able to get answers when I called the drug companies and aske the right questions. A compounding pharmacist is the safest way...

Plus there was a recall and a class action law suit with the thyroid companies a few years ago. I honestly believe they haven't worked out their problems yet. And is the reason the thyroid medication that is out there is UN-STABLE and could be the reason none of us get a balanced dose in our system.

Weight loss (or for some weight gain) is part of these disease(s). I have been lucky in the last few weeks/month I have been going to a chiropractor and he has been working with me and I have gained 7 or 8 lbs. I'm up from 98lbs to about 107.5 and feeling a lot better. Oh and hair loss is another issue and vision changes.

I always drink a red bull at the first sign of glutening (I'm having one now!). The caffene brings the energy up to a halfway decent level, and all the b-vitamins help the brainfog. Immediatley after glutening, it's my best weapon. I'm sure the niacin does something good, too. I have problems taking regular vitamins, so it really works for me.

Also a healthy dose of my bentyl and some tylenol help the tummy. I would say immodium is fine.

NUTRITION FACTS & INGREDIENTS

Red Bull Energy Drink

Ingredients: carbonated water, sucrose, glucose, sodium citrate, taurine, glucuronolactone, caffeine, inositol, niacin, D-pantothenol, pyridoxine HCL, vitamin B12, artificial flavours, colors

Nutrition Facts: Serving Size: 8.3 fl. oz Servings per Container: 1 Amount per serving: Calories: 110 Total Fat: 0g Sodium: 200mg Protein: 0g Total Carbohydrates: 28g Sugars: 27g

Red Bull Sugar Free

Ingredients: carbonated water, sodium citrate, taurine, glucuronolactone, caffeine, acesulfame k, aspartame, inositol, xanthan gum, niacinamide, calcium pantothenate, pyridoxine hcl, vitamin b12, artificial flavors, colors

Nutrition Facts: serving size 1 can; calories 10; fat 0g; sodium 200mg; total carb 3g; sugars og; protein less than 1g; niacin 100%; vitamin b6 250%; vitamin b12 80%; pantothenic acid 50%

RED BULL WILL MAKE ME VIOLENTLY SICK. I SEE WHY!

I've heard a lot about ginger. That's an old Indian remedy for an upset stomach. I'll have a go.

GINGER MAKES THINGS WORSE FOR ME.

SIMPLE IS BETTER IN MY CASE. I POP A COUPLE IMMODIUM PILLS OR LIQUID, AND THEN I DRINK A BOTTLE OF PEDILYTE. PEDILYTE IS THE SAFEST WAY TO REPLACE YOUR LOST ELECTROLYTES LOST FROM STEATORRHEA-DIARRHEA. A SMART DOCTOR WILL TELL YOU THAT. IT HAS HELPED ME MORE THEN ANYTHING! TRY IT -- YOU'LL SEE...

nini -- I know what the seizures are like, I get them too. I wouldn't know if I get them in my sleep. I'm all alone. But I will say they are frightening to say the least! Be well!

Sunday, Apr. 23, 2006

Q: What Scares Doctors? A: Being the Patient

What Insiders Know About Our Health-Care System That the Rest of Us Need to Learn

By NANCY GIBBS, AMANDA BOWER

It's easy to imagine that doctors don't get sick. Surely the hygienic shield of the sterile white coat guards them from ever having to put on the flapping gown and flimsy bracelet, climb meekly into the crisp bed and be at the mercy of the U.S. health-care system. And if somehow they did enter the hospital as a patient, physicians ought to have every advantage: an insider's knowledge, access to top specialists, built-in second opinions, no waiting, no insane bureaucratic battles and no loss of identity or dignity when you turn into the "bilateral mastectomy in Room 402." But it doesn't usually work that way. While doctors are often in a better position than most of us to spot the hazards in the hospital and the holes in their care, they can't necessarily fix them. They can't even avoid them when they become patients themselves. When Dr. Lisa Friedman felt the lump in her breast in the summer of 2001, she did--nothing. "I just sat on it," she says, "because I clicked into the mode of being physician, not patient, and I thought, 'Most lumps are not cancer, I'll just watch this.'" That was her first mistake.

By September Friedman had watched long enough. An internist in a practice that covers much of southern Wisconsin, she went to her radiology department to schedule a mammogram. The administrators turned her down: her HMO paid for routine mammograms every two years, and she'd had one 18 months before. "I said, 'Wait a minute, I feel a lump. This is not routine.' They still wouldn't let me do it."

This is the stuff bad movies are made of. Friedman had to appeal to the HMO's board of directors. "I said, 'I'll pay for my own mammogram. Just let me get it done.'" She won her appeal and finally had the test. "They didn't even have to do a biopsy," she says. "The radiologist just looked at it and said, 'Oh, my God. You've got breast cancer.'"

The education of Lisa Friedman, patient, had begun. Like any other patient--and perhaps even more so--she had to drag information out of her physicians. "They were treating me like I was knowledgeable, but they weren't listening to me." When she found out that the cancer had spread to several places in one breast, Friedman told her surgeon there was no need to preserve her breast for cosmetic reasons; she was more concerned that the cancer be entirely removed. She asked for a mastectomy--but she was told that a lumpectomy would do the job fine. "I went along with it," she said. That was her second mistake. Her breast was riddled with tumors. "They ended up doing three lumpectomies. They were cutting away at my breast until I had no breast left. I said, 'Will you please take it all off?'"

Friedman's doctors weren't incompetent. They didn't operate on the wrong breast or give her the wrong drugs or commit any egregious medical errors--and that is the whole point. While there are bad doctors practicing bad medicine who go undetected, that's not what scares other physicians the most. Instead, they have watched the system become deformed over the years by fear of litigation, by insurance costs, by rising competition, by billowing bureaucracy and even by improvements in technology that introduce new risks even as they reduce old ones. So doctors resist having tests done if they aren't absolutely sure they are needed. They weigh the advantages of teaching hospitals at which you're more likely to find the genius diagnostician vs. community hospitals where you may be less likely to bring home a nasty hospital-acquired infection. They avoid having elective surgery in July, when the new doctors are just starting their internships in teaching hospitals, but recognize that older, more experienced physicians may not be up to date on the best standards of care.

Most doctors freely admit that they do everything they can to work the system. "As much as we all value fairness, if you think you can get some special attention for someone who's important to you ... I don't know anybody who would not play that card," says Michael McKee, vice chairman of psychology and psychiatry at the Cleveland Clinic. But talk to doctors about their experiences and you'll be surprised by how little power they have to bend the system to their will.

This is one abiding irony of progress. The most wondrous technology exists that can pinpoint the exact location of a tumor, thread a tiny catheter up into the brain to open a clogged artery, pulverize a kidney stone without breaking the skin. But the simple stuff--like getting an MRI on time, being given the right drugs at the right time, making sure everyone knows which side of your brain to operate on--can cause the biggest problems. "A patient with anything but the simplest needs is traversing a very complicated system across many handoffs and locations and players," says Dr. Donald Berwick, a pediatrician and president of the Institute for Healthcare Improvement. "And as the machine gets more complicated, there are more ways it can break."

HOW TO GET THE RIGHT CARE

"Doctors are terrible patients because they know too much," says Dr. Pamela Gallin, director of pediatric ophthalmology at New York Presbyterian-Columbia Medical Center and author of How to Survive Your Doctor's Care. "They can't be both doctor and patient at the same time." They don't like appearing weak; they are schooled in a culture of stoicism and sacrifice that cautions against complaint. In studies of the behavior of doctors, most admit to writing their own prescriptions, self-diagnosing, avoiding checkups. When they do have to enter a hospital as a patient, they struggle with their role, scanning their bedside monitors and watching their colleagues so closely that everyone can get a little spooked. "I don't like the role reversal," says McKee. "I suppose it's the way you feel when you're 80 or 90 and your kids are taking care of you. It doesn't feel right."

But their innate resistance to treatment carries a message for the rest of us as well. It requires almost a stroke of luck to enter a U.S. hospital and receive precisely the right treatment--no more, and no less. A landmark Rand Corp. study published in 2003 found that adults in the U.S. received, on average, just 54.9% of recommended care for their conditions. Average blood sugar was not measured regularly for 24% of diabetes patients. More than half of all people with hypertension did not have their blood pressure under control; one third of asthma patients eligible to get inhaled steroids did not get them.

Even more insidious is the danger of overtreatment. With well-insured patients inclined toward hypervigilance, doctors afraid of missing something and a reimbursement system that rewards testing over talking, there is embedded in the system a dangerous impulse toward excess. Specialists are typically paid much more to do a procedure than the family doctor who takes the time to talk through the treatment options. A doctor who does a biopsy may be paid as much as $1,600 for 15 minutes' work, notes Dr. Jerome Groopman of Harvard Medical School. "If you're an internist, you can easily spend an hour with a family where a member has been diagnosed with Alzheimer's or breast cancer, and be paid $100. So there's this disconnect between what's valued and reimbursement."

And yet sometimes, talking is the more important and certainly the safer treatment. Ten more minutes spent taking a family history can reveal clues that prevent a misdiagnosis or an unnecessary test; that childhood injury, that illness during a trip abroad, that family history of excessive bleeding. When the orthopedist hears that Mary broke her leg when she was 2 years old, he can hope that the dark spot on her tibia may not be a deadly bone cancer but something more benign, like a Brodie's abscess. He may still remove the abscess but not have to do a whole invasive tumor workup. Doctors talk privately about the cost--economic and physical--of the bias toward overtesting. They are less beguiled by flashy technology, more aware of the risks of even simple procedures and thus more willing to trust their doctor's instincts. If everything in his experience tells your doctor that the lump on the back of your hand is a ganglion and not a malignant tumor, it may not make sense to run the risk that goes with surgical excision. If your baby is born after a very long labor but shows no sign of infection, then agreeing to a spinal tap just to be sure may not always be worth the risk.

Doctors will argue privately that there is not enough watchful waiting and re-examination anymore, partly because patience literally doesn't pay. "The areas in the U.S. with the highest rates of use of hospital beds, intensive-care units, specialist consultations and invasive testing don't have the best quality of care and outcomes," says Berwick. "In fact, they often have the worst. It would be a great advance in both quality and cost if somehow the American public came to understand that 'more care' is not by any means always 'better care,' and that new technologies and hospital stays can sometimes harm more than they help."

HOW TO FIND THE RIGHT DOCTOR

You would think doctors have a great advantage in knowing whom to see for their particular problem, and in one sense they do: they can tap into the medical grapevine to find out who has the best reputation and the most experience with a given procedure. They just have to hope that person isn't their colleague down the hall. In a system that can seem infuriatingly impersonal, a little distance is a valuable thing.

Doctors will often choose not to be patients at their own hospital. There's a risk that when treating a colleague, the physicians may lose their objectivity and the patient his or her privacy. The same holds true for anyone who goes to a doctor who is also a friend; you run the risk of losing both. This is the hard fact that doctors know and patients have a hard time believing: it's not just bad doctors who screw up. To an outsider, everything that happens in a hospital has an air of magic, and the people in the coats seem like wizards. But doctors know that physicians are people too, who can get tired, or distracted, or simply one day fall a millimeter short of perfection, sometimes with disastrous consequences.

Dr. Robert Johnson, a busy Southern California orthopedic surgeon, skidded instantly from doctor to patient one day as he walked toward the operating room, scrubbed hands raised, and slipped on a freshly mopped floor. He broke the scaphoid bone in his right wrist, a bone that anchors all the bones in the hand, especially vital for the physically demanding work of an orthopedic surgeon.

So he called on a friend who was a renowned hand specialist. "I knew the procedure well," he says. "Remove the scar tissue and place a tendon from my own body to stabilize the other hand bones." Naked under his hospital gown, Johnson was rolled into the operating room cracking jokes with his doctor. "I felt bad to be a bother," he says. Together Johnson and his friend decided to go with general anesthesia. An hour later, Johnson woke up and said, laughing, "That was quick!"

But his friend the surgeon was distraught. He had used a tool called a rongeur to chew up the scar tissue and had accidentally chewed up the scaphoid bone--ending Johnson's ability to do orthopedic surgery. "The actual damage happened in a matter of seconds," he says. "I heard later that he had told my wife while I was still under anesthesia. She said, 'You go and fix it before he wakes up!' What she didn't know was that there are some things that can't be fixed."

Although Johnson thinks his case was a "rare aberrant fluke," that's not exactly true. More than 1 in 3 doctors in a 2002 survey by the Harvard School of Public Health reported errors in their own or a family member's medical care. Dr. Robert Wachter, chief of the medical service at the University of California, San Francisco Medical Center, who co-wrote last year's best seller Internal Bleeding: The Truth Behind America's Terrifying Epidemic of Medical Mistakes, says he has seen it all: patients who had the wrong leg amputated, were given the wrong (and deadly) medicines, had surgical instruments left behind in the abdomen. Not all the errors are due to ignorance or incompetence; even the best doctors can make mistakes.

Imagine the dilemma of a physician trying to watch over a loved one when things are going badly. Sherwin Nuland is a celebrity doctor; he was a surgeon for 30 years, teaches surgery and gastroenterology at Yale and is author of How We Die, which won a National Book Award. Last fall his daughter, 21, faced a crisis. She had been born with hydrocephalus--fluid on the brain. A shunt was put in, which worked fine for 21 years until it closed down. "She needed a total of four operations to get this straightened out," Nuland says. The experience tested his self-control. "It helped that I knew what [her doctors] were going through as these complications occurred--how badly it was affecting them emotionally. Because she was the daughter of a senior member of their faculty." But in an emergency, emotion is not an antidote for much of anything. However much we long for Marcus Welby, it is less important to know and love your doctor than to trust and respect him. And your prospects may benefit from his treating you with the cool commitment of a professional rather than the comforting warmth of a friend.

HOW TO FIND THE RIGHT HOSPITAL

Finding the right doctor is important: but so is choosing the right hospital. There are all kinds of guides that can tell you what percentage of heart-attack patients were prescribed beta blockers upon arrival or sell you a report about your particular doctor. The problem is that it takes a doctorate in statistics to sort out the data. "The world's best orthopedic surgeon will be sent everyone's disaster cases," says Wachter. "He may be spectacular and still have worse outcomes than the crummy surgeon across the street who has better outcomes because he gets the slam dunks." Almost every knee replacement results in few days of post-op fever. It's normal--but it can still be cited in a report on the "high rate of postoperative infection."

The most basic challenge facing every patient is knowing when to go to the local community hospital and when to seek out the major teaching center. For all their fame and all-star doctors, teaching hospitals carry risks of their own. The sickest patients often have compromised immune systems and may need to be treated with broad-spectrum antibiotics--which increases the chance that antibiotic-resistant strains of staph and other bacteria will make the rounds of the intensive-care unit. As a rule, doctors decide where to go based on how sick they are. For fairly routine care--a hip replacement, a hernia operation--they will often opt for the convenience and comfort of a community hospital. But if there is any mystery about the symptoms, the rule is Get Thee to a Teaching Hospital. The meals will probably be worse, the beds may not get made on time, a spirit of competent chaos may abide; but for complicated surgeries, the mortality rate is typically lower because the volume of cases is higher and the surgeons are more experienced. Plus, the presence of all those interns and residents has a way of keeping doctors on their toes.

There is, however, at least one exception to the rule.

HOW TO SURVIVE JULY

Harvard's Groopman, who has written three books about the doctor-patient relationship, lived through his own doctor-patient nightmare. It started when his son had a medical emergency in July, which every doctor knows is the worst of all months to go to a teaching hospital. "The new interns and residents begin July 1," he explains. "There's a very morbid joke: don't get sick on the July 4 weekend." But years ago, when he and his wife were new parents, they were visiting her family in Connecticut for the holiday when their 9-month-old son became cranky, ran a fever, got diarrhea. They went to a local pediatrician, who essentially said, 'Oh, it's nothing: you're just neurotic doctor-parents. Give him some Tylenol.'"

By the time they arrived back in Boston, it was clear to both of them that the baby was very sick. "He was flailing and arching his knees to his chest. So we rushed to the emergency room of the Children's Hospital." Their son was seen by a brand-new surgical resident, who diagnosed an intestinal obstruction. "This resident said to my wife--this is now midnight--'Well, in my experience, this can wait until morning.'" Since his experience at that point in his residency amounted to roughly three days on the job, the Groopmans pulled rank. They called someone who called someone who happened to be home on the holiday, and they wound up with a senior surgeon who came in, did an emergency operation at 3 a.m. and, Groopman says, saved his son's life.

That was an extreme lesson in the value of experience; no one recommends seeking out doctors who are brand new on the job, and doctors admit to scheduling elective surgery--even planning childbirth--around the intern calendar. This is not paranoia: the average major teaching hospital typically sees a 4% jump in its risk-adjusted mortality rate in the summer, according to the National Bureau of Economic Research. But there is a larger issue that doctors argue about: which matters more, information or experience? Broadly speaking, a younger doctor is likely to have been trained in the newest surgical procedures, be more up to date on the literature, and be more open to new techniques. Older doctors have had more years to develop the instinctive diagnostic skills that can make the difference in complicated cases and may be skeptical of innovations that are driven more by marketing than medicine.

Older doctors are also worried that rules designed to make young doctors' lives easier may make patients' outcomes worse. Back in the day, grizzled veterans say, a medical resident was called that for a reason: he--and they were all men--actually lived in the hospital. "We were aggressive about our training," recalls a former surgical resident at Boston's Brigham and Women's Hospital. "The only thing wrong with every other night call was that you missed half the good cases." But these long hours of dedication came at a cost: tired doctors made mistakes. Studies showed that long work hours increased stress, depression, pregnancy-related complications, car wrecks and damage to residents' morale and personal life. So now residents' hours are limited to 80-hr. workweeks averaged over a month, in shifts that are limited to 24 hours of patient care, with at least 1 day off in 7. Remaining on call in the hospital is limited to every third night. Hospitals that fail to comply can lose their accreditation.

The reforms made intuitive sense; but the unintended result, older doctors warn, is a 9-to-5 mentality that detaches the doctor from the patient. They fear that young doctors don't get the experience they need or build the instincts and muscle memory from performing procedures so many times that they can do them in their sleep. Even the residents may agree: in a 2006 study in the American Journal of Medicine, both residents and attending physicians reported that they thought the risk of bad things happening because of fragmentation of care was greater than the risk from fatigue due to excess work hours. Other residents say that while they may feel more rested, they sense that they are not learning as much or as fast as they need to.

"I know that I will not like it 20 years from now when I'm 68 and having to be taken care of by these guys," says Dr. Paul Shekelle, a professor of medicine at UCLA. "It's all shift work now. When 5 o'clock comes, whatever it is they're doing, they just sign it all out to the 5 o'clock person. It's eroding the sense of duty, or commitment to being the person responsible for a patient's care."

But younger physicians may have other advantages--like a fresher sense of the latest standards of care. Many doctors have concluded that there is something of a sweet spot on the age-education-experience continuum. They seek out clinicians who are no more than 10 years out of residency, old enough to have some mileage, young enough to be up to speed. There is actually some hard data for this rule. A review published last year in the Annals of Internal Medicine examined the connection between a doctor's years in practice and the quality of care he or she provided. To the surprise of everyone--including the review's author, Harvard Medical School's Dr. Niteesh Choudhry--more than half the studies found decreasing performance with increasing years in practice for all outcomes assessed; only 4% found increasing performance with increasing age for some or all outcomes. One study found that for heart-attack patients, mortality increased 0.5% for every year the physician had been out of medical school.

HOW TO SURVIVE TECHNOLOGY

We think of hospitals as cathedrals of science, yet doctors walk around with their pockets stuffed with 3-by-5 cards on which they write patient information; when they sign off for the day they read from the card to the doctor coming on duty. "My pizza parlor is more thoroughly computerized than most of health care," says Berwick. It's easy to see the advantage of giving everyone easy access to a patient's history and test results. But getting there can be painful. Enter a hospital when it is in the process of introducing more computers, they say, and you can hear the sound of nurses growling. Doctors using laptops sometimes have to wrestle with incompatible systems, manually retyping lab results from one computer into another.

The introduction of computerized patient information and medication orders is meant to reduce "adverse drug events" and ensure that the patient's history and treatment notes are available to everyone who needs them. But progress does not always equal safety. "Technology should remove the burden, but you can get problems. You can hide behind technology and spend more time talking to your computer than to your patients," says Dr. Albert Wu, a professor of medicine at Johns Hopkins. "And as with any new thing, people screw things up worse before they make things better." Doctors say there is a temptation to trust computers too much: they seem objective and infallible, but if the wrong information is entered in the first place, or the bar-coded wristband is put on the wrong patient, it can be harder to prevent mistakes down the line. In one case study, a patient with pneumonia had his wristband mixed up with a diabetic patient and came very close to being given a fatal dose of insulin.

This is why doctors are reluctant to be hands-off when it comes to a loved one's care. Until proper safeguards are built into the system, what a patient needs most, many doctors agree, is a sentinel--someone to take notice, be an advocate, ask questions. Now that the family doctor has been squeezed out of that role, someone else has to step in. But even a doctor--family member may not be able to counter the complexity of the system. Dr. Berwick of the Institute for Healthcare Improvement tells the story of his wife Ann's experience when she developed symptoms of a rare spinal-cord problem at a leading hospital. His concern was not just how she was treated; it was that so little of what happened to her was unusual. Despite his best efforts, tests were repeated unnecessarily, data were misread, information was misplaced. Things weren't just slipping through the cracks: the cracks were so big, there was no solid ground.

An attending neurologist said one drug should be started immediately, that "time is of the essence." That was on a Thursday morning at 10 a.m. The first dose was given 60 hours later, on Saturday night at 10 p.m. "Nothing I could do, nothing I did, nothing I could think of made any difference," Berwick said in a speech to colleagues. "It nearly drove me mad." One medication was discontinued by a physician's order on the first day of admission and yet was brought by a nurse every single evening for 14 days straight. "No day passed--not one--without a medication error," Berwick remembers. "Most weren't serious, but they scared us." Drugs that failed to help during one hospital admission were presented as a fresh, hopeful idea the next time. If that could happen to a doctor's wife in a top hospital, he says, "I wonder more than ever what the average must be like. The errors were not rare. They were the norm."

After he publicized his experiences, Berwick was besieged by other doctors saying, "If you think that's terrifying, wait until you hear my story." One distinguished professor of medicine whose wife was hospitalized in a great university hospital was too frightened to leave her bedside. "I felt that if I was not there, something awful would happen to her," he told Berwick. "I needed to defend her from the care."

It's hard to find a doctor who doesn't worry about how medicine is changing, since they suffer at both ends: as providers of health care and as consumers. "What scares me most about the current medical environment is complacency with the status quo," says Martin Palmeri, an internal medicine resident at Dartmouth-Hitchcock Medical Center in New Hampshire. Burgeoning bureaucracies, managed care, the mass production of health-care services and a worsening malpractice climate only strain the doctor-patient relationship. In this environment, the patient, typically a physician's source of inspiration, can become the source of frustration. "When I refer one of my family members to someone," Palmeri says, "I want to make sure that they are the type of physician who leaves no stone unturned and will burn the midnight oil if need be to ensure the highest-quality care possible."

What frightens doctors--young ones like Palmeri as well as older ones--is that those doctors may be harder and harder to find. Scientific knowledge improves, but the care doesn't keep up; it is easier to gather gigabytes of information than to acquire the judgment to apply it wisely. It might comfort the rest of us to think that with just a little more knowledge or a personal doctor at our side, we could get the best out of America's extraordinary health-care system without suffering from its gaps and failures. But since even an insider can suffer, we are left with the much harder challenge: to fix the system for everyone.

With reporting by With reporting by Coco Masters/ New York

Open Original Shared Link

If no -one wants to write to her and ask -- I will... Just let me know...

I remember her story and read her first book about the boat the 'trashman'. I know what it feels like being at the mercy of the ocean. I'm a boater, have been my whole life, learned to swim before I learn to walk. And I've made the same trip from the NE to south Florida by yacht, and the gulf stream crossing many many times... and can imagine what it must have been like for them. I can't imagaine being a celiac and a drift for days with nothing... I've been in 12' seas and no navigational tools, only a compass in the middle if a fierce storm.

It's not clear by Larry Kings interview who was the Celiac...

Open Original Shared Link It doesn't say it where I'm looking on their web iste, but on the outside of the label it is made with SOY in it too.

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Lynne -- Sorry about the job...

I'm going to speak for all of us here, "WE NEED YOU HERE!" If you were to take a job, even if your were doing consulting or something -- we all really need you here. You add so much to this site you help more people then you know. You have given so much to so many of us. God has a plan -- he want you to help us with celiac disease.

Patti -- I feel the i·so·la·tion too.

Most all of you have families and/or a hubby. I don't! My daddyO (85) only winters with me.

Dating with celiac disease? Celiac gives a new meaning to high-maintenance.

I hate having celiac disease and being alone!

Thank you Patti for finding the transcripts. I just read the transcripts and wow quite a story. It is amazing to say the least, I remember when this happened back in the early 80s. I also read her first book.

From what I can gather the person with celiac disease didn't come out on the show. This is what was said...

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""""KING: boy, that's all from "I Shouldn't Be Alive," a weekly on the Discovery Channel. Our guest is Deborah Scaling Kiley, author of, "No Victims, Only Survivors."

You have a foundation with that name, right?

KILEY: We're working on it right now. My lawyers are establishing it right now. It's really my goal, through this book, to really work with people and take them from that victimization into being survivors.

I tell stories of many different survivors here, and breast cancer, celiac's disease, there's diabetes. Yossi's story, who is here tonight, is also in there. """"

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If Deborah “Debbie” Kiley Blackmon speak of celiac disease in her book -- we need her as our celiac disease spokesperson!

I'll link her web site and if anyone wants to write and ask her more questions... Open Original Shared Link Click on the link 'the author' then choose 'eMail the author'

Thanx for the article it looks good...

For some reason you must subscribe. And my computer won't allow me...

Is there anyway you can copy-and-paste the article on this thread?

((((hugs))))

They only stuck you 4 times? The test has 5 components... hope they did it right.

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If they have a lot of patients with celiac disease ask to speak with one or two of them, or give them your phone number and have them pass it on. You'll see no-one will call you. ...cause they [all] lie! its all about $$$

mmc -- I pray you are feeling better and you get some answers... Are you going gluten free now?

When I found out I was gluten intolerant.....I also found out I was hypothyroid.

I am just wondering who else has thyroid problems as well!

.....at 30 had a total hysterectomy, they gave me hormore replacement which a short time later they diagnoses hypothyroidism. They put me on synthroid ....

I had hyperthyroid (Graves) and had radioactive iodine treatment to basically destroy my thyroid.

Did most of u have thyroid problems before ur DX of celiac?

Is there a chance that I can develop a thyroid problem even after going gluten-free?

I once read that going prematurely grey is a symptom of thyroid disease. Has anyone else read this? Has anyone else experienced this? I went totally grey in my early 20's

I think its a real possibility the Graves will get better after being gluten-free for awhile. I wish I had that chance...I finally gave in to RAI (why do they always push for this?) and I regret it now. I felt like my symptoms were because of the Graves and my meds didnt seem to be working anymore so thats why I gave in. My symptoms had nothing to do with the Graves....it was gluten and other food intolerances. Now I have no thyroid and I didnt get any better from the treatment. I suffered 2 more years after RAI before I learned about gluten.

Hope I didn't chop-up everyone’s post. Thank you for creating this thread. I feel that there is a connection between celiac disease, thyroid and our hormones. I've tried to speak with my thyroid doctor and the gastro doc, but it's like talking to 'dead-air'.

As a kid I was hyperactive and all of my life plenty of energy. I had a total hysterectomy in my early 30's I went on HRT the patch Vivelle 0.05 for years. In 1994 I was DX with what you can see in my profile below. I lived with it I was in a loving environment, lived a wonderful stress free life, life was really really good.

Then in 2001 stress hit like thunderbolts one after-another, it was at the exact time I stopped HRT I immediately came down with extreme celiac disease symptoms and I would soon developed borderline hyper thyroid.

To be more specific my gynecologist had given me some Vivelle HRT samples of what I was taking (he thought). I didn’t realize until afterwards it was double dose of what I had taken for 10-yrs. It made me feel extremely ill. I had wanted to stop taking HRT because of the media-hype and the controversy surrounded by should-we, shouldn’t-we, thing at the time. It was then when I finally peeled that patch off totally because my friends kept telling me “…the patch is what’s really making you sick!” So I did. I took it off and stopped HRT. Those symptoms disappeared! At that time I was under major traumatic stress. I ate poorly to say the least. My life was upside down and it had become a horrible living nightmare. And the celiac disease symptoms appeared thru seizures. I felt like I was dying (about 3 months) until an angel whispered in my ear about celiac disease and dairy allergies. I changed my diet and life overnight went gluten-dairy free for 5-years. I was doing well. Thought this celiac disease was a cake-walk, I have will-power.

Nope! Not the case, these things I believe were triggers. Post traumatic stress, more stress, no HRT, the body goes into shock! Immune system flips-out.

Did the celiac disease come first? Or did the hyper thyroid? That’s what I keep asking my doctors!

And these secondary food allergies, no-one told me about them 6-yrs ago? Where did they suddenly come from when I developed the thyroid malfunction? I know many of you are sick of me banging my drum about ‘soy is poison’. I wish someone told me 6 years ago I believe I could have prevented this. What I’ve read go hand-and-hand with this. They say 60% menopausal woman get thyroid problems and soy is a problem for them. When I went gluten dairy free everything I ate had soy hidden or otherwise for those 5-years, then I grew hot nodules. Maybe no connection, but I believe there is one.

Just like 'Rachel--24' I had the RAI and feel the same way she does. They destroyed my thyroid all together and our only option is life time medication. And that medication is poisoned with gluten. The die the drug manufactures are using are CC w/gluten. It is what I’m finding in my research. And the thyroid medications aren't stable that’s why we can’t find a balance.

Yes! My hair has changed too it more gray a coarser texture, and more resistant to color. And you are right only your hairdresser should know for sure! [giggle]

I'm going to my Dr this afternoon, been taking levsin for stomach pain, but it doesn't do much..do you take anything that helps?

Open Original Shared Link This is side effectes and etc. I can't see what is in it like binders. She said she was making rice when it happened. So of us Celiac's have a problem with other things like rice, corn, soy and etc...

Open Original Shared Link here we go -- it has sugar, corn and dairy in it. I don't know if you have a problem with them. And who knows who they buy the dyes for the pills. I have found many times the dyes are C/C with gluten.

Does it feel like an ulcer? I take ZANTAC 150 a few times a day only when I need it.

Does it feel like your colon is in s-p-a-z-a-m? I swear by DICYCLOMINE. When I would feel it (one of one of my episodes were I would have a seizure) coming on I'd pop one of these and in 15-30 minutes I could function again. DICYCLOMINE HCI 10MG CAPSULES. I call them my little blue wonder pills. These have helped me for the first 5 years of celiac disease. Since my thyroid flair-up (last year-or-so) I seem to get spots (like DH) when I take them, they go away the next day... But this drug has helped me with celiac disease. It works for stomach ulcers, spatic colon, and bladder incontense too.

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I'm disappointed I can not eat this -- I can't eat nuts, corn, dairy or soy. The author says that these things are bad for many of us, but goes on to give the recipes anyway. They just don't get it do they? I really have a problem with SOY or their use of soy.... I will post the article below.

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Gluten-free diet helps to control celiac disease

By JAN NORRIS

Palm Beach Post Staff Writer

Thursday, April 27, 2006

It used to be that gluten-free products were almost impossible to find. That put a crimp in the diets and cooking process for many with celiac disease, which causes those people trouble with whole grains, nuts, and certain other starches.

Lee Tobin, a team leader for the gluten-free Bakehouse of Whole Foods Market, knows it very well — he found out he had the disease a decade ago.

"It can take years for a diagnosis," he said. "It can mimic so many other diseases that it's hard to catch, and back then, celiac wasn't a common diagnosis."

A few years ago, a prominent study was published, however, and showed that 1 in 133 people, and possible more, has the disease.

Celiac, also known as sprue, is an auto-immune disorder in which the body attacks the lining of the small intestine. Nutrients in foods pass through without being absorbed, and malnutrition can cause a number of other problems that make finding the root cause, celiac, especially tricky.

The new study and a new blood test for the disease, made doctors more aware, however. "They look for it more often, now," Tobin said.

There's no cure for it yet, but a strict diet helps the symptoms and restores nutrition, he said. Those with celiac must avoid gluten proteins in primarily wheat, but also nuts, dairy products, eggs, soy, fish and shellfish.

"When I was diagnosed, there were only a few companies producing baked goods that are gluten free," he said. "That included bread, crackers, cakes, cookies. What you miss most are the carbs: pizza, breads, muffins, cakes, pastas — all the good stuff."

He was working at the Chapel Hill, N.C., Whole Foods bakery at the time, and had access to many foods that were minimally processed. Still, certain foods were difficult items to find commercially.

Tobin began cooking and baking for himself, and a few others at the store's bakeshop. His breads and other baked goods eventually caught the eye of Whole Foods purchasers, and he began baking for the store.

"I got permission to bake one day a week." It was difficult, he said. "I would come in on Tuesday afternoon, and clean all the equipment and surfaces. I had my own cart with my own ingredients: rice flour, tapioca starch, cornmeal. I'd have to take everything in and out again."

The products took off, however, and two years ago, he convinced Whole Foods the market was such he could use a facility of his own. They turned over a warehouse for a gluten-free bakeshop in Morristown, N.C., that Tobin now oversees. His gluten-free muffins, breads, and cookies are sold in Whole Foods.

"But the people with the hardest time on the diet are those who haven't learned to cook yet, who eat out a lot," he said. He recommends research into the many cookbooks now available, and joining groups that support celiac patients.

Tobin is coming to Whole Foods in Boca Raton and Palm Beach Gardens this week to teach and may be available for store tours to help shoppers choose gluten-free products. His recipes also are on the store's Web site, along with a list of the 800-plus gluten free products the stores carry.

Gluten-free recipes

Here are a few gluten-free recipes to try from Whole Foods Market. The ingredients for making these are available at Whole Foods, and other natural food stores. Other recipes are available on their website, www.wholefoodsmarket.com; search for gluten-free.

This is a tender, flaky pie crust that is reminiscent of a shortbread cookie.

Gluten-free pie crust

1 cup white rice flour

1/2 cup brown rice flour

1/2 cup arrowroot

6 tablespoons tapioca starch

6 tablespoons potato starch flour

1/2 teaspoon salt

1 teaspoon xanthan gum

1 teaspoon baking powder

2 sticks butter, cut into 1/2-inch pieces

1/2 to 1 tablespoon ice water

Options: Replace the butter with non-hydrogenated margarine for a dairy-free or vegan version

Place the rice flours, arrowroot, tapioca starch, potato starch flour, salt, xanthan gum and baking powder in the bowl of a food processor and process until all ingredients are thoroughly combined. Add the butter bits and process until the mixture almost gathers together. It will be a little dry.

At this point, while processor is running, drizzle in the water. If the dough seems too moist, turn it out onto a board and coat it with a little potato starch. Wrap dough in plastic wrap and refrigerate for 2 hours or overnight. This dough can be rolled out using potato starch or rice flour to prevent sticking as you go along, or pressed with fingers into a pie plate.

Spray pie plate with canola cooking spray first to help prevent sticking. Fill dough with filling of choice and bake as instructed.

Serves 8 (Makes one 9-inch pie shell.)

Per serving: 380 calories (210 from fat), 23g total fat, 15g saturated fat, 2g protein, 41g total carbohydrate (1g dietary fiber, 0g sugar), 60mg cholesterol, 210mg sodium

This gluten-free version of carrot zucchini cupcakes replaces the wheat flour with rice flour and adds ground flax seed which gives the cupcakes body and texture as well as providing omega-3 fatty acids. Note: This recipe contains walnuts; easily omitted.

Gluten-free carrot zucchini cupcakes

1/2 cup expeller-pressed canola oil

1/2 cup unbleached, evaporated cane sugar

1/4 cup unsweetened organic applesauce

2 large organic eggs

1 cup organic rice flour (either white or brown rice flour)

1/2 cup organic flax seed meal

3/4 teaspoon baking soda

1 teaspoon cinnamon

1/4 teaspoon salt

2 medium organic carrots, grated

1/2 medium organic zucchini, grated

1/2 cup chopped walnuts, optional

For frosting:

1/2 cup organic cream cheese, softened

1 2/3 cups powdered sugar, sifted, (natural and unbleached)

2 teaspoons freshly squeezed lime juice

Preheat oven to 400°F.

In a large mixing bowl, beat the oil with the sugar and apple sauce. Add eggs. In a separate bowl, mix together the rice flour, ground flax seed, baking soda, cinnamon and salt. Add to the liquid ingredients. Fold in carrots, zucchini and nuts. Spoon into muffin cups filling 3/4 full. Bake 20 to 25 minutes or until done when tested with a toothpick. Cool on a wire rack.

For frosting, beat the softened cream cheese with the powdered sugar. Add lime juice. Ice the cupcakes with a blunt knife. Garnish each with walnut half, if desired.

Makes 12 cupcakes.

Per serving (100g-weight): 340 calories (170 from fat), 19g total fat, 3.5g saturated fat, 3g dietary fiber, 5g protein, 39g carbohydrate, 45mg cholesterol, 150mg sodium

A gluten-free turkey dressing starts with a delicious gluten-free cornbread. This version is perfect alongside a steaming bowl of stew or chili, as well. If making stuffing, prepare the cornbread a day ahead, cut into 1-inch cubes and allow to become stale overnight.

Gluten-free cornbread

1 tablespoon butter

1 cup corn meal

1/2 cup soy flour

1/2 cup brown rice flour

1/2 teaspoon salt

2 tablespoons brown sugar

1 teaspoon baking soda

1 egg

1 cup milk

Preheat oven to 350°. Place the butter in a 9x9 square baking pan or in a small cast iron skillet. Put the pan in the preheating oven until butter is melted. Remove from oven and tilt the pan back and forth to coat. Set aside.

Mix corn meal, soy flour, brown rice flour, salt, brown sugar and baking soda together. Add the egg, milk and melted butter. Combine with a few strokes, not overbeating. Pour into prepared pan and bake for 25 to 30 minutes.

Serves 6.

Per serving (98g-weight): 210 calories (40 from fat), 4.5g total fat, 2g saturated fat, 9g protein, 35g total carbohydrate (3g dietary fiber, 5g sugar), 40mg cholesterol, 450mg sodium

Lee Tobin will be at Whole Foods Market in Palm Beach Gardens today, 11 a.m., and in Boca Raton's market Friday, 10 a.m. and 2 p.m., giving one-hour cooking classes in gluten-free recipes.

Class size is limited. Customers must register in advance at the Customer Service Desk at each store, or by calling the store directly. A gluten-free product tasting will be held in all Whole Foods Markets on April 29, from 1-4 p.m.

•Palm Beach Gardens Whole Foods: 11701 Lake Victoria Gardens Drive, Palm Beach Gardens. Phone: (561) 691-8550.

•Boca Raton Whole Foods: 1400 Glades Road, Suite 110, Boca Raton. Phone: (561) 447-0000.

Information on celiac disease

The Celiac Sprue Association, in Nebraska: www.csaceliacs.org

Celiac Disease Foundation: www.celiac.org

Celiac.com: a web resource linking to other groups: www.celiac.com

There's this little Itallian hole in the wall place by me, the owner is straight from Italy - his accent alone is worth going .... but oh, I so miss the Gnocchi Sorrento with extra garlicy bread. (drooling!)

Sigh....

I miss Italian food and my family! Never liked Krispy Kreme donuts hard-like-rock. Yuck! Give me a cannolli and capuccino anyday! Just not today...

Call the company and ask questions. Ask if they use gluten in there other products? Because you can be cross contaminated with what they are running in the lines to produce the foods.

I had the same thing happen another company. I called and found out what was in the ingredients and if it had natural ingredients or natural flavoring it will pose a problem for many of us.

Call Sams Club and ask Open Original Shared Link they have to tell us what is in the food we eat. It's a new law.

Also smoked food have nitrate in it. It is a big no no for me. I'll get a migraine for sure!

I'd beware of SOY. All the non-dairy alternative with SOY caused me a huge problem with my thyroid. I was living gluten and dairy free for 5 years but ate lots of soy. It's in everything and you have no idea. There are many threats here pro / con on soy. I believe it's poison.

Watch out for those flavored soy creamers they have hidden things in "natural flavoring or natural ingredients" If you get sick and you don't know why it could be hidden in the ingredients. Or they are cross contaminated because they run gluten products on the same factory lines.

Anyone have any secrets how to flavor their coffee the natural way?

I have been making my flavored coffee from scratch. What I have been doing is adding things to the coffee grounds before I brew the coffee.

Like I have been adding a few (3 or 4) of the little star anise to it. You can use fennel too. Its so so good. You can use cin·na·mon too. And I add a cap full of vanilla extract flavoring to a cup it's really good too. Also I have been taking frozen raspberries, or blueberries and cooking them just a bit in the microwave, then adding them to the coffee grinds to be brewed in the coffee maker.

Anyone else flavoring their coffee this way?