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Showing results for tags 'neuropathy'.
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For over a year I had pain and tingling numbness in both arms and on the outer thighs. After being sent to Duke University Hospital and testing including skin biopsies it was determined to be SMALL FIBER NEUROPATHY. Genetic testing done on the samples determined that the cause is Celiac disease. Has anyone else heard of this or experienced it? Now I am so strict about Gluten but the small fiber (large problem) neuropathy has spread and at times pain is unbearable. I think if people were aware of the many facets of this Celiac disease they would find empathy and better compliance for those who suffer.
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Celiac.com 10/04/2023 - Neuropathic pain is a challenging condition with complex diagnostic and treatment issues. Although we've made progress in understanding and treating neuropathy, many aspects of this condition remain unclear. One intriguing aspect of neuropathy is that it can cause both sensory loss and pain, despite being driven by abnormal nerve signaling. Voltage-gated sodium channels, crucial for proper nerve function and communication, can go awry in neuropathy, triggering hyperexcitability and pain. Even with a number of diagnostic tools available, neuropathy patients often face delays in getting an accurate diagnosis for the underlying cause. The research team included Giustino Varrassi, Stefano Tamburin, Panagiotis Zis, Vittorio A. Guardamagna, Antonella Paladini, and Martina Rekatsina. They are variously affiliated with the department of Pain Medicine, Paolo Procacci Foundation, Rome, ITA; the Department of Neurology, University of Verona, Verona, ITA; the Department of Neurology, University of Cyprus, Nicosia, CYP; the depertment of Anesthesia, IEO, Milano, ITA; the Department of MESVA, University of L'Aquila, L'Aquila, ITA; and the department of Pain Management, Basildon University Hospital, London, GBR. The prevalence of pain varies depending on the type of neuropathy, with chronic idiopathic axonal polyneuropathy being one of the most painful forms. In fact, more than half of patients with this condition experience pain. A newer consideration in the world of neuropathy is gluten neuropathy, a type of peripheral neuropathy. Detecting this condition may require specialized tests, like electrochemical conductance testing of the hands and feet to assess sudomotor dysfunction, aka sweat gland innervation. For people with confirmed gluten sensitivity or celiac disease, gluten neuropathy is a common neurological complication, and adopting a gluten-free diet can help alleviate some of the symptoms. In Greece, a neuropathic pain registry was established in 2014 to collect real-world data from neuropathic pain patients. While still in its early stages, this registry has already provided valuable demographic and treatment information. Interestingly, the data suggests that many patients are not receiving optimal prescriptions and recommended interventional procedures. Many Greek pain clinics are working to raise awareness among people who suffer from neuropathic pain, and to encourage their participation in this crucial registry, which could help to improve the understanding and management of neuropathic pain more broadly. Read more in Cureus.com
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Celiac.com 12/25/2019 - Kevon Looney, the 6'9" 23-year-old forward for the NBA's Golden State Warriors, has announced a change to a meat-free, gluten-free diet, aimed at improving a neuropathic condition, which contributed to a hamstring issue that has plagued him since training camp earlier this season. Looney is no stranger to dietary changes. Prior to the 2017-2018 season, he lost 30 pounds with the help of a personal trainer, some training adjustments, and a switch to a modified Paleo diet. The latest dietary change came after Looney visited the Mayo Clinic in Rochester, Minn., last month, presumably to follow-up on the neuropathic issues that affect his hips. Looney's plan of attack included giving up meat and gluten, as meat-free and gluten-free diets have been shown to improve a number of neuropathy cases. Now a gluten-free and pescatarian, Looney's father, Kevin, serves as his personal chef. Meals now include things like blackened catfish, baked salmon, and vegetables, along with potatoes. The Warriors have struggled so far this season, and are doubtless looking for Looney's diet to boost his health, and hopefully their chances for turning around what has thus far been a decidedly losing season. Do you or a loved one suffer from neuropathy? Have you seen any improvement on a gluten-free diet? Share your experience in our comments below. Read more at NBCSports.com
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Hi Everyone, I hope you are all doing well! I am writing with a question about Celiac-related neuropathy. I have been gluten-free now for a year since diagnosed with Celiac, at which point I was experiencing a lot of tingling in my hands and feet/legs. I know that neuropathy is a condition often associated with Celiac, but what I have not been able to find out is it the neuropathy only occurs after having eating gluten or can be a general symptom of the disease. I am very strict with my diet and do not suspect I am ingesting any gluten; however, I am still experiencing the tingling. It's more pronounced after eating; for example, I noticed it today after having eaten a pear. (No way that isn't gluten-free!) Have any of you experienced neuropathy related to Celiac even after having nixed gluten? Should I be concerned? Thank you! This forum is a godsend. It's so helpful being able to hear about other people's experiences on topics to which doctors don't always seem to have answers. Friendly greetings! Lauren
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Hey Everyone! I’m pretty stressed and anxious about my healing and praying those of you more experienced might be able to help. A quick back story, I had my 2nd baby the end of Feb and became horribly ill at 6 weeks postpartum. Started with terrible abdominal pain every time I ate and slowly turned into numbness & tingling on the left side of my body. Also had all the typical GI symptoms, brain fog, exhaustion etc. After dozens of doctors appointments and being hospitalized I was finally diagnosed with Celiac on 6/4 by blood test and symptoms. Around the same time I started having scary allergic reactions to all the foods I was eating daily without issues. Some caused instant stomach pain, others made my face numb and throat swell, some made my neuropathy worse. The tests my GI ran showed food sensitivities to Soy, corn, wheat, shellfish, peanuts, treenuts, sesame & eggs however the allergy tests ran by my allergist showed zero food allergies (except celiac). I am 100% gluten free including my whole house, I don’t eat out and am following a strict AIP diet to try and heal my leaky gut per my Functional docs recommendation. I also don’t take any medication or vitamins as I was reacting to everything. I started to see some improvements the first few weeks of my diet however the past 2 weeks I’ve been having horrible allergy like symptoms to almost everything. I had one sip of gluten-free green tea for the first time and my face felt like it was on fire, I had this intense pressure in my face and it went tingly numb for hours. This has been happening daily. I feel like I can’t even think or see straight, I have occasional ringing in my ears, my GI symptoms are slowly regressing and my neuropathy has gotten worse again. I’m living off organic grass fed meat, poultry, steamed veggies (minus nightshades) and minimal fruit. I also get weekly B vitamin shots and biweekly multivitamin bags. I’m wondering if this could be a histamine issue? I have been eating tons of avocados, lemons and limes, maybe I just built up too many histamines or don’t have the enzymes to break them down properly? Anyone else have experience like this? I feel like I’m losing my mind and literally have almost no food I can eat. Plus I’m nursing so I’m starving all the time. Feeling so discouraged and scared of food :( Thanks for reading if you made it this far!
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I started to get peripheral neuropathy about three years ago. I am not at all diabetic and a healthy athletic 65 years old otherwise. I was also having a lot of knee pain after playing tennis. After researching and experimenting by omitting several things from my diet, I concluded that gluten seems to exacerbate both of those problems. Is peripheral neuropathy possibly a result of Celiac disease or gluten sensitivity? Anyone else have similar symptoms?
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Celiac.com 04/30/2019 - Doctors recognize that patients with gluten sensitivity, whether or not they have enteropathy, or even gastrointestinal symptoms, can suffer from a range of debilitating neurological manifestations. Researchers Panagiotis Zis and Marios Hadjivassiliou of the Academic Department of Neurosciences, Sheffield Teaching hospitals NHS Trust and University of Sheffield, Royal Hallamshire Hospital, Sheffield, UK, recently published an overview of current literature in an effort to assess the available treatment options for the neurological manifestations of gluten-related disorders, specifically, serologically confirmed gluten sensitivity and celiac disease. For patients with gluten sensitivity, ataxia is the most common neurological manifestation, followed by peripheral neuropathy. Other conditions linked to gluten sensitivity and celiac disease and discussed in the review include: epilepsy headache encephalopathy movement disorders cognitive impairment muscle disorders The team found that a strict gluten-free diet is effective in treating neurological manifestations of gluten-related disorders. Rarely, patients need additional immunosuppressive treatment, usually mycophenolate. There have been cases where gluten ingestion triggered schizophrenic episodes in an undiagnosed patient. Meanwhile, a number of studies have shown that a gluten-free diet seems to help improve symptoms of psychological, neurological and inflammatory conditions, including schizophrenia, neuropathy, and diabetes. Stay tuned for more news about gluten and related health issues. Read more in Current Treatment Options in Neurology
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Really hoping that someone will be able to help with the situation I’m currently facing. It’s a bit confusing (which seems to be the case with Celiac generally producing lots of strange side effects!) Okay, so I first received a positive celiac blood test via the GP in early 2018 after experiencing a few months of diarrhoea. It was triggered by a stomach virus in work that everyone seemed to get, but mine never quite went away. That’s when I headed to the doctor and got this positive celiac result, completely out of the blue! I have no celiac sufferers or other autoimmune diseases in the family (that we know of), so I couldn’t really understand how this had happened. I then got advice from the doctor to go completely gluten free immediately and she referred me for an endoscopy to confirm diagnosis (no mention of the fact that you need to be eating gluten to get a positive). So surprise surprise I got a negative endoscopy, and the gastro was absolutely certain that I wasn’t celiac for this reason. Despite this, I’d noticed that all of my diarrhoea and gastro symptoms disappeared pretty much immediately after stopping eating gluten. Based on this, I continued to cut gluten out. Also, I understand that a positive blood test alone is pretty much a sure diagnosis of celiac right? Anyway, onto this pesky tingling. A few months after my initial blood test diagnosis I noticed I was getting some very low level tingling in my lower legs. Very low level, easy to miss. I mentioned this to the gastro and he just suggested it could be some nutrient deficiencies still causing issues after the few months of diarrhoea. I stuck to a gluten free diet (with the occasional accidental slip up), hoping that the tingling would go away, but it’s still very much here and I’d say it’s slightly worse. It’s really hard to describe. It’s almost as if my lower legs are buzzing/vibrating. My skin feels really sensitive, so if I brush something against it I get a wave of tingles/shivers. It’s almost that skin sensitivity feeling you get if you have a fever (but I don’t have a fever). Does anyone have this? I was referred to a neurologist to check that there was nothing else going on. They did an MRI and a nerve conduction test, both came back absolutely fine. I also have no weakness/numbness etc. It’s just a sensation. But I don’t know what’s causing it and if it will ever go away. Would love to know if anyone has these sensory issues and how you improved them? I take multivitamins, magnesium and B12 with no change. Could I secretly be ingesting low levels of gluten which continue to cause problems, or could I have other food intolerances which cause systemic inflation. I’ve not yet cut out any food groups. Really hoping someone will be able to shed some light on this.
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Celiac.com 08/27/2019 - Patients with gluten neuropathy often have peripheral neuropathic pain, indicating the involvement of small fibers. The most common types of peripheral neuropathy in people with celiac disease and gluten sensitivity are length-dependent symmetrical sensorimotor neuropathies and sensory ganglionopathies. A team of researchers recently set out to describe the clinical characteristics of patients with celiac disease or gluten sensitivity and pure small fiber neuropathy (SFN). The research team included Pangiotis Zis, PG Sarrigiannis, DG Rao, DS Sanders, and M Hadjivassiliou. They are variously affiliated with the Academic Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK; and the Academic Unit of Gastroenterology, Sheffield Teaching Hospitals NHS Foundation Trust in Sheffield, UK. The research team reviewed the records for all patients referred to the Gluten-Related Neurological Disorders clinic with clinical and neurophysiological evidence of small fiber neuropathy. Blood screens indicated that all patients were gluten sensitive prior to starting a gluten-free diet. The team offered duodenal biopsy to all patients, except those patients with conditions that could cause small fiber neuropathy. The researchers found 9 males and 5 females with small fiber neuropathy and gluten sensitivity. Eleven of those patients underwent duodenal biopsy, and ten of those showed evidence of celiac disease enteropathy. Average age at onset of pain was 53.5 ± 11.4 years, while the average age of celiac disease/gluten sensitivity diagnosis was 50.8 ± 10.4 years. More than six out of ten patients reported feeling pain. Neurophysiological assessment suggested a length-dependent small fiber neuropathy in 11 patients, whereas in 2, a non-length dependent pattern was identified, suggesting that the predominant pathology lies in the dorsal root ganglia. This study reveals that small fiber neuropathy can be a feature of celiac disease and gluten sensitivity. The team recommends that patients with idiopathic small fiber neuropathy be screened for celiac disease and gluten sensitivity. Read more in Postgrad Med. 2019 Aug 6:1-5. doi: 10.1080/00325481.2019.1650609.
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I looked to see if this was already answered but didn't see it. After 2 years of taking it light with walking and just light weights letting the body be my guide. My joints and fatigue during recovery led my exercise for two years. I started to return to gym and my former modified gym routine. Frustratingly triggered neuropathy in my feet and fatigue. I was fine the other day but today within 12 minutes my feet went numb i tried switching from elliptical to bike and it continued on. Still ongoing now? I know I have not been glutened by food been very strict. Is this my fate now with exercise? Can exercise trigger my neuropathy. For the most part the neuropathy no exercise is gone now 32 months after the challenge. I thought I was all clear to get that gym membership and move out of walking and home exercise. Should I increase the b vitamins as body may demand more now that I am making more demands on my exercise routine? Or is this just something that can and does occur since neuropathy entered my life 7 years ago and reared its ugly head relentlessly after the challenge? Any advice or experience? Thanks
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Hello everybody, For few months now when I try to write on the computer I can no longer at least with my right hand have my usual typing speed my right hand is like rusty and my fingers twisting the strange movements to reach the keys on the keyboard so I do a lot more difficulties to write to the computer and many more typos by double or triple time. As for all the other actions of everyday life everyday life take place normally without any obstacle The only problem I encounter is when I type or I try to type, thing that I do often for work. At the beginning I thought about a problem of carpal tunnel or nerves tired from too much writing in fact the thing was manifested after a period in which I spent many hours of the day writing for many days. even after a week of rest, without having touched the computer, the problem has not been solved and after a few months it is still present a few months ago I was diagnosed probably celiac due to the positive results to antibodies from the blood tests but I have not yet done the biopsy that should confirm the disease and for this I have not yet completely eliminated the gluten from my diet because I was told that otherwise the biopsy would be invalidated. I have already taken an exam (EMG) from which nothing was found of abnormal neither the arms nor legs soon I will do further tests by both a neurologist and a rheumatologist in addition to the biopsy that I will have to perform. From your direct or indirect experience could these my symptoms be linked to celiac disease? Even writing this message I prefer now to do it with voice commands rather than straining my right hand. And I'm a 30 yo with very high skills in computer science and I used to type very very fast (my left hand still do) Sorry for my mistakes in english (it's not my mother tongue) Hope to read from you soon
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Celiac.com 09/12/2018 - Many people with celiac disease develop peripheral neuropathy, also known as gluten neuropathy. A team of researchers recently set out to determine rates of neuropathic pain in patients with seemingly idiopathic peripheral neuropathy and gluten sensitivity, and to make note of any contributing factors. They included patients with positive antigliadin, endomysial, and/or transglutaminase antibodies, with or without enteropathy. The research team included P Zis, PG Sarrigiannis, DG Rao, and M Hadjivassiliou. They are affiliated with the Academic Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Royal Hallamshire Hospital, Glossop Rd, Sheffield, South Yorkshire, UK. They invited all consecutive patients with gluten neuropathy attending a specialist gluten/neurology clinic to participate in the study. They used the DN4 questionnaire and the visual analog scale to assess pain levels. They used the Overall Neuropathy Limitations Scale to assess the severity of neuropathy, along with the Mental Health Index (MHI-5) to assess patients' general mental health status. A total of 33 out of 60 patients with gluten neuropathy showed neuropathic pain. The team found no significant differences between the painful, and the non-painful groups in terms of age, gender, neuropathy severity and neuropathy type. Over half of patients with painless gluten neuropathy followed a strict gluten-free diet, compared with just 21.2% of those with painful neuropathy. Patients with painful gluten neuropathy also showed significantly worse MHI-5 scores. After adjusting for age, gender and MHI-5 scores, multivariate analysis showed that, strict gluten-free diet lowered the odds of peripheral neuropathic pain by nearly 90%. Most patients with gluten neuropathy commonly have neuropathic pain, which is associated with poorer mental health status. A strict gluten-free diet might substantially reduce rates of peripheral neuropathic pain in patients with gluten neuropathy. Read more at: J Neurol. 2018 Jul 21. doi: 10.1007/s00415-018-8978-5.PMID: 30032386
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Celiac.com 05/28/2018 - Myasthenia gravis is a medical condition caused by a disturbance in the communication between nerves and muscles. Symptoms include weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing. There is no cure for myasthenia gravis, but treatment can help symptoms to improve. Some case reports have indicated a connection between celiac disease and myasthenia gravis (MG). A team of researchers recently set out to determine if those reports are accurate, and, if so, what the connection might be between celiac disease and risk for myasthenia gravis. The research team included Sujata P. Thawani, Thomas H. Brannagan, Benjamin Lebwohl, Peter H. R. Green, and Jonas F. Ludvigsson. They are variously affiliated with the Department of Neurology, New York University School of Medicine, New York, NY USA; the Peripheral Neuropathy Center, Neurological Institute, Columbia University, College of Physicians and Surgeons, New York, NY USA; the Celiac Disease Center, Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY USA; the Department Medical Epidemiology and Biostatistics, Karolinska Institutet, 171 77 Stockholm, Sweden; the Department of Pediatrics, Örebro University Hospital, Örebro University, Örebro, Sweden; and with the Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK. The team found 29,086 people who had celiac disease in Sweden between 1969 to 2008. The team then compared these individuals with 144,480 matched control subjects. They used Cox regression to estimate hazard ratios (HRs) for future MG, as identified through ICD codes. Their study period covered 326,376 person-years of follow-up in celiac patients. Over that period, they found 7 cases of MG, for a total of 21 cases per million person-years. In the control group, the team found 22 cases of MG over 1,642,273 years of follow-up, for a total of 14 cases per million person-years, which yielded an HR of 1.48 (95% CI = 0.64–3.41). The HRs did not change when stratifying for age, sex or calendar period. HRs were highest in the first year after follow-up, though insignificant. Individuals with celiac disease showed no increased MG risk for more than 5 years after celiac diagnosis (HR = 0.70; 95% CI = 0.16–3.09). Fortunately, this study showed no increased risk for myasthenia gravis in celiac disease patients. Source: BMC Neurol. 2018; 18: 28.Published online 2018 Mar 12. doi: 10.1186/s12883-018-1035-2
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I have neuropathy in hands and feet which is spreading up my arms and legs. I was diagnosed with low b12 and have been having three injections a week since April but the neuropathy is getting worse. Years ago I suffered a couple of bouts of ibs but, apart from colic if I overdo fruit and veg, my digestion is fine. Despite having a really good diet I was also vit d deficient and have low IgA. Another random symptom is that my front teeth have yellowed but with a horizontal white stripe across them. The thing scaring me to death is that I've lost 10lbs for no good reason. Is there any chance some of this could be gluten related?
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I'll try to give a brief history before I ask my question to give some context. About two and a half years ago I noticed myself feeling "unusual" after eating meals, particularly lunch. I would nearly faint or my vision quickly black out over a second or two after standing in particular that sent me to my primary care, thinking I had developed orthostatic hypotension at only 29 years old. Ran MRI and CT of my brain, and MRA of my carotids, did some labs, and all was well so he pretty much wrote me off. A few months later and the left side of my body from face to toes would feel weak and burn (but without actual weakness) in sudden bouts lasting a couple hours. Naturally I freaked out and went to the ER thinking in having a TIA, again at an unusually young age. Well everything was normal. This got worse and lasted longer, and when my foot began to get "floppy", I sought out a neurologist. He did some basic labs which were normal and an EMG that was borderline and thought I had CIDP. I sought a second opinion with a university neurology department, had a lumbar puncture and MS protocol MRI including down my spine, all normal, told I had idiopathic small fiber naturopathy. Sought a third opinion (now just over two years have elapsed since seeing my PCP due to long follow-up intervals) from a neurologist that's double board certified in this area, did a thorough lab workup, and DGP IgG was very high (otherwise the celiac panel was normal), and everything else under the sun was normal. He said "looks like you got celiac disease. Better clean out your pantry." By this time I thought I was losing my mind, my whole body would feel like hellfire for hours a day and my feet flopped and my hands dropped things randomly. After about a week of a gluten free diet the burning was 75% better. I accidentally ate a chik-fil-a sandwich driving home late 3 weeks into it, not thinking until after I ate it. My gut felt like something was ripping it open and my body burned for 5 straight days. Never forgot again. Also pretty much confirmed the diagnosis since I'm still waiting on my upper endoscopy. So the question is this: do those of you with celiac neuropathy tend to have random sudden onset of numb or weak sensation on the whole of one side of your body, that switches sides, even on the same day? Lately my cheek around my left side of the lip and my left side of my tongue got numb too. I ask my neurologist these things whenever I follow-up and his answer is always "small fiber neuropathy causes all kinds of weird symptoms". I know what peripheral neuropathy is supposed to present as, but these autoimmune neuropathies don't seem to follow any rules. By the way, the burning and orthostatic hypotension are pretty much gone now on a gluten free diet for 5 months. The feet ate still floppy though.
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Celiac.com 03/12/2018 - People with celiac disease often experience nerve pain, with can lead to actual nerve damage. Sometimes, neuropathy can be one of the few physical symptoms of celiac disease. Previous studies have linked gluten sensitivity with nerve damage in the hands and feet, which can cause weakness, numbness and pain; a condition called gluten neuropathy. For some time, doctors have suspected that gluten may play a role in triggering neuropathy in celiac patients, and that a gluten-free diet may help to alleviate the problem. The study by Dr. Zis and his team included 60 people, averaging 70 years of age, who had been diagnosed with gluten neuropathy. More than half of these patients also reported neuropathy-related pain. The data showed that diet was definitely a factor in the presence and severity of neuropathy. Nearly sixty percent of the patients without pain were following a gluten-free diet, but just 21 percent of patients with pain were avoiding gluten. After adjusting for factors including age, sex and mental health, the team concluded that neuropathy patients who followed a gluten-free diet experienced 89 percent lower risk of pain. The team’s research supports the idea that gluten-free diet may help reduce nerve pain in some people with gluten sensitivity. The findings are important, says lead author Dr. Panagiotis Zis, of the University of Sheffield in the United Kingdom, because they indicate that “a relatively simple change in diet could help alleviate painful symptoms tied to gluten neuropathy.” Dr. Zis and his colleagues plan to present their findings at the annual meeting of the American Academy of Neurology (AAN), this April in Los Angeles. As research into gluten intolerance has progressed, more and more researchers have come to regard it as “a spectrum of disease as opposed to one easily defined disease," said neurologist Sami Saba, who was not involved in the new study. While just 1 percent of Americans have celiac disease, many more could conceivably have gluten sensitivity, which is “marked by immune-system antibodies to gluten in blood tests, or symptoms of gluten sensitivity even in the absence of antibodies,” Saba said. Dr. Zis emphasizes that the study showed a connection, but did not prove causation. It did not prove that gluten causes neuropathy in these patients. Further study is needed to confirm the team’s results, and to determine for certain that the pain relief they saw in patients was the result of a gluten-free diet. In the meantime, doctors should consider a gluten-free diet in patients with neuropathy, as it may help to alleviate their symptoms, and carries minimal risk. Source: usnews.com
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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.
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Celiac.com 06/01/2015 - Earlier research on celiac disease and neuropathy has been hampered by the use of inpatient data, low study power, and lack of information on neuropathic characteristics. A team of researchers recently set out to accurately assess both relative and absolute risk of developing neuropathy in a nationwide population-based sample of patients with biopsy-verified celiac disease. The research team included Sujata P. Thawani, MD, MPH; Thomas H. Brannagan III, MD; Benjamin Lebwohl, MD, MS; Peter H. R. Green, MD; and Jonas F. Ludvigsson, MD, PhD. They are variously affiliated with the Peripheral Neuropathy Center at the Neurological Institute of Columbia University College of Physicians and Surgeons, the Celiac Disease Center in the Department of Medicine at Columbia University College of Physicians and Surgeons in New York, New York, with the Department of Medical Epidemiology and Biostatistics at the Karolinska Institutet in Stockholm, Sweden, and with the Department of Pediatrics, Örebro University Hospital, Örebro University, Örebro, Sweden. For their study, the team collected data on small-intestinal biopsies conducted at Sweden’s 28 pathology departments from 1969 to 2008. They compared the risk of neuropathy in a total of 28 ,232 celiac disease patients, all with villous atrophy, Marsh 3, against results from 139, 473 age- and sex-matched non-celiac control subjects. They used Cox proportional hazards regression to estimate hazard ratios (HRs), and 95% confidence intervals (CIs), for neuropathy as defined by relevant International Classification of Diseases codes in the Swedish National Patient Register; including both inpatient and outpatient data. They found that patients with biopsy-verified celiac disease faced a 2.5 times higher risk of developing neuropathy (95% CI, 2.1-3.0; P < .001). Celiac patients also had an increased risk of developing chronic inflammatory demyelinating neuropathy (2.8; 1.6-5.1; P = .001), autonomic neuropathy (4.2; 1.4-12.3; P = .009), and mononeuritis multiplex (7.6; 1.8-32.4; P = .006). However, the team found no association between celiac disease and acute inflammatory demyelinating polyneuropathy (0.8; 0.3-2.1; P = .68). The team found a significantly increased risk of neuropathy in patients with celiac disease, and they are recommending that doctors screen patients with neuropathy for celiac disease. Source: JAMA Neurol. Published online May 11, 2015. doi:10.1001/jamaneurol.2015.0475
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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.
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Celiac.com 11/27/2002 - According to recommendations made at the 127th Annual Scientific Meeting of the American Neurological Association (ANA), a diagnosis of celiac neuropathy should be considered in patients with neuropathy of otherwise unknown etiology, including in patients without any gastrointestinal symptoms. Dr. Russell L. Chin and colleagues from the Columbia University College of Physicians and Surgeons in New York, New York reviewed the records of 20 patients who had neuropathy and biopsy-confirmed celiac disease and found that six had neuropathic symptoms with no gastrointestinal symptoms and three had the neuropathic symptoms before any symptoms of celiac disease appeared. All of the patients had burning, tingling and numbness in their hands and feet that included distal sensory loss, and nine had diffuse paresthesias that involved the face, trunk, and/or lumbosacral region. Two of these patients also exhibited weakness. Electromyography (nerve conduction) studies were normal or slightly abnormal in 18 of the patients and sural nerve biopsies that were examined in three of the patients revealed moderate to severe axonopathies. Thirteen of the patients tested positive for ganglioside antibodies using the agglutination assay, and celiac disease was seen in five percent of all neuropathy patients, and in 20 percent of patients who were seen at the institution for neuropathy with normal electrophysiological studies. Based on these results and the fact that 10 percent of patients with celiac disease exhibit associated neurological disease, usually in the form of peripheral neuropathy or ataxia, Dr. Chin recommends that all patients with neuropathy of unknown origin should be screened for celiac disease, even if they have no gastrointestinal symptoms.
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