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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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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    GLUTEN SENSITIVITY MAY TRIGGER SENSORY GANGLIONOPATHY


    Jefferson Adams

    Celiac.com 10/28/2010 - A team of researchers recently found that gluten sensitivity can play a role in triggering a certain type of neurologic dysfunction, called sensory ganglionopathy, and that the condition may respond to a strict gluten-free diet.


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    The team conducted a retrospective observational case study on 409 patients with different types of peripheral neuropathies, including seventeen patients with sensory ganglionopathy and gluten sensitivity.

    The research team was made up of M. Hadjivassiliou, MD, D.G. Rao, MD, S.B. Wharton, PhD, D.S. Sanders, MD, R.A. Grünewald, DPhil, and A.G.B. Davies-Jones, MD. They are affiliated variously with the Departments of Neurology, Neurophysiology, Neuropathology, and Gastroenterology at Royal Hallamshire Hospital in Sheffield, UK.

    Neurological issues are common in people with celiac disease and gluten-sensitivity. On eof the most common neurological issues in these people is called peripheral neuropathy. The most common type of neuropathy seen in people with gluten sensitivity is sensorimotor axonal.

    The team reviewed data on 409 patients with different types of peripheral neuropathies. All of these patients had been followed for a number of years in dedicated gluten sensitivity/neurology and neuropathy clinics.

    Fifty-three of these patients (13%) showed clinical and neurophysiologic evidence of sensory ganglionopathy. Seventeen of these fifty-three patients (32%) showed positive blood screens for gluten sensitivity.

    The median age of those with gluten sensitivity was 67 years, with symptom onset starting at 58 years on average.

    Seven of those with positive blood screen evidence gluten sensitivity showed enteropathy upon biopsy. Fifteen patients went on a gluten-free diet, resulting in stabilization of the neuropathy in eleven of the fifteen.

    The remaining four patients did not follow the gluten-free diet and their conditions worsened, as did the two patients who declined dietary treatment. Autopsy tissue from three patients showed inflammation in the dorsal root ganglia with degeneration of the posterior columns of the spinal cord.

    These results led the team to conclude that sensory ganglionopathy can result from gluten sensitivity and may respond positively to a strict gluten-free diet.

    Source:




    Image Caption: New study on gluten sensitivity sensory ganglionopathy.
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    Guest Pattymack

    Posted

    Good to see research and articles on gluten sensitivity as a separate (from celiac disease) condition.

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    Guest Rosemary Melcher

    Posted

    What does ganglionopathy mean? What are the symptoms? I am 78, diagnosed with celiac 6 years ago and have trouble enough understanding a gluten-free diet, let alone medical words. Can you help an elderly declining brain? Is a declining brain a symptom of celiac?

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    Guest Mary McBender

    Posted

    What does ganglionopathy mean? What are the symptoms? I am 78, diagnosed with celiac 6 years ago and have trouble enough understanding a gluten-free diet, let alone medical words. Can you help an elderly declining brain? Is a declining brain a symptom of celiac?

    It looks like Rosemary is still waiting for an answer, after almost 3 years. Shame on the authors and the website for not caring about feedback and questions. I think the question is quite legitimate! Or is this forum only for MDs?

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    Guest Gryphon

    Posted

    It looks like Rosemary is still waiting for an answer, after almost 3 years. Shame on the authors and the website for not caring about feedback and questions. I think the question is quite legitimate! Or is this forum only for MDs?

    This is not a forum - we request that people not post questions in comments specifically for this reason. We have a forum for such questions: http://www.celiac.com/gluten-free/

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    admin
    Celiac.com 06/25/2003 - The Neuropathy Association -- On May 27, 2003 a link between Peripheral Neuropathy and Celiac Disease was reported by physicians at the Weill Medical College of Cornell University and New York Presbyterian Hospital, according to The Neuropathy Association. Peripheral Neuropathy, which affects up to 20 million people in the U.S., can cause pain, numbness and weakness in the arms and legs and, when left untreated, can progress to debilitation.
    In an article published in todays Neurology, five percent of all patients with neuropathy were found to also have celiac disease, which results from an allergy to gluten in bread and other wheat products, and is estimated to affect one out of every 150 people. Based on the diagnosis, we are now able to treat a substantial number of patients with neuropathy who previously could not be helped, said Dr. Russell Chin, the first author of the paper.
    In addition, patients with celiac disease tended to have a type of neuropathy called small fiber neuropathy which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression, noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help.
    Celiac disease is known to run in families, and in several of the cases, other family members were affected. Some were erroneously diagnosed with Charcot-Marie-Tooth disease, an inherited form of neuropathy due to genetic mutations. Not all familial cases of neuropathy are due to Charcot-Marie-Tooth disease, noted Dr. Latov. Peripheral neuropathy can also occur in association with other causes for neuropathy that run in families, such as diabetes or autoimmunity, for example.
    The article also notes that one third of the celiac neuropathy patients did not have any gastrointestinal symptoms such as malabsorption, abdominal pain or diarrhea, which are associated with celiac disease. What many people dont realize, notes Dr. Peter Green, Director of the Celiac Disease Center at the New York Presbyterian Hospital, and co-author of the paper, Is that 50% of adults with celiac disease have few or no gastrointestinal symptoms, and present with other manifestations such as anemia, or as in this case, peripheral neuropathy. Treatment consists of eliminating gluten or wheat containing foods in the diet.
    At present, patients with neuropathy are not routinely tested for celiac disease. Based on the new study, however, patients and physicians should be aware that anyone with unexplained neuropathy or pain should be tested for celiac disease regardless of whether or not they have the classic gastrointestinal symptoms.
    About The Neuropathy Association:
    The Neuropathy Association is a public, non-profit, charitable organization, founded by patients with neuropathy and their friends and families, whose mission is to provide support and education, and fund research into the causes and treatments of neuropathy. It is a rapidly growing, broad based organization, with over 70,000 members, and over 200 support groups and chapters throughout the US. For more information about peripheral neuropathy and The Neuropathy Association, visit our web site at http://www.neuropathy.org, or contact us at 60 E. 42nd St, Suite 942, New York, N.Y. 10165, Tel: 212-692-0662, e-mail: info@neuropathy.org.
    Contact information:
    Media Contact: Jeanne Abi-Nader
    Tel: 212-484-7954
    E-mail: jabi-nader@rlmnet.com
    Norman Latov, M.D., Ph.D., Professor of Neurology and
    Neuroscience, Weill Medical College of Cornell
    University, and Medical and Scientific Director, The
    Neuropathy Association.
    Tel: 212-888-8516
    E-mail: nol2002@med.cornell.edu.
     

    admin

    Celiac.com 12/28/2006 – Antonio Tursi and colleagues at the Digestive Endoscopy Unit, Lorenzo Bonomo Hospital, Andria, (BA), Italy have published a study which concludes that any neurological damage caused by celiac disease may be irreversible—even after treatment with a gluten-free diet. Although the study is relatively small, its conclusions are important—especially to those who suffer from the neurological effects of celiac disease. More research needs to be done to determine why antineuronal antibodies persist in treated celiacs. It would be interesting to see if the removal of other common offending proteins (such as casein, soy, corn, eggs, etc.) from the diets of the patients in this study would have any effect on their antineuronal antibody levels.
    The following article that was recently published on Celiac.com may provide further insight:
    Gluten Causes Brain Disease! By Prof. Rodney Ford M.B., B.S., M.D., F.R.A.C.P. Below is the abstract of the study:


    Dig Dis Sci. 2006 Sep 12
    Peripheral Neurological Disturbances, Autonomic Dysfunction, and Antineuronal Antibodies in Adult Celiac Disease Before and After a Gluten-Free Diet.
    Tursi A, Giorgetti GM, Iani C, Arciprete F, Brandimarte G, Capria A, Fontana L.
    Digestive Endoscopy Unit, Lorenzo Bonomo Hospital, Andria, (BA), Italy.
    Thirty-two consecutive adult celiac disease patients (pts), complaining of peripheral neuropathy (12 pts), autonomic dysfunction (17 pts), or both (3 pts), were evaluated to assess the presence of neurological damage (by clinical neurological evaluation and electrophysiological study) and antineuronal antibodies and to assess the effect of a gluten-free diet on the course of the neurological symptoms and on antineuronal antibodies. At entry, 12 of 32 (38%) pts showed signs and symptoms of neurological damage: 7 of 12 (58%), peripheral neurological damage; 3 of 12 (25%), autonomic dysfunction; and 2 (17%), both peripheral neurological damage and autonomic dysfunction. The overall TNS score was 105 at entry. Anti-GM1 antibodies were present in 5 of 12 (42%) pts: 3 showed peripheral neurological damage and 2 showed both peripheral neurological damage and autonomic dysfunction. One year after the gluten-free diet was started, histological lesions were still present in only 10 of 12 (83%) pts. TNS score was 99, 98, 98, and 101 at the 3rd, 6th, 9th, and 12th month after the gluten-free diet was started, so it did not improve throughout the follow-up. None of the pts showed disappearance of antineuronal antibodies throughout the follow-up. We conclude that adult celiac disease patients may show neurological damage and presence of antineuronal antibodies. Unfortunately, these findings do not disappear with a gluten-free diet.

    Tina Turbin
    Celiac.com 04/04/2011 - Having been diagnosed with celiac disease, I know from having to follow a strict gluten-free diet that monitoring one's diet and health can be inconvenient, time-consuming, and challenging. Similarly, keeping one's blood sugar level under control for diabetics can be tough, but studies are showing how important this is, as it has been shown to prevent diabetic neuropathy, that is, nerve damage peculiar to diabetics, and its devastating effects.
    According to Tedd Mitchell, M.D., President of the Texas Tech University Health Sciences Center, there are two types of diabetic neuropathy, peripheral and autonomic. Peripheral neuropathy is "a degeneration of the nerves in the feet and hands," according to Dr. Mitchell, which, as it occurs "slowly but progressively," reduces sensitivity to touch while heightening sensations of pain and itching. The second type is autonomic neuropathy, which is, Dr. Mitchell says, "damage to nerves that control bodily functions, such as digestion, urination, heart rate, blood pressure, sexual function and even sweating." Some of the symptoms of this type are digestive problems, urinary problems, and reductions in blood pressure.
    The longer one has been diabetic, the higher one's risk for neuropathy. Thankfully, evidence supports that long-term blood sugar control can reduce this risk. It may seem like a challenge for some diabetics to control their blood sugar, but with some determination and effort, it can successfully be achieved.
    MedicalMoment.org, a website developed by Columbia St. Mary's, an organization of hospitals and clinics, offers various ways to get started controlling your blood sugar. First, in liaison with your health care provider, test your blood sugar and keep a record of your results and pertinent information, on a daily basis. Follow your doctor's prescribed diabetes medicine plan while eating foods low in fat, sugar, and sodium and high in fiber on a regular basis, aiming for the same caloric intake every day. It's important to get regular exercise, starting slowly if need be, such as swimming and walking. Your diet and exercise routine should be geared toward maintaining your ideal weight, which should be determined by your health care provider. You'll want to stay aware of signs of possible nerve damage such as sores that won't heal, blisters, swelling, and ulcers.
    MedicalMoment.org also offers several tips for keeping blood sugar under control. Low blood sugar should be treated quickly with the use of special glucose gel or tablets. Smoking, which harms the heart and the circulatory system, should be avoided. Next, learn as much as possible about your diabetic condition and treatment; knowledge is power in this case, as I know from being a celiac disease patient. Lastly, avoid stress and get support by staying connected with friends and relatives or a support group who can help you keep your blood sugar under control.
    It isn't unusual for me to focus some of my work as an author, researcher, and gluten-free and health advocate, on the area of diabetes; after all, according to Celiac.com, evidence is growing which supports that people with Type 1 diabetes are at high risk for celiac disease. In this research, the necessity of maintaining blood sugar is clear. With the help of your medical practitioner and other resources, you can achieve proper self-care in controlling blood sugar level and lower this risk of nerve damage.
    Resource:
    Mitchell, Dr. Tedd. "Nerve damage: One more reason to keep blood sugar under control." USA Weekend: July 9-11, 2010.


    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 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
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    Read the full study in Science.

    Tammy Rhodes
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    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    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.
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    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.
    Source:
    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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