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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    IS GLUTEN SENSITIVITY A NEUROLOGICAL DISEASE?


    Jefferson Adams

    Celiac.com 08/13/2009 - In the latest issue of the journal Medical Hypotheses, Dr. Rodney Philip Kinvig Ford of the Children’s Gastroenterology and Allergy Clinic in Christchurch, New Zealand, offers up a compelling hypothesis regarding celiac disease and gluten sensitivity, which asserts that the broad array of associated symptoms are more fully explained using a neurological perspective, than using a digestive/nutritional perspective.


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    For Dr. Ford, the idea that celiac disease is exclusively an auto-immune condition, and that nutritional mal-absorption is the main cause of related problems, is simply not borne out by the body of clinical data.

    Dr. Ford accepts that celiac disease may itself be largely an auto-immune disorder. However, he believes that the broad array of problems associated with gluten intolerance are best explained by looking at the neurological aspects of intolerance to gluten, indeed, treating it as a neurological condition.

    That's because gluten intolerance can affect up to up to 10% of the population, and that intolerance to gluten has largely neurological manifestations. That is, up to 10% of the population tests positive for elevated antibodies for gluten, even with no bowel damage.

    Under Dr. Ford's hypothesis, neurological causes, rather than gut damage and nutritional deficiency, best explain
    the myriad symptoms experienced by sufferers of celiac disease and gluten-sensitivity.

    Under Dr. Ford hypothesis, if gluten is the assumed cause of harm, then exposure to gluten in sensitive individuals may cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity.

    It's certainly true that a number of celiac patients experience neurological symptoms, often associated with autonomic nervous system malfunction.

    Such neurological symptoms can even show up in celiac patients who are otherwise well nourished. Moreover, gluten-sensitivity can be associated with neurological symptoms in patients who have no mucosal gut damage--that is, patients who are clinically free of celiac disease.

    Dr. Ford argues that gluten exposure can cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dis-regulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. He calls such neurologically-driven sensitivity to gluten ‘‘The Gluten Syndrome."

    Hypothesis: Gluten causes symptoms, in both celiac disease and non-celiac gluten-sensitivity, by its adverse actions on the nervous system.

    Many celiac patients experience neurological symptoms, frequently associated with malfunction of the autonomic nervous system. These neurological symptoms can present in celiac patients who are well nourished. The crucial point, however, is that gluten-sensitivity can also be associated with neurological symptoms in patients who do not have any mucosal gut damage (that is, without celiac disease).

    Gluten can cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dis-regulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache.
    If gluten is the putative harmful agent, then there is no requirement to invoke gut damage and nutritional deficiency to explain the myriad symptoms experienced by sufferers of celiac disease and
    gluten-sensitivity. This he calls: ‘‘The Gluten Syndrome."

    To support his hypothesis, Dr. Ford cites a study of 921 children carried out at his gastroenterology and allergy clinic. All children were screened for celiac disease via IgG-gliadinantibody (InovaDiagnostics) and tissue trans-glutaminase (tTG); and 190 had a small bowel biopsy. Results showed 724 with high IgG-gliadin levels (>14 units): mean age 5.3 years, s.d. 3.8.

    In a key part of the, all children, whatever the biopsy results, were offered a gluten-free diet.

    Results fell into three distinct categories:
    (a) Deï¬nite celiac disease was revealed in 31 patients (4.3%), via histologic diagnosis. 94% of these patients reported improvement on a gluten-free diet.

    (B) Possible celiac was revealed in 48 patients (6.6%), who had elevated tTG antibodies, but normal gut histology: 75% of these patients reported improvement on a gluten-free diet.

    © Not-celiacs, n=644 (89.1%), with normal tTG antibodies and no evidence of gut damage: 53% reported improvement gluten-free.

    Note that last category: More than half of people without celiac disease reported improvement on a gluten-free diet. What's up with that? Well, those are the people Dr. Ford suspects suffer from "gluten syndrome."

    The parents of apparently ‘‘asymptomatic” children were interviewed as part of a population study to identify those with celiac disease. They found many children who had positive tests for gliadin antibodies also had irritability, lethargy, abdominal distension, gas, and poor weight gains.  A high proportion of children with gastro-intestinal, allergy, and neurological conditions have elevated IgG-gliadin antibodies.

    The three groups all shared similar clinical features. In the respective groups, 71%, 65%, and 51% of patients reported behavior issues, such as tiredness, lethargy, irritability, sleep disturbance, while 16%, 15%, and 24% reported gastric reflux. Dr. Ford believes these symptoms are likely to be neurologically driven by gluten-sensitivity.

    Celiac patients completed a questionnaire regarding the presence of neurological symptoms. Those reporting any neurological manifestations were compared with a control group: celiac patients had more neurological disorders (51.4%) in comparison with controls (19.9%). These conditions included: hypotonia, developmental delay, learning disorders, attention deï¬cit hyperactivity disorder, migraine, headache, and cerebella ataxia.

    For Dr. Ford, not only is it significant that such high numbers of people with celiac disease report neurological issues, but it is also significant that the majority of 'non-celiac' patients report improvement on a gluten-free diet.

    These patients are likely candidates for what he calls 'gluten syndrome.' These children can likely be spotted via screening for high IgG-gliadin levels.

    Dr. Ford believes the next step is to test this hypothesis in a double-blind study.

    Certainly, the idea that a whole category of non-celiac gluten-sensitivity exists is intriguing, as is the idea that a neurological take on celiac-disease and gluten-sensitivty might might provide a better or improved understanding of those who suffer from these conditions.

    Medical Hypotheses 73 (2009) 438–440


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    Guest Glenn Ribotsky

    Posted

    This is news?

     

    While any increased dissemination of the idea that gluten sensitivity can have primarily neurological manifestations is welcome, the idea is hardly new or revolutionary, if one is familiar with the work of Drs. Hadjivassiliou, Chin, Latov, Fasano, and numerous others who can be looked up in Pub Med or google Scholar.

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    Guest Stephen

    Posted

    High IgG Values point to a Delayed Gluten Allergy.

     

    I wonder if these same Individuals had High IgE Levels to Gluten.

     

    I wonder what the Total IgE "Allergy Status" is in theses individuals > my hunch is that it is high for Enviro also.

     

    A High IgG / Delayed Presence will initially translate to Neutro manifest and Gut Damage later .. if not at all.

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    This is news?

     

    While any increased dissemination of the idea that gluten sensitivity can have primarily neurological manifestations is welcome, the idea is hardly new or revolutionary, if one is familiar with the work of Drs. Hadjivassiliou, Chin, Latov, Fasano, and numerous others who can be looked up in Pub Med or google Scholar.

    Why so angry Glenn? Additional perspectives are good, and the more articles about this the better...right?

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    This is news?

     

    While any increased dissemination of the idea that gluten sensitivity can have primarily neurological manifestations is welcome, the idea is hardly new or revolutionary, if one is familiar with the work of Drs. Hadjivassiliou, Chin, Latov, Fasano, and numerous others who can be looked up in Pub Med or google Scholar.

    Why so angry Glenn? Additional perspectives are good, and the more articles about this the better...right?

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    Guest Brent Bielema

    Posted

    Vaccines can also cause neurological disease -- so could this be behind some of the celiac cases? I also read a recent article by Jeffrey Smith about GMO foods, which said that they may cause allergies to non-GMO foods. It's amazing the human body can still function under all these onslaughts!

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    Guest Michelle

    Posted

    I have celiac and have been on a gluten free diet for more than five years. I have been going to Physical Therapy for over a year now for problems with my muscles and nerve pain. The doctor's don't know what's wrong. Interesting to think it may have to do with my celiac.

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    I have celiac and have been on a gluten free diet for more than five years. I have been going to Physical Therapy for over a year now for problems with my muscles and nerve pain. The doctor's don't know what's wrong. Interesting to think it may have to do with my celiac.

    I have had many of the same problems you're describing. I also have severe migraines. It would be interesting to know if the celiac has caused this damage or not. Only been on the diet for a year. I also have a son with autism who has seen some improvement in behavior on this diet.

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    Guest Jeff Adams

    Posted

    I have celiac and have been on a gluten free diet for more than five years. I have been going to Physical Therapy for over a year now for problems with my muscles and nerve pain. The doctor's don't know what's wrong. Interesting to think it may have to do with my celiac.

    Check out the very latest article with a part about gluten-free diets not seeming to help many of the common neurological problems associated with celiac disease...

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    Guest Mike Pilkington

    Posted

    You all make it so complicated. We all know:

    What you eat controls your digestion

    What you eat controls your energy

    What you eat controls your heart rate...

    AND I AM LIVING PROOF

    What I eat prevents my Atrial Fibrillation (chronic heart seizures)

    What I eat stops my neuropathy pain.

     

    HOW MUCH SIMPLER CAN IT GET THAN THAT?

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    Guest Mike Pilkington

    Posted

    Jeff Adams,

     

    The gluten-free diet is not helping the neurological because the poor absorption problem (gluten disease issue) still exists.

     

    If they were to eat gluten again, both the neurological and digestive will escalate. If they not eat gluten, I would not expect improvement because the digestive disorders still exist simply because they cannot eat gluten.

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    Guest Susan Mayans

    Posted

    I have been gluten free for 28 years and 2 years ago, I developed ataxia. I have all over neuropathies and atrial fibrillation. I am very strict about being gluten-free and it didn't prevent or alleviate my symptoms.

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    admin

    Nerve Disease and Celiac Disease
    Celiac.com 02/08/1996 - The article was based on a study published in the same weeks Lancet which was conducted by Dr. Marios Hadjivassiliou and colleagues at the Royal Hallamshire Hospital in Sheffield, England. Dr. Hadjivassiliou tested patients with various undiagnosed neurological symptoms and found that 57% of them tested positive to gluten sensitivity. Specifically, they tested positive for gliadin antibodies, which means they have gluten sensitivity and not necessarily celiac disease. Sixteen percent of the patients were found to have full blown celiac disease, which is far higher than the estimated .004% level found in the normal population. Five percent of the patients with previously diagnosed neurological disorders such as Parkinsons disease were found to have the gliadin antibodies present compared to 12% of a healthy control group.
    According Dr. Hadjivassilious theory, many neurological ailments could be caused when the anti-gliadin antibodies mistakenly attack neural tissue and destroy it. The fact that some celiac patients with neural damage never fully heal helps to support Dr. Hadjivassilious theory, because neural tissue repairs itself very slowly, if at all. Further, Dr. Hadjivassiliou states in the article that celiac disease seems to be much more common than was previously thought (1 in 250 people). When one includes the people who test positive for the gliadin antibody (this means they have gluten-sensitivity and are not necessarily celiacs), the amount could be much higher than 1 in 250. Based on his study, Dr. Hadjivassiliou recommends that patients who exhibit any type of neural disorders be tested for gluten sensitivity and celiac disease.

    Jefferson Adams
    Celiac.com 02/09/2009 - Doctors are recommending simple, low-cost blood tests to screen for celiac disease in patients who have Restless Leg Syndrome (RLS) with low serum ferritin, but who otherwise show no clear cause for iron deficiency.
    Low iron reserves are a known risk factor Restless Leg Syndrome, as blood iron levels below 45-50ng/mL have been tied to more severe expressions of RLS. In fact, iron levels are so important to assessing RLS, that it is now common for doctors to test blood ferritin levels when first assessing Restless Leg Syndrome. Celiac disease is a common genetic disorder of the immune system that can cause iron deficiency.
    Doctors S. Manchanda, C.R. Davies, and D. Picchietti of the College of Medicine at the University of Illinois at Urbana-Champaign recently set out to determine if celiac disease might play a role in iron deficiency in patients with Restless Leg Syndrome.
    The doctors evaluated a series of four patients with Restless Leg Syndrome and blood ferritin below 25ng/mL, who had shown positive blood tests for celiac disease. Doctors confirmed celiac disease for all four patients via duodenal biopsy and positive reaction to a gluten-free diet. In each case, Restless Leg Syndrome symptoms improved, with two patients discontinuing Restless Leg Syndrome medication and two responding positively without medication.
    The doctors are recommending simple, low-cost blood tests to screen for celiac disease in patients who have Restless Leg Syndrome with low serum ferritin, but who otherwise show no clear cause for iron deficiency.
    They also note that diagnosis and treatment of celiac disease is likely to improve the outcome for those patients with Restless Leg Syndrome, as well as to better identify people at risk for the significant long-term complications associated with celiac disease.
    Restless Leg Syndrome is just the latest neurological disorder to show a connection to celiac disease. Stay tuned as more information  becomes available.

    Source: Sleep Med. 2009 Jan 10. PMID: 19138881

    Jefferson Adams
    Celiac.com 04/22/2010 - Restless leg syndrome (RLS) is a common neurological condition, with generally unknown causes, that is sometimes associated with specific disorders such as iron deficiency. Even though celiac disease is an autoimmune condition, people with celiac disease often suffer from associated malabsorption-related iron deficiency anemia and peripheral neuropathy.
    A team of researchers recently set out to assess rates of restless leg syndrome in adults with celiac disease. The team included Marcello Moccia, MS, Maria Teresa Pellecchia, MD, PhD, Roberto Erro, MD, Fabiana Zingone, MD, Sara Marelli, MD, Damiano Giuseppe Barone, MD, Carolina Ciacci, MD, Luigi Ferini Strambi, MD, and Paolo Barone, MD, PhD.
    They are variously associated with the Department of Systematic Pathology, the Department of Neurological Sciences at University Federico II and IDC Hermitage Capodimonte, Naples, Italy, and the Sleep Disorders Center, University Vita-Salute San Raffaele, Milan, Italy.
    For their study, the team enrolled 100 adult patients for features of celiac disease, iron metabolism, clinical and neurological conditions, and enrolled another 100 people from the general population as control subjects. These subjects were matched for age and sex.
    To determine the presence of restless leg syndrome in celiac disease patients and controls, the team applied the four essential diagnostic criteria of the International restless leg syndrome Study Group, in addition to conducting a neurological examination. They gauged restless leg syndrome severity using the International restless leg syndrome Study Group rating scale.
    The results showed a 31% prevalence of restless leg syndrome among subjects with celiac disease, which was much higher than the 4% prevalence in the control population (P < 0.001). The average restless leg syndrome severity among celiac disease patients was moderate (17 ± 6.5).
    In the subjects with celiac disease, the team saw no significant correlation between restless leg syndrome and either gluten-free diet or iron metabolism; even though the celiac patients with restless leg syndrome showed significantly lower hemoglobin levels than celiac patients without restless leg syndrome (P = 0.003).
    They also found no connection between restless leg syndrome and other possible causes of secondary restless leg syndrome, including signs of peripheral neuropathy, pregnancy, end-stage renal disease, and pharmacological treatments.
    Their study increases the number of neurological disorders associated with celiac disease, and supports screening all celiac disease patients for restless leg syndrome.
    SOURCE: Movement Disorders; 13 Apr 2010
    DOI 10.1002/mds.22903


    Jefferson Adams
    Celiac.com 07/17/2012 - To follow up on reported associations between celiac disease and peripheral neuropathy, a research team recently conducted a study of peripheral neuropathic symptoms in celiac disease and inflammatory bowel disease.
    T.C. Shen, B. Lebwohl, H. Verma, N. Kumta, C. Tennyson, S. Lewis, E. Scherl, A. Swaminath, K.M. Capiak, D. DiGiacomo, B.P. Bosworth, T.H. Brannagan 3rd, and P.H. Green. They are affiliated with the Department of Medicine, Division of Digestive and Liver Diseases at Columbia University Medical Center in New York, NY.
    For their study, the team recruited patients celiac disease and/or inflammatory bowel disease from the gastroenterology clinics at a medical center and local support groups. The team recruited control subjects without celiac disease or inflammatory bowel disease from the staff of the medical center, and from relatives and attendees at support groups.
    Researchers had each participant complete a survey that used two validated peripheral neuropathy standards to define and characterize peripheral neuropathy.
    The team found that 38.9% of participants with celiac disease and 38.7% in the inflammatory bowel disease group (P = 0.97) met criteria for peripheral neuropathy compared with 20.5% in the control group (P < 0.001).
    Using multiple logistic regression, the researchers found that those with celiac disease had higher odds of peripheral neuropathy (odds ratio, 2.51; 95% confidence interval, 1.82-3.47), adjusted for age, gender, diabetes, vitamin B12 deficiency, and cancer history; as did those with inflammatory bowel disease (odds ratio, 2.78; 95% confidence interval, 1.85-4.18).
    The results showed that people with celiac disease and/or inflammatory bowel disease
    had higher rates of peripheral neuropathy than did the general population.
    Source:
    J Clin Neuromuscul Dis. 2012 Mar;13(3):137-45.

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
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    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
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    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
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    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
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    Source:
    cnbc.com