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Celiac.com 09/03/2020 - Reading Ron Hogan’s article on ‘A Changing Paradigm’ touched my heart and fueled once again, my frustration with the state of our Health Care System. It’s not that the doctors in Ron’s article didn’t think of celiac disease that makes it so distressing; it’s the arrogant disdain for what might have been a rational, logical, scientific cause of unnecessary suffering, the rigidity about turf that is frustrating. Where is the Community when needed? Learning to care for each other as a Community where the welfare of each individual is a priority for everyone is one of the hallmarks of an advanced society. One can argue whether our current society is an advanced society. We certainly have the hallmarks of being ‘advanced’. We spend more in the US on health care than any other country in the world. And yet, according to Barbara Starfield, MD, PhD., of Johns Hopkins, in an article entitled “Is US Health Care Really The Best in The World?” published in the Journal of the American Medical Association, “of 13 countries in a recent comparison, the US ranks an average of 12th (second from the bottom) for 16 available health indicators.” Countries in order of their average ranking on the health indicators (with the first being the best) are: Japan, Sweden, Canada, France, Australia, Spain , Finland, The Netherlands, The United Kingdom, Denmark, Belgium, The United States, and Germany. US estimates of the combined effect of errors and iatrogenic damage not associated with recognizable error include: 12,000 deaths/year from unnecessary surgery 7,000 deaths/year from medication errors in hospitals 20,000 deaths/year from other errors in hospitals 80,000 deaths/year from nosocomial (in hospital) infections 106,000 deaths/year from non-error adverse effects of medications “These total to 225,000 deaths per year from iatrogenic causes. Three caveats should be noted. First most of the data are derived from studies on hospitalized patients. Second, these estimates are for deaths only and do not include adverse effects that are associated with disability or discomfort. Third, the estimates for deaths due to error are lower than in the World Health Report.” (1) And Dr. Joe Mercola, summarized this data with the caption “Doctors are the Third Leading Cause of Death in This Country Behind Heart Disease and Cancer”. (2) So I believe most would agree with me that we could have long and possibly heated discussions about how ‘Advanced’ a society we have if we use Health Care results as a marker of being ‘Advanced’. But one group that demonstrates being an “Advanced Society” is active, elder widows. These gals call each other regularly, check in and make sure that all are OK. Movie outings, rides to the Dr.’s office and church socials. They recognize the value of caring for each other and allowing themselves to be cared for. It’s community. Life expectancies increase, and perhaps more importantly, quality of life increases. We all know the more activity one has, the more the elderly “get out”, the better they feel about themselves and those around them. So here’s a Case History for you. “The Gals” came to pick up Nellie, an 80-year old widow and member of the Tuesday-night-Bingo group. They beeped the horn-she didn’t come out. They rang the doorbell-no answer. They saw that her car was in the garage so they called the police. When the police arrived and did a forced entry, they found Nellie incoherent and slurring her words (sounds like a stroke to me). An ambulance rushed her to the ER. Standard protocols were begun to minimize the damage from the apparent stoke. By the time I traveled the 6 hours to get to her and reached the hospital, I found my Mother admitted, in a hospital bed, slurring her words and not recognizing me. She was hallucinating-seeing people walking in the walls, and a burning bush. THIS DID NOT LOOK GOOD. The Dr. comes in and explains to me that there is no evidence of any brain damage. As a matter of fact there is no evidence of a stroke. MRI’s and CT’s negative for any evidence of a problem, or that she had had a stroke. As a matter of fact, he tells me that my Mother has Toxic Metabolic Encephalopathy (a good Scrabble term that means toxicity causing the brain to not function properly) and that her brain “has just gone”. We’ll have to commit her to an assisted living facility, she’ll never be the same, and we just want to make her comfortable for her remaining time. As a matter of fact, his Mother is going through the same thing and “we just have to make them comfortable”. Well obviously I was in shock, seeing my Mother in that bed, helpless and dysfunctional. Tears came into my eyes. WAIT A MINUTE. My Mother was fine two days ago when she called me. Upset and as vocal as any good Italian widow would be that her son had not called in a few days (Mea Culpa), and now you’re telling me she is doomed to a non-functional hallucinatory state for the short time she has left. And there’s no evidence of damage anywhere that would cause this? I don’t think so. Am I a Functional Medicine Practitioner or not! We checked my Mother out of the hospital, put her in a car and drove her to Chicago. Finally, I was able to run the tests on her that I’ve wanted to run for years (“Mom, I need to do a blood test on you to check you for allergies”. Oh Tom, I don’t have allergies. If I did Dr. X would have told me and checked it. He’s such a nice Dr…..”). Many of you have heard this type of story from your loved ones. After all, their “good Dr. X “is such a nice man, he would certainly have tested me if it was necessary.” You would think Marcus Welby is still with us! Well now I could run my tests. Not only was she malnourished and dehydrated, her Gliadin and Transglutaminase antibodies were elevated (hallmarks of gluten allergies initiating an auto-immune reaction). And she was positive for the HLA-DQ2 gene (genetic marker of celiac disease). My Diagnosis? Toxic Metabolic Encephalopathy secondary to Malnourishment, Dehydration and Anemia complicated by Gluten Intolerance and likely celiac disease. My Recommendation? A Modified Mediterranean Diet, 5 meals per day (eliminating gluten, dairy, sugar and caffeine) with a ‘Medical Food’ protein drink mid-morning and mid-afternoon, a few brain nutrients, 3 grams of Omega 3’s, and 5 glasses of filtered water per day. Nothing too sophisticated. Not rocket-science technology here. Just the basics to start with. My Prognosis? Let’s pray it helps. Her results? Full Cognitive Recovery in 3 weeks! Weakened from the entire ordeal (any 30 year old would be, let alone an 80 year old). Within 8 weeks she went back to her “good Dr. X” and received his “startled” OK to drive again. How many years had her gluten sensitivity been taxing her brain with no gut symptoms producing such a vulnerable state just waiting for the straw that broke the camel’s back? How many hundreds of thousands of neurons, axons, cerebellar fibers, have been destroyed by the continual onslaught of a food allergen that demanded an immune system response (inflammation and eventual tissue destruction)? How many years of borderline malnourishment? How much suffering? How many people have to die unnecessarily? How many seniors receive a doom diagnosis unnecessarily? When will we start “looking with eyes that see” and “listening with ears that hear?” When will our doctors think “gluten” as a possibility to be checked when signs and symptoms don’t add up? (3) Why do we have such a poor-performing Health Care System? No one has ever looked at this in totality. But Dr. Starfield summarizes it well when she said “The perception is that the American public ‘behaves badly’ by smoking, drinking, and perpetrating violence. The data shows otherwise…although tobacco use and alcohol use in excess are clearly harmful to health, they do not account for the relatively poor position of the United States on these health indicators...common explanations for this poor performance fail to implicate the health system” Sometimes the most “advanced overview” does not require rocket-science technology. As my mentor, Dr. George Goodheart would say ”the body is simply intricate and intricately simple” As you read the informative articles in this publication, if you suspect you or your loved ones of having a sensitivity, by spending the dollars testing them (whether insurance approves or not) you may prevent a diagnosis of “We’ll have to commit her to an assisted living facility, she’ll never be the same, and we just want to make her comfortable for her remaining time.” Starfield, Barbara, Is US Health Care Really the Best in the World, JAMA July 26,2000, Vol.284,483-485. Mercola, J. Townsend Letter For Doctors & Patients, October 2000. Lurie, Y Celiac Disease Diagnosed in Elderly, J Clin Gastroenterol Vol. 42, No. 1, Jan. 2008
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Celiac.com 09/02/2020 - In a recent blog post, the Toronto law firm, Himelfarb Proszanski LLP, noted that people with any of a number of long-term disabilities are routinely denied coverage for their conditions by medical insurance. Chronic mental and psychological disorders, which lack clear visible evidence, are the most commonly denied conditions. These include mental and psychological conditions such as depression, bipolar disorder, paranoid schizophrenia, chronic anxiety and sleep disorders. Generally speaking, the post notes, physical disabilities, like serious back and spinal problems, paralysis, or blindness, are easier to spot and see fewer denials. However, the list of physical conditions that see frequent insurance denials of coverage includes celiac disease, fibromyalgia and chronic arthritis, among others. The post notes that such conditions are often hard to diagnose, and sometimes difficult to prove in court. To qualify for long-term disability insurance benefits, the post says, people with serious depression, bipolar disorder and schizophrenia often need diagnoses from more than two physicians. People denied coverage for these hard-to-diagnose long-term disability conditions face can face an uphill legal battle. “Many insurance and legal experts say the situation is equivalent to discrimination against people who suffer from mental illness or ‘invisible’ disease or ailment,” the firm noted. Even people who have qualified, and are currently receiving benefits are subject to review and sudden denial, said the firm's post. Have you or a loved one faced an uphill insurance battle because of celiac disease or any of the conditions listed above? Be sure to share your story in the comments section below. Read more at the LATimes.com
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ABCs 20/20 - August 6, 1999 (Friday night). One of the presentations was "A Good Doctor," which covered celiac disease. July 29, 1999 - The London Times: A UK research team at Guys & St Thomas in London have won German Institute of Technology international competition (DM12 million) for research projects "based on genetic structure of grains of cereal and designed to develop variants of wheat, rye and barley that are non toxic to people with coeliac disease." July 28, 1999 - There was a stor about celiac disease on the NYC WNBC TV evening news. U.S. News & World Report - July 26, 1999 issue had an article titled, "The curse of Frankenfood," which discussed food allergies and celiac disease. 7/21/99 - Channel 7 in Chicago (an ABC affiliate) aired a 2 ½ minute segment on celiac disease and the magazine Sullys Living Without during the 10pm news. Awake! Magazine, March 22, 1999 - Coping with Celiac Disease. The Diabetic Advisor, March/April 1998, p. 18-19, "The Mysterious Celiac Sprue," by the American Diabetic Association. Psychology Today, April 1998, p. 20, "Q&A" section on gluten intolerance. Vegetarian Times, February 1998, p. 36-37, "Cant Eat Wheat?" by Mary Carroll. Allure Magazine, February 1998, p. 80, "Gluten for Punishment." Belfast News Letter, January 31, 1998, "Diet Disorder Difficult to Diagnose." San Jose Mercury News, January 24, 1998, "The Communion Ailment," by Judith Neuman Beck. Calgary Herald, January 2, 1998, "Cancer Theory Sparks Controversy," by Daryl Slade. An interview with Ron Hoggan. Newsweek, 11/17/97, p. 95. The article is about Leaky Gut/ intestinal permeability. It also mentions a possible link to chronic-fatigue syndrome. Toronto Star, 06/23/97, "Hormone Holds Hope for Repairing Intestine," by Leslie Papp. Ithaca Journal, 04/12/97, "Sweets for the Statesmen, subtitle Desserts, White House Style," by Lawrence L. Knutson. "With (President) Clinton, Mesnier [His desert chef] faces a special challenge...hes on a special diet because he has allergies - no dairy products, no chocolate, no wheat." Independent newspaper (UK), 2/8/96, LONDON: This is a short article reporting research into ME (myalgic encephalomyelitis) by doctors at the Royal Hallamshire Hospital in Sheffield. Their research was published in the same weeks Lancet. Their study found that Gluten may play role in nerve disease. Boston Globe, 10/19/95, p.3, title: "Jet Lag Tale Works Some of the Time". This is a 600 word article including a small notice of the recent findings about oats. Reuters; Philippe Naughton; 10/18/95: "Oats are fine for people with celiac disease." Star Ledger, 8/28/95, "Gluten-Free Diet Works Wonders for Person with Celiac Sprue." Another of Dr. Donohues columns. This on is a short commentary on the varying length of time is takes to heal after beginning gluten-free diet. The Oregonian (newspaper), July 25, 1995, "When Food Bites Back," by Barbard Durbin. Baltimore Sun, 7/11/95, p. 1D, title: "A Healthy and Happy Girl Suddenly Became Sick..." This is a long article (1900 words) about one familys experience with their daughters diagnosis, and how they have coped with it. Gannett News Service; Hollie Weaver Beason; 5/2/95: "Nutrition: Food Allergies" Virginian-Pilot and Ledger-Star (Norfolk, VA), 4/6/95, p.F1, title: "When Food is the Enemy; Sensitivity to Certain Foods ..." Long article (2700 words) on food allergies, food sensitivities; including two paragraphs on celiac disease. Jerusalem Post; Judy Siegel-Itzkovich; 4/02/95: "No free lunch for children who need special diet." Jerusalem Post; Itim; 2/19/95: "Products containing gluten to be marked" Gannett News Service; Mindy Mozer;10/18/94: "Celiac Disease Hard to Diagnose." Star Ledger (Newark, NJ), 5/6/94, title: "Sprue Patients Grain Intolerance Requires a Lifelong Restricted Diet." Dr. Dononues write-in column is a short piece about the lifelong nature of the celiac diet. Telegram & Gazette (Worcester, MA), 3/28/94, p. C1, title: "Its All Relative; Skeletons in Family Medical History Can Affect Your Health." Thoughts on the family tree & how to track genetic inclinations. Harvard Health Letter; Goldfinger, S.E.; 2/1/92: "A cereal mystery" Harvard Health Letter; Hoffmann, S.; 5/1/91: "Gluten for punishment."
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