Friday, May 25, 2007
exerpt from the book, "Could It Be B12? An Epidemic of Misdiagnoses"
by Sally M. Pacholok, R.N. and Jeffrey J. Stuart, D.O.
"In 1983, I was the picture of health. I looked fit, I felt great, and I had no idea that a silent crippler lurked inside me, stealthily damaging my brain, nerves, blood vessels, and in fact nearly every organ in my body.
Because of my medical training, however, I noticed small signs that something wasn’t right, and I knew enough to be worried even when my doctors dismissed those signs as “nothing to worry about.” I pursued the few clues that my potentially deadly disease left, eventually obtaining a diagnosis of pernicious anemia (an autoimmune form of vitamin B12 deficiency), and as a result I’ll never suffer the terrible symptoms that this disorder can cause.
Millions of other victims of B12 deficiency—many of them also victims of doctors who mistakenly ruled out B12 deficiency with serum B12 tests or blood smears, or never considered the diagnosis at all—aren’t as lucky. Some are infants and toddlers, left developmentally disabled for life. Some are young adults, mistakenly diagnosed as having multiple sclerosis or told, erroneously, that they are “incurably” infertile. Others are middle-aged men and women, tormented by balance problems, numb hands or feet, or mysterious shooting leg pains so agonizing that they can barely walk. Some are diagnosed with early-onset dementia or pre-Parkinson’s disease in their thirties or forties. Some are people so depressed that they try to kill themselves. Some appear to be full-blown schizophrenics. And still others are seniors living out their days in nursing homes, because their doctors think they have Alzheimer’s disease.
It’s too late to completely reverse the symptoms of many of these people—but it’s not too late to protect yourself, or the people you love, against a similarly tragic fate. In fact, it’s extraordinarily simple to prevent or completely reverse the symptoms of B12 deficiency if the deficiency is discovered in time. But this condition isn’t like other vitamin deficiencies, and simply taking a standard multivitamin pill won’t always protect you; instead, you need an accurate diagnosis and medical treatment. And getting a diagnosis isn’t always easy, as I know from experience.
I had no idea that an invisible disease was attacking my body when I went for a pre-employment physical examination back in 1983, when I was just nineteen. The first clue came when the examining physician reviewed my blood tests and commented on my abnormally large red blood cells. (In retrospect, I may owe my life to the fact that this test came back positive. Many people suffer neurological damage decades before their blood tests become abnormal, and by then it’s too late.)
“What kind of diet do you eat?” the doctor asked when he saw my results. When I said that I didn’t like vegetables, he told me to eat more of them, dismissing my blood abnormality as merely a sign of a diet low in folic acid.
One month later, another doctor commented again on my large red blood cells, but concluded that my lab results were “insignificant.” Like the first doctor, this physician sent me on my way, unaware that he’d just missed diagnosing a disease that could destroy my brain, cripple my body, or even kill me.
Two years later, in nursing school, I bought a manual describing laboratory tests and their meanings. In the section on “macrocytosis”—the medical term for unusually large red blood cells—the manual outlined two different problems, folic acid deficiency and B12 deficiency, which could cause this abnormality. Since I loved B12 -rich meat and didn’t like folate-rich vegetables, I could see why my first doctor picked low folic acid as a likely culprit in my case. But I wondered why he’d never considered B12 deficiency as well.
Thinking to myself, “It can’t hurt to be sure,” I persuaded a doctor at my hospital to order a serum folate and serum B12 level for me. That night, when I mentioned the tests to my parents, my father surprised me by saying that my grandfather had been diagnosed with pernicious anemia—the most well-known, although not the most common, cause of B12 deficiency—back in the 1960s. So I wasn’t completely caught off-guard a few days later when my own B12 test came back low. I started receiving B12 shots, grateful that I’d obtained a diagnosis before I suffered any symptoms.
But that wasn’t the end of my story. Two years later, when I needed surgery, I mentioned my B12 deficiency to my surgeon. Skeptical because she thought I was “awfully young” to have this problem, she sent me to a hematologist, who dismissed the idea that I had a B12 problem, in spite of my earlier diagnosis and positive findings. (In fact, the hematologist’s chart notes, which I read surreptitiously at a later visit—a nurse’s instinct!—suggested that I was merely a hysterical female, imagining problems that didn’t exist.) I insisted he run tests anyway.
The hematologist had changed his mind by the time his office called me, a week later, asking me to come in “right away.” By then, the tests he’d ordered had revealed that I indeed had juvenile pernicious anemia. In fact, he exclaimed exuberantly, I was the youngest patient he’d ever seen with pernicious anemia in his twenty years of practice. I felt like a rare freak of nature. This time around, the doctor was friendly and informative—and, I sensed, secretly relieved that I’d insisted he verify my earlier diagnosis. He certainly wouldn’t have detected my problem on his own, even with all of the information I’d given him on my first visit, because that surreptitous glance at my chart showed that his suspected diagnoses didn’t even include B12 deficiency.
In short, although I’d virtually handed this doctor my diagnosis, he nearly missed it. If I’d come to him without the benefit of my nursing training or without already knowing that I had a history of B12 deficiency, his failure could have injured or killed me—because, if I had passively accepted his initial opinion, I would have stopped receiving the B12 shots that saved my body from the ravages of pernicious anemia. And yet, in a way, I’m thankful to him.
Why? Because his disbelief led me to ponder an important question: How many other people suffer or die, because their doctors don’t consider the simple diagnosis of B12 deficiency? I was lucky, because I had enlarged red blood cells—the easiest-to-spot sign of the problem—and a family history of pernicious anemia. Yet despite these red flags, this doctor, as well as others, missed the correct diagnosis. Unlike me, a third of people with B12 deficiency never develop either large red blood cells or anemia, meaning that their disease is invisible to routine blood tests. In addition, most have no known family history of B12 deficiency. I wondered: Were doctors misdiagnosing such patients on a regular basis?
My curiosity developed, over time, into nearly two decades of research on the scope of B12 deficiency. I became an expert, reading every textbook and journal article I could get my hands on, and making connections with both clinical doctors specializing in B12 deficiency and scientists involved in B12 research. My husband Jeffrey, an emergency medicine physician, also conducted research to determine the percentage of B12 -deficient patients seen in his emergency department. What we learned about the prevalence of B12 deficiency, the havoc it wreaks on the entire body, and the number of undiagnosed cases, is alarming.
B12 deficiency is very common—not just in seniors and middle-aged people, but even in teens, children, and infants. As many as 20 percent of people over sixty (and, according to one new study, 40 percent of seniors with severe mental or physical problems) are suffering, most of them unknowingly, from its ravages. Thousands of young children, teens, and young adults have borderline B12 levels, below what’s considered necessary to keep their brains functioning optimally. And millions of people labeled as having Alzheimer’s, multiple sclerosis, early-stage Parkinson’s disease, autism, learning disability, depression, bipolar disorder, vision loss, schizophrenia, diabetic neuropathy, and other severe and often incurable disorders could actually be victims of the easily diagnosable, treatable, and (in its early stages) completely curable problem of B12 deficiency.
Initially I was tremendously excited by the extensive research proving that B12 deficiency plays a role in so many seemingly hopeless problems. That’s because this is a problem that’s simple to fix. It’s an inexpensive problem as well, with treatment costing only a few dollars a month—pocket change, compared to the expense of other medical conditions. Thus, diagnosing and treating patients with B12 deficiency could both reduce the pain and suffering of these patients and cut medical care costs—a win-win situation, in my opinion.
My excitement was short-lived, however, because most of the doctors I worked with didn’t care about an epidemic of undiagnosed B12 deficiency. They didn’t care that the serum-B12 test available to diagnose the problem frequently was inaccurate and misleading. They didn’t care about the growing number of journal articles warning about the high costs, both to patients and to society, of doctors’ rampant failure to identify this problem. Indeed, they accused me of “playing doctor,” and balked at ordering accurate B12 tests, even for patients with clear signs and symptoms of the disorder. Eventually, I was told, in no uncertain terms, to drop the subject or lose my job.
Their attitude didn’t stem simply from the fact that I am a nurse, rather than a physician (although that didn’t help). My husband encountered a similar level of apathy, even when he showed his colleagues study data revealing that large numbers of his own facility’s patients suffered from undetected B12 deficiency. Later I learned that other physicians had encountered the same negative response from their own colleagues.
Faced with an impenetrable wall of apathy and eventually outright hostility, I slowly and quietly gave up. What else could I do? Those with the ability to diagnose and fight this disease chose instead to ignore it. Noted physicians had fought the battle to bring the B12 -deficiency epidemic to light, and had lost. What chance did I have of making a difference?
My silent surrender lasted until the day I was asked to discharge a patient who’d been labeled by the preceding shift as a “frequent flyer,” a “drug-seeker,” and a patient who “did not want to go home.” When I examined this woman and reviewed her laboratory results and medical history, I saw painfully obvious indications of B12 deficiency—evidence that even a first-year medical student should be able to recognize. I also noted the complete absence of any effort by her doctors to test her accurately for this problem during her previous hospital admissions, or even to recommend such testing to her family physician. This sad and frightened woman had suffered for years from crippling and seemingly mysterious symptoms, every one of which could be explained by B12 deficiency, and yet no one had correctly evaluated her for the disorder. Instead, they’d simply labeled her as nuts.
She wasn’t the first patient I’d seen dismissed by doctors who overlooked the signs and symptoms of B12 deficiency. In fact, she was only the latest in a long line of patients written off as hopeless by medical professionals who’d failed to diagnose a life-threatening, and very common, medical problem. Indeed, I’d seen far worse cases, including patients who were on the verge of death, or in a permanent state of dementia, as a result of undiagnosed B12 deficiency. Each case broke my heart. But this time, as I wrote up the discharge papers for this woman who’d received no real help and no real treatment—only a condescending response from her doctors and nurses, a large hospital bill, and a possible death sentence—my anger hit critical mass.
I knew that my own health and life had hung in the balance years earlier, when doctors told me that my troubling lab test findings were “insignificant.” Now, on a regular basis, I was watching other patients being sentenced to death or disability by the doctors they trusted. I knew that many of these patients would wind up back in our hospital some day with strokes, dementia, depression, fall-caused fractures, the need for blood transfusions, and other problems stemming from undiagnosed B12 deficiency.
I could no longer stand by and be a silent accomplice to an epidemic of apathy and non-diagnosis that is leaving millions of young and old patients crippled or dead. As a medical professional, I’d long since come to terms with the daily tragedy of lives ruined by diseases that can’t be prevented or cured. But I could not come to terms with the continuing parade of lives ruined by the failure to detect and treat a simple-to-identify, simple-to-treat, simple-to-cure disorder. Neither could my husband, a physician who finds it reprehensible to refuse a patient the couple of tests that could prevent nearly every case of disability or death due to B12 deficiency.
This book was born out of our frustration and anger over these lost lives. But it was also born out of hope—the hope that we can help many current and potential victims of B12 deficiency by putting this information in the hands of sufferers and their families, as well as in the hands of concerned medical professionals.
If you are a medical consumer, this book will empower you to protect yourself and your family members, by helping you to identify loved ones at risk for B12 deficiency, and to obtain a real diagnosis and real treatment before it’s too late. And if you are a medical professional, we hope you will examine the compelling body of research reviewed in this book and make complete B12 screening (not just often-inaccurate serum B12 levels and blood smears) part of your standard practice. The hundreds of studies we cite, published in major and respected medical journals, prove that few diseases are more prevalent, simple to diagnose, and easy to treat than B12 deficiency—and few carry such a high, yet entirely preventable, risk of deadly disease or infirmity.
Above all, the message of this book is that the suffering caused by B12 deficiency, an “invisible” problem so pervasive that it touches the lives of nearly every family in America, is unnecessary. We can stop this cruel disorder in its tracks, before it destroys more lives. I dodged the bullet of B12 deficiency, and so can its other potential victims—but only if patients and doctors alike open their eyes to the scope of this hidden epidemic."
Thursday, May 03, 2007
A Silly Yak family affair
By Kaitlin Warriner, Associate Editor
Fourteen years ago 63-year-old Ray Remmich started showing what doctors like to call “the classic symptoms” of a malnutrition disease. He was rapidly losing weight, having unexplained bouts with diarrhea and migraines.
Ray was diagnosed with Celiac Disease (CD) – an autoimmune disease cause by a reaction to gluten found in all forms of wheat, barley, rye and possibly oats – in 1998, five years after his symptoms began and right after a hernia surgery that doctors think triggered the symptoms.
“If I had Celiac Disease as a child, it’s amazing that I’ve lived this long because at 7 years old, my brother and I started driving wheat harvesters. I was born on a wheat ranch in Montana,” said Ray.
Ray’s wife, Ann, wasn’t too concerned about Ray’s condition right away.
“He was in his early 50’s then and we thought it was part of getting older. These things happen. We weren’t really concerned,” said Ray’s wife Ann. “By 1996 he had lost enough weight that I was thinking it was a little odd, but that was the year our daughter got married and a lot of other things happened, so it kind of got shoved under the rug.”
“Every time he ate anything, he just felt horrible,” said Ray and Ann’s daughter, Amy.
“When you’re not absorbing your food, you’re losing all the nutrition,” said Ray.
“And interestingly, when Celiacs aren’t feeling well, and their stomach is kind of upset, they’re told to eat toast because it’s easy to digest,” said Amy causing Ray to laugh. “So he was trying to eat a bland diet that was just making it worse.”
In the fall of 1997, Ray was diagnosed with hypothyroidism and put on medication for it.
“I didn’t know at the time, but that condition means that if anything, you should be gaining weight. Ray was doing the opposite,” Ann said. “I’m not sure why the doctors weren’t wondering a little bit more what was going on.”
But Ann said Ray’s condition couldn’t be avoided for long.
“It got to the point when our family, who we don’t see a lot because they live in Montana, got concerned and asked if something was wrong with Ray,” Ann said. “By the summer of 1998 he looked terrible. He really looked bad. We went to a family reunion and everyone was concerned. He had no idea what was wrong. I thought it was cancer.”
Many doctors in the United States are trained to think CD is rare and mostly found in infants. The National Institution of Health has estimated that 1 in 133 Americans have CD and 97 percent of them are undiagnosed. Up until recently, the average time from onset to diagnosis was 11 years.
Most Celiacs are misdiagnosed and continue to eat wheat products without knowing why they’re feeling ill and without piecing their seemingly random aches and pains together.
According to Celiac Disease: A Hidden Epidemic by Peter Green, M.D. and Rory Jones, symptoms in Celiacs vary with each individual case and can sometimes be very subtle. Some of the more common symptoms include bloating, gas and/or stomach cramping, diarrhea or runny stools, constipation, joint pain, numbness or tingling in your extremities, itchy skin lesions, constant unexplained fatigue, and frequent headaches or migraines.
When Celiacs eat products containing traces of wheat, their immune system responds by damaging the small intestine. The small, hairy, fingerlike villi that line the small intestine are lost. Without villi, a person becomes malnourished – no matter how much food they eat. Eating gluten-free is a lifelong commitment -- there is no cure and people don’t outgrow it. Celiacs become more at risk for autoimmune diseases like lupus, thyroid problems, or diabetes. There’s a significant increased risk for Celiacs to contract certain types of cancers like Hodgkin’s lymphoma.
“In 1996, our daughter married a man from India, who grew up vegetarian, and we were all switching to a more vegetarian diet, which meant more grain, which of course we didn’t know wasn’t good for Ray,” Ann said.
By the summer of 1998, when the Remmichs returned from their family reunion, Ray had gotten worse. With a normal weight of 190 pounds, Ray had scaled down to a shocking 137 pounds.
Ann made a doctor appointment.
After a colonoscopy and endoscopy, Ray and Ann were told that Ray most likely had a problem with wheat, but that doctors wouldn’t know for sure until the results of the biopsy were in. Ann was told that in the meantime, Ray could resume a normal diet.
“I was so in shock that I didn’t have a presence of mind to say, ‘We don’t know what that is – look at the man you just did the procedure on’,” said Ann. “In the recovery room, Ray was given chicken noodle soup,” said Ann. “I realize that’s not a big thing for most people, but when you’re in the hospital for a possibly allergy to wheat, it seems a little strange.”
When Ray and Ann got home, they decided that a normal diet meant no wheat, so they began cutting out the obvious things like bread and pasta. The Remmichs were contacted later that week and Ray’s condition was confirmed. “Ray had the only symptoms that many doctors are aware of, if they are aware of them at all,” said Ann.
Ray remembers noticing an increase in appetite and energy after cutting wheat out of his diet. “ I don’t think I would have made it two more years,” he said.
Ann and Ray met with a nutritionist who told them about a support group in Madison (MAGIC: Madison Area Gluten Intolerance Chapter) that met on Saturday mornings. The Remmichs weren’t able to make the meetings, but the group got the Remmichs plugged in and connected as much as possible.
“It didn’t take long for us to get the information that wheat hides in lots of things. Forms of it are in most things that come in a container. Modified food starch is a derivative of wheat and almost everything has that, including flavored yogurt. (Dots' note: modified food starch from foods made in the USA is most likely made from corn starch (if otherwise, the manufacturer will state what it's made from in parenthesis after the word "starch" ... however, always call manufacturers re: items from other countries which have different label laws.)
“The good news is that the wheat-free diet is a healthy diet,” Ann said. “It forces you to not stop at McDonalds, eat Hamburger Helper or fast food.”
The Remmichs learned that eating fresh meat, fresh fruit and vegetables were good choices, while processed meats like hot dogs, hamburgers or lunchmeat were no-no’s. They learned to shop at Whole Foods, Willie Street Market and Copps because of their variety of gluten-free items for sale.
Ann said the new menu wasn’t hard to adapt to, because it made Ray feel so much better.
“He didn’t know how sick he really was for so long until he started to feel better,” Ann said.
Ray wasn’t the only one who was changing his diet. Ann got rid of all the flour in her kitchen when Ray was diagnosed.
“Anything Ray couldn’t eat, I got rid of,” said Ann who continued to buy regular bread for herself in the beginning.
“It got to where it was easier for me to become gluten-free also. Fortunately there’s only Ray and I in the house now,” said Ann. “For a large family, the change would be a lot harder.”
With the Remmich children, however, the kitchen change wouldn’t have proved too hard.
Ray and Ann’s daughter, Amy Bhatnagar, 39, now of Sunnyvale, Calif. was diagnosed with CD in May of 2004. Jason, 37, of Sun Prairie was diagnosed in March of 2005. Although some Celiacs can be born and diagnosed at birth, sometimes it takes a traumatic event to trigger the disease.
“Usually it’s a genetic thing working along side an environmental trigger,” said Amy. For Ray, it had been hernia surgery. For Amy, it was running.
Amy has been anemic her whole life and constantly felt the urge to nap in the afternoons. She occasionally had upset stomachs and was diagnosed with gastroenteritis (unexplained severe stomach pain) in grade school.
“Growing up I had a touchy stomach,” said Amy. “I always thought a stomachache every couple of days was a normal thing. I thought taking a nap every day was normal.”
“Once in a while, she, more than most children, would have diarrhea, but again you think it was something she ate, so it wasn’t really a concern,” said Ann.
After Ray was diagnosed, Ann was told immediate family members should be screened, because the disease is hereditary.
“But at that time, we thought that if you had Celiac Disease, you’d be losing weight,” said Ann. “At that time, Ray’s symptoms were the only list of symptoms.”
When Amy figured out that she had CD three years ago, she was training for a marathon. She was eating lots of carbohydrates and losing weight, but didn’t think anything of it because she was exercising so much.
“From the time Amy had gotten married in 1996, she and her husband wanted to start a family and she was unable to get pregnant,” said Ann. “She saw doctors and none of them could find a reason why she wasn’t pregnant. They tried fertility drugs, but they didn’t work, so they adopted.”
“Now I realize it was connected to CD,” said Amy. “There’s a little bit of regret that if we would have figured this out much earlier, maybe we wouldn’t have had to go through all those years, but then I wouldn’t have my two daughters.”
Amy went in for a doctor appointment to have a few routine blood tests done before the marathon and the doctor was shocked at her iron levels.
“She was so severely anemic,” said Ann. “She was eating a very good diet and wasn’t taking iron supplements or anything. As an adult she had no reason to think she was anemic until that appointment.”
After doing some personal online research, Amy found that both infertility and anemia were connected to CD.
“I was doing research myself online and typed anemia and infertility into Google and came to the Celiac web site. I thought that I’d just read the latest on what my dad has,” Amy said. “I started reading and felt stupid I hadn’t figured it out before. I have a Doctor of Pharmacy degree and used to work at UW Hospital. The fact that I couldn’t figure this out was so silly. I went to my doctor and asked for the blood test.”
“In hindsight we should have known,” said Ann. “We all should have known, but we didn’t.
“Amy called a few days later and said she had figured out her problem – she had Celiac Disease,” said Ann crying. “I’m not crying because it’s such a horrible disease, I’m crying because it took us so long to figure it out.
“As soon as she said it, everything came into place,” Ann said.
Amy’s run-in with CD was kicked into high gear with her marathon training and carb-loaded diet.
“We were surprised, but not shocked,” said Ann of hearing the results of Amy’s tests. “We pushed our son, Jason, to get a blood test. I kept asking him ever since Ray was diagnosed if he had been having intestinal problems. He said he never was.
“We don’t know how long CD was active in Jason,” said Ann. “He was a tough little baby and he ate everything. By the time he was 4, he started not being chubby and starting shooting up. He’s always been on the slim side, but then again, my whole family and most of Ray’s family members are slim, so there was no concern about Jason being underweight.”
“I kind of take after my mom’s side of the family. My mom is thin and her whole side of the family are thin people. I just thought I was a thin person,” said Jason. “The sicker you get, there’s a whole lot of denial. You don’t go from feeling like a normal person to feeling that bad in one day.”
Jason remembers not feeling “right” all the way back to 21 years old.
“When I was in my early 20’s I can remember visiting Amy in Arizona,” said Jason. “We were driving down the road and I remember asking her if she ever had days filled with brain fog.”
Throughout his 20’s, Jason would have good days where he’d feel clear-headed and full of energy followed by bad days.
“You kind of just think that’s normal,” said Amy. “You feel like this is how everybody feels.”
“But as time went on, there were more bad days than good days,” Jason said, reciting the abdominal and joint pain that followed.
“The abdominal pain felt like I had shaved glass in my guts. The joint pain felt like arthritis in my shoulders, elbows, hips and knees,” said Jason.
He described brain fog like a bad hangover that lasts an entire day.
“You know that feeling when it feels like you’re just not quite mentally all there. That’s pretty close to brain fog. There’s chronic fatigue and itchy skin when you get more into it too.”
A positive blood test showed that Jason was also anemic.
“He called Ray’s clinic to have his ears checked and asked for a blood test to test him for Celiac Disease,” said Ann.
According to Jason, the doctor was very reluctant to give him the requested blood test.
“There’s really no sense in us giving you this test, because even if you have Celiac Disease, there’s nothing we can do about it,” Jason remembered the doctor telling him. Jason refused to let the practitioner off the hook that easily.
“I said, ‘To tell you the truth, I’m not really asking you to do anything for me. I just want to know if I have it so I can make the necessary lifestyle changes.’” Jason said.
Jason’s blood test came back with more alarming numbers than Amy’s tests. Jason immediately
went as gluten-free as possible and has since been relieved of his joint pain and brain fog.
“Normally, brain fog is not listed as a symptom in many places, but a lot of people in Celiac forums mention it,” said Ann. “It’s like you’re not able to think clearly all the time. You don’t pick up on things right away. You’re living life through this veil. That was the biggest thing for Jason.”
Both Jason and Amy had adapted to the new lifestyle, just like their dad has – spending more time in grocery stores reading product labels and hand-picking “safe” restaurants to dine at.
“I miss eating out and being able to just go wherever I want to,” said Amy who has started running again. “My husband and I love all kinds of different foods from around the world and we used to love going to different restaurants. I just miss being able to get into the car and go somewhere to eat. There are very few places I trust anymore.”
One of the few “safe” places for the Remmichs is Bunky’s Café, an Italian-Mediterranean restaurant on Atwood Avenue in Madison owned by Teresa and Rachid Ouabel. The café offers a variety of gluten-free options including pizza crust, spaghetti and ravioli.
“We feel normal and at home here because we know it’s safe,” said Ann. “They are knowledgeable enough to know not to use the same utensils to cook gluten and gluten-free items.”
The Remmichs also patronize the Silly Yak Bakery on the west side of Madison. The store regularly closes down to be cleaned so that a massive gluten-free baking session can be conducted. Culvers, PF Chang’s on Madison’s west side and most Food Fight restaurants cater to Celiacs and offer gluten-free menu items that can be trusted, the family said.
Ann said she and her family want to see Celiac awareness raised so families are running around in circles for years trying to wrongly diagnose “random” symptoms.
“Obviously, you can see why people and doctors should be more aware of it -- people can have it and not know it. All these individual symptoms are difficult to connect. Migraine headaches are a fairly common thing,” said Ann. “You can see how this can go on and on. Nobody is putting all these things together. So what do you do? Where do you go? For those who are experiencing random pain, what can they do?”
Ann and Ray want to extend help and spread knowledge to new and old Celiacs alike. Ann wants to start a Sun Prairie Celiac support group.
“I know that they’re out there,” said Ann of local Celiacs. “But they may not know they have it. But for those that already know, I know there’s a demand. I think it (celiac support group) would be a really good thing to have.” Ann encouraged those who may think they have CD or for those who already know they do to contact her via phone or e-mail.
Ann also encouraged those who “have an inkling that this might be a problem for them” to do their own research and go to their doctor and get tested. Ann hopes her family’s story will inspire people not to dismiss seemingly disconnected symptoms.
“All three were so different -- you don’t have to be wasting away like Ray was. Don’t let your doctor get away with not offering the blood test. How bad do you really want to know? Denial is not an option,” Ann said.
“The baffling part of this disease is that, say you eat peanuts and your throat swells up or you eat shrimp and your throat swells up, or you get hives … You don’t eat peanuts or shrimp three times a day, every day of your life,” said Jason. “Wheat is so saturated in our diet. That’s the problem. You never make this association without being tested because you’re eating it all the time. As a food allergy, which it’s really not, it’s more of a food intolerance – you can’t say to yourself, ‘I don’t have this because every time I eat wheat I don’t get sick.’ You’re sick all the time because you are eating wheat all the time and you get used to it.”
“The medical field is getting better with understanding the disease, but they have a long way to go,” said Amy. “You have to be your own advocate. It’s a complicated disease, it really is. Because the symptoms are more subtle and varied, it makes it difficult to describe the disease. It is a serious disease -- if I eat a little bit of wheat, I could get cancer down the road or I could get some other serious auto-immune disease and then I wouldn’t be able to take care of my children.”
“If people are at a dead end of being diagnosed, they should consider something like this,” said Ray.
To get more information about a local support group, e-mail the Remmichs at email@example.com or call them at 837-8996.
Monday, April 30, 2007
Written by Shelley Case, nutritionist (who also has a book: Gluten Free Diet: A Comprehensive Resource Guide), and also Jenny Heap and Nixie Raymond.
Please please do not embark on a gluten free diet without talking with your doctor and getting appropriate blood labs & other testing (stool tests via enterolab.com) or possibly an intestinal biopsy to confirm your status. Doing so may destroy your antibody counts for those tests to be accurate.
Thursday, April 26, 2007
From MSN today: Rare Lung Disease Found in Food-Flavoring Workers
(it seems being "allergic" to so many things is like being a canary in the coal mine! You always hear how going gluten-free is healthier "anyway" - I only hope this spurs change in our food supply and culture!
Lead contamination also high among women workers in battery plants, CDC report finds
By Steven Reinberg, HealthDay Reporter
THURSDAY, April 26 (HealthDay News) -- Eight cases of a rare and life-threatening form of lung disease have been discovered among those who worked in food flavoring plants in California between 2004 and 2007, a new study finds.
In addition, levels of lead are elevated among women who work in plants that make batteries, according to a second report in this week's issue of Morbidity and Mortality Weekly Report, a publication of the U.S. Centers for Disease Control and Prevention.
Among food flavoring plant workers, a severe lung disease known as bronchiolitis obliterans appears to result from inhaling the chemical diacetyl, which has been known to cause the same problem among workers in the microwave popcorn industry.
"Bronchiolitis obliterans is a severe lung disease that can be prevented with appropriate measures, such as engineering controls, work practices, medical surveillance, and a respiratory protection program," said report co-author Dr. Rachael Bailey, an epidemic intelligence service officer at the CDC's National Institute for Occupational Safety and Health.
Diacetyl, which is used in butter flavoring, appears to be the culprit, Bailey said. "But there are literally thousands of chemicals that are used in making these flavorings and not all of them have been evaluated, so other chemicals may cause the disease as well," she noted.
Bronchiolitis obliterans is a rare disease, said Dr. Richard Kanwal, a medical officer in CDC's National Institute for Occupational Safety and Health. "You don't expect to find this disease in the average worker," he said. "When we find this in a small workforce we get very concerned," he said. "One case is very rare, but when you find more than one in a workforce of 10 or 20 people, it is very striking."
Kanwal noted that there are no regulations that govern food flavoring plants. In addition, there are no regulations that govern the chemicals used in these plants. The CDC has asked manufactures of food flavorings to take steps to create safer environments, including ventilation and respiratory protection for workers in these plants.
Bailey noted that an otherwise healthy flavoring worker who develops a cough or shortness of breath needs to be evaluated to see if the condition is work-related. "That person should be evaluated for bronchiolitis obliterans," she said.
One expert agreed that more must be done to protect workers.
"Occupational lung disease is a hazard in many industries, from mining to farming to automotive work," said Dr. David Katz, director of the Prevention Research Center at Yale University School of Medicine. "These case reports suggest the need to add the food flavoring industry to the list, and to establish and enforce suitable safeguards so that workers are protected."
But the illnesses hint at something else of far greater importance to the public at large, Katz said. "If the chemicals used in the flavoring industry are this potentially dangerous to the workers handling them, how good an idea can it be for the rest of us to be eating them? Personally, I think artificial flavors should neither be inhaled, nor ingested," he said.
Another report focused on lead levels among women of childbearing age. The CDC researchers found that while lead levels for most of the 10,527 women tested in 10 states were low, there were elevated levels among some working women, particularly those engaged in battery manufacturing.
Women in that industry had 244 cases of blood lead levels above 25 milligrams per deciliter per every 100,000 women employed. That compares with 7.1 such cases per 100,000 women in manufacturing jobs, and 0.6 cases per 100,000 women working in all types of jobs.
In addition, the industry that includes battery manufacturing had a rate of 8.4 cases of blood lead levels above 40 milligrams per deciliter per 100,000 women employed in that industry, compared with rates of 0.4 per 100,000 employed in all of manufacturing and 0.04 per 100,000 employed in any job, according to the report.
"These higher rates suggest that despite the U.S. Occupational Safety and Health Administration's recent focus on reducing workplace lead exposures among all U.S. workers, the workplace remains a substantial source of exposure, and clinicians should consider work history when determining whether to measure blood lead levels," according to an editorial comment.
"The difference between blood lead levels that are considered elevated in females who are pregnant and those who might become pregnant has substantial public health implications," the editorial notes. "Identifying and counseling females of childbearing age who might become pregnant and expose children to lead in utero might help to prevent neurobehavioral and cognitive deficits."
Lead is a known neurotoxin, uniquely dangerous to the developing brain, Katz said. "Exposure during pregnancy is of special concern. The finding that work in the battery manufacturing industry appears to place women at increased risk of elevated blood level levels sounds an alarm," he said.
"Minimally, it means that women of childbearing age must be informed of this danger before hire. In many cases, however, a dangerous job may be more attractive than no job at all, so leaving avoidance of this threat to the individual woman is rather unfair. Ideally, working conditions will be altered to eliminate this threat at the source," he said.
A third article notes that, in 2004, the number and rate of nonfatal occupational injuries/illnesses across America remained similar to those in 1996, 1998, and 2003. In 2004, there were 3.4 million nonfatal industrial accidents or illnesses.
"The rate of workers treated in an emergency department for nonfatal occupational injuries/illnesses has not declined substantially in the United States in recent years. Younger workers aged less than 25 years continued to experience the highest rates of injuries/illnesses," the report concludes.
For more information on disease from food flavoring, visit the U.S. Centers for Disease Control and Prevention.
SOURCES: Richard Kanwal, M.D., M.P.H., medical officer, and Rachael Bailey, D.O., epidemic intelligence service officer; both of the U.S. Centers for Disease Control and Prevention National Institute for Occupational Safety and Health; David L. Katz, M.D., M.P.H., director, Prevention Research Center Yale University School of Medicine, New Haven, Conn.; April 27, 2007, Morbidity and Mortality Weekly Report
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Friday, April 20, 2007
A helpful site for figuring out what pet food would be good at this point in the pet food recall issue. (Now rice is contaminated with melamine also. So this info is a bit dated - just adjust to include no rice, and/or visit the pet food manufacturer's website.)
Here's a podcast of an interview with a celiac vet who has studied nutrition/allergies since his own celiac diagnosis 7 years ago.
Here're his recommended dog foods:
And this list of pet food is from a celiac.com article:
IVD/Royal Canin - L.I.D.s (potato-based diets)
Nutro Natural Choice Lamb and Rice
Canidae and Felidae- Dog and cat foods
Dick Van Patten Natural Balance Duck and Potato, Venison and Brown Rice, and Sweet Potato and Fish Formulas
Solid Gold Barking at the Moon
Natura California Naturals
Canine Caviar Lamb & Pearl Millet and Chicken & Pearl Millet formulas
Eagle Pack Holistic Select®Duck Meal & Oatmeal and Lamb Meal & Rice \ Formulas
Eukanuba Response KO and FP
Your Whole Pet - Bigger than you think: The story behind the pet food recall (http://www.sfgate.com/cgi-bin/article.cgi
Coppinger, Ray and Lorna, Dogs: A Startling New Understanding of Canine Origin, Behavior & Evolution, Scribner, 2001. 59 -- 78.
Case: Cary, and Hirakawa, Canine and Feline Nutrition, Mosby, 1995. 93.
Morris, Mark, Lewis, Lone and Hand, Michael, Small Animal Clinical Nutrition III, Mark Morris Associates, 1990. 1-11.
Burger, I., Ed. The Waltham Book of Companion Animal Nutrition, Pergamon 1995. 26-27: 10.
Symes, D.M.V., Dr. John B. ("Dogtor J") www.dogtorj.net
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