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I hope not to make this long but I am in dire need of advice. I have been having these episodic seizure and stroke like symptoms. It starts with my eyes fluttering. I typically slump over. My legs work but I can't lift my head. Sometimes the left side of my face goes numb. I am completely unable to think or speak. It's like my mouth won't move right. If I can move my hands/arms, then I can not write or text. I also have difficulty walking (the leg I broke in a car accident gets really tight) This happens when I wake up, at work, walking, in shower, and sometimes in mid conversation, and once while driving (don't drive anymore). I've been to many doctors. Some nerve in my neck is crooked or slightly blocked. Referred to neuro. He thinks its a seizure. Long story short after several EEGs, MRI's, an MRA, and blood test they find: white spots on brain (unusual for age), positive western blot for Lyme (IgG), negative EEG, negative MRA. No strokes. negative spinal fluid. negative for lupus. Later, negative for Lyme on a C6peptide test. took Topamax and that stops migraines I was having, but not the episodes. referred to psych. she says no mental health issues after examining me. continue to see her because I'm so stressed about not feeling well. My general diagnosis is complex migraines. At some point I had a seizure like episode and was diagnosed with a complex partial seizure, but that was changed after the EEG's. June 2013: Go alcohol and gluten free. Then just gluten free. Miraculously I had no episodes for a week. After 2 weeks my hands and feet aren't numb. Oct 2013: Celiac panel is negative. My red blood, iron, and hemoglobin are all very low Now: Despite being gluten free, I find that I constantly get "glutened" by little things (bun accidentally left on my burger, corn tortillas that aren't really gluten-free, medicines etc) . One glutening can result in multiple episodes. The longest I've gone is a week and a half without episodes. Before June I had them everyday multiple times and they were very severe. I can't find a doctor that will answer my questions to save my life. I live near NIH, so you would think there are plenty of intelligent docs here but I have been largely unsuccessful. I like to work hard and I am ashamed at my performance (work and school) because I have these uncontrollable episodes. Does anyone struggle with this? What doctor did you go to? Have you been able to get anything other than "don't eat gluten"? Are you able to get a diagnosis?
Celiac.com 11/25/2017 - We have long known that gluten intolerance, both celiac disease and gluten sensitivity, are highly associated with neurological symptoms. Migraines, ataxia (unstable gait), seizures, schizophrenia – the list is long. But a recent research study just published last month sheds some new light on exactly what the mechanism may be. Understanding why these debilitating symptoms occur as a result of a gluten intolerance will, hopefully, go a long way toward increased awareness among the lay public and clinicians alike. It is certainly true that too many millions of Americans suffer the effects of a gluten intolerance unknowingly. They only know that they feel unhealthy but have no idea that gluten is the culprit. The digestive tract is sometimes called the second brain. Some say that is because it is second in importance to the brain. After all, if the food that is consumed doesn't turn into fuel that can effectively feed the 10 trillion cells in the body, those cells will be unable to perform their job and keep the body healthy. In fact, poor digestion is absolutely linked to poor health and increased onset of degenerative disease. This article in Current Pain and Headache Reports looks at another possibility for naming the digestive tract the second brain, and it simply stems from anatomy. The digestive tract actually has a ‘mind of its own'; more correctly, it has a nervous system of its own, called the enteric nervous system. ‘Enteric' simply means having to do with the intestine. This nervous system, according to research, is very similar to the brain housed in the head in that it is bathed in similar chemicals (called neurotransmitters – which, interestingly enough, are mostly produced in the gut!). It sends and receives impulses and records experiences and is influenced by emotions. Some proof of the latter: Have you ever been nervous and had diarrhea? This particular study stated that experiencing ‘adverse events' created a state of hypervigilance (a state of being overly responsive - not a good thing) in the nervous system which was associated with migraines and IBS. Such ‘hypervigilance' was previously only associated with the central nervous system – the one attached to the brain in the head. This group of researchers suggests that the initiation of hypervigilance may very likely lie in the enteric nervous system also. What this means is that if the small intestine is genetically sensitive to gluten and gluten is ingested, it could set off a nervous system response that could create disabling diseases, such as migraines and IBS, but likely others as well. The take-away message is that it is truly critical to diagnose gluten intolerance as soon as possible. Once that hurdle is surmounted it then needs to be followed with a program of nutrition, lifestyle and diet that will ensure healing of the small intestine and a ‘calming' of the hypervigilant nervous system. You may sometimes hear this referred to as healing a leaky gut. Here at HealthNOW we often see this clinically in patients who seem intolerant to many different foods and can't seem to enjoy stable improvement of their symptoms, even after they eliminate gluten from their diet. The reason for this insufficient improvement is that a comprehensive follow-up program is missing – a program that addresses what we call the Secondary Effects of Gluten. This entails evaluating for any other food sensitivities, cross reactive foods, a tendency towards autoimmune disease, the presence of any infectious organisms, healing the leaky gut, balancing the probiotic population, and more. While increasing awareness of the presence of gluten intolerance is absolutely critical, neglecting the secondary effects, as mentioned above, can result in long-term ill health that is truly preventable. Have you experienced such symptoms? Have you removed gluten but are only partially healthier? I'd love to hear from you. To your good health.
Dr. Ron Hoggan, Ed.D. posted an article in Spring 2014 IssueCeliac.com 11/10/2016 - So far, 2014 has been a challenging new year for me. I was reminded of some events that happened almost fifty years ago. Based on that reminder, I resolved to contact a former girlfriend, both to suggest that she get testing for celiac disease, and to apologize for some insensitive things I said and did when I was 17. She was a year younger than me and one grade behind me in school. She was very slender and exceedingly self-conscious about having what she called "a chest like a boy". (She may have been experiencing delayed development, as is sometimes seen in celiac disease.) Every new place we visited, she went looking for the washroom as soon as she could. Movie theatres, restaurants, libraries, everywhere we went, she found the washroom first. She even did that the first time she was at my mother's house, which occasioned an uncharitable comment from my mom. Pat was also troubled by some microscopic hair that was growing on her upper lip. It sounds silly now, but these things were important to her at the time. I remember telling her that nobody could see her "moustache" without a magnifying glass. Nonetheless, she put Nair on it and, for at least one day, had the brightest red upper lip I have ever seen. She said it was too sore to put makeup on, so it really drew a lot of unwanted attention. Until meeting my wife, I never knew anyone who was as honest about who she was. I regret that I didn't appreciate her as much as I should have, but that was partly due to my age. Time passed, way led onto way, and life happened. Forty nine years later, there I was, looking for her on Facebook and other social media. I tracked her through old phone numbers, family members, and I even searched the title on her parents' home. I was full of excitement about re-connecting with my old friend, a person with whom I had shared those last innocent days of adolescence. Our friendship had been cut short because her dad was transferred to a city more than 600 miles away, and she was annoyed with me because I had said and done some insensitive things. We never even wrote to each other. I used to talk about her with my students, explaining our mutual fascination with literature. I thought about her often, but never, until this year, considered contacting her. After about a month of searching, I eventually found her. Much to my dismay, I was almost a year too late. She had passed away on March 10th of 2013, at the age of 64. At the time of her death, she was in the process of being evaluated for Parkinson's disease. She was at home when she experienced her last, massive seizure, which resulted in brain death. Both of her daughters are heartbroken over Pat's sudden, unexpected passing. Already a widow, Pat had left this world before I took the time and made the effort to be in touch with her again. I was filled with sadness, disappointment, and regret when I first reached one of her daughters and confirmed that she was the person I had known. I still wonder, if I had gotten in touch a decade earlier, would she still be alive? Would a gluten-free diet have helped her? I'll never know, but the relevant literature does seem to suggest that a gluten-free diet may have helped (1, 2). Then, a week or so ago, I received an email from a concerned mom. Her athletic, teen-aged son was recovering from a brain concussion he had sustained. His friends who had sustained similar concussions, at other times, reported having recovered more quickly. His mom began to wonder if her son's slow recovery could be the result of his celiac disease, despite more than a decade of strict compliance with the diet. I didn't know. I could only offer the suggestions that he try daily supplementation with medium chain triglycerides, and a ketogenic diet, as they seem to have stopped my life-long tremors. I also suggested that he try avoiding dairy and soy as well, based on research I did 14 years ago for my grandson. This concerned mom also mentioned, "I generally find doctors are dismissive of the idea that celiac is linked to any issues outside the digestive tract, unless it's malnutrition-related, and they tend to think everything should be hunky-dory if you just follow the gluten-free diet." She went on to say that "It gets kind of old being thought of as the silly, overprotective mom." Neurological researchers have long known about a correlation between a variety of neurological ailments and gluten sensitivity, with or without celiac disease (3). We also know that neurological symptoms are commonly found among more than half of patients with celiac disease (4). Also, despite modern diagnostic protocols and technology, we are still seeing some overlap between celiac disease and both amyotrophic lateral sclerosis (5) and multiple sclerosis (6) as well as other neurological illnesses. For instance, the increased presence of the gene named Parkinson's disease 7 (PARK7) has been found in the duodenal mucosa of untreated children with celiac disease and may be implicated in the alteration of the permeability of their intestinal barriers (7). This further suggests an important link between gluten sensitivity and Parkinson's disease. This gene may predispose to the appearance of this most distressing disease later in life. Many people with celiac disease continue to experience neurological symptoms, despite compliance with a gluten-free diet. This may suggest that the neurodegenerative dynamics, once initiated by gluten ingestion, may continue, either in the absence of gluten or in response to trace amounts of gluten (10). I also started to wonder if the cellular and immune system clean-up processes that follow brain injuries might initiate some of the same damaging autoimmune processes in the brain? They might also occur in response to other dietary factors which may trigger autoimmune dynamics that mimic reactions to gluten, or maybe there is some other, unknown factor that triggers the brain damage. One research group on the leading edge of the investigation of gluten sensitivity in relation to neurological illnesses reports that, "Incomplete elimination of gluten from the diet may be enough to abolish gastrointestinal symptoms with recovery of the small bowel mucosa but is insufficient to arrest the state of heightened immunological responsiveness resulting in neuronal injury" (10). So, when it comes to even tiny amounts of gluten, they may be enough to perpetuate gluten induced neurological illnesses. There may also an agent in the environment that is causing a cross reaction. This area really needs more investigation, as baby boomers threaten alarmingly increased rates of all forms of dementia. We already know that people with celiac disease are at much greater risk of developing neurological diseases than the general population (13). These ailments range from headaches to learning disabilities to movement disorders to tic disorders, to seizures, to sensory disorders (4) and many who have non-celiac gluten sensitivity also experience a high rate of neurological disease (3). Does that also mean that young athletes with celiac disease will take longer to recover from head injuries? Does it also mean, given the slow acceptance of gluten as a factor in many common neurological illnesses (11) that people like my former high school flame will never be told about the neuro-protective benefits of a gluten-free diet or a ketogenic diet? Surely, resistance to the well established data showing neurological manifestations of gluten sensitivity as a scientific fact (12) is more emotional than rational. A gluten-free diet and/or a ketogenic diet should be offered to those people regardless of whether their neurologist is either resistant to, or not staying current with, his/her professional literature. But they cannot offer what they do not know or have developed some bias against. Dr. David Perlmutter has done an excellent job of getting the word out to the general public, with his recent book titled Grain Brain, but there is much more work to do. People who are gluten sensitive, and are therefore at greater risk of developing neurological disease, might be well advised to look carefully at the benefits of a high fat, ketogenic diet, and the benefits of supplementing with medium chain triglycerides and Omega 3 fatty acids (14). Equally, they might be well advised to avoid the pro-inflammatory omega 6 and omega 9 fatty acids, as well as limiting the amounts of polyunsaturated fats they eat, which are also pro-inflammatory 14). I find that I feel my best when I am in mild, diet-induced ketosis (about 15 mg/dl as measured in morning urine, with Ketostix, which are inexpensive and available at most drug stores). There are a number of good books that explore the fine points of a high fat, ketogenic diet. These include The Art and Science of Low Carbohydrate Living by Volek and Phinney, The Ketogenic Diet by Lyle McDonald, and many others. Finally, when considering a gluten-free diet for neurological ailments, it is important to recognize that 20 parts per million may be far too much gluten to consume. The maximum threshold to qualify as gluten-free under the United Nations Codex Alimentarius Commission and many other regulatory agencies, including the FDA, is 20 parts per million. Without further research, especially in the field of neurology and gluten sensitivity, we will never know what, if any, levels of gluten are safe to consume. Regardless of the nature of your neurological ailment, whether it is Parkinson's disease, or seizures, or multiple sclerosis, or amyotrophic lateral sclerosis, or brain cancer, or almost any other kind of cancer (15), or even if you are just slow recovering from a neurological injury, the positive results of dietary interventions might offer you a whole new lease on life. Sources: http://www.medscape.com/viewarticle/770593 Currie S, Hadjivassiliou M, Clark MJ, Sanders DS, Wilkinson ID, Griffiths PD, Hoggard N. Should we be ‘nervous' about coeliac disease? Brain abnormalities in patients with coeliac disease referred for neurological opinion. J Neurol Neurosurg Psychiatry. 2012 Dec;83(12):1216-21. Matheson NA. Letter: Food faddism. Am J Clin Nutr. 1975 Oct;28(10):1083. Zelnik N, Pacht A, Obeid R, Lerner A. Range of neurologic disorders in patients with celiac disease. Pediatrics. 2004 Jun;113(6):1672-6. Brown KJ, Jewells V, Herfarth H, Castillo M, White matter lesions suggestive of amyotrophic lateral sclerosis attributed to celiac disease. AJNR Am J Neuroradiol. 2010 May;31(5):880-1 Batur-Caglayan HZ, Irkec C, Yildirim-Capraz I, Atalay-Akyurek N, Dumlu S. A case of multiple sclerosis and celiac disease. Case Rep Neurol Med. 2013;2013:576921. Vörös P, Sziksz E, Himer L, Onody A, Pap D, Frivolt K, Szebeni B, Lippai R, GyÅ‘rffy H, Fekete A, Brandt F, Molnár K, Veres G, Arató A, Tulassay T, Vannay A. Expression of PARK7 is increased in celiac disease. Virchows Arch. 2013 Sep;463(3):401-8. Hadjivassiliou M, Grünewald RA, Lawden M, Davies-Jones GA, Powell T, Smith CM. Headache and CNS white matter abnormalities associated with gluten sensitivity. Neurology. 2001 Feb 13;56(3):385-8. Hadjivassiliou M, Sanders DS, Grünewald RA, Woodroofe N, Boscolo S, Aeschlimann D. Gluten sensitivity: from gut to brain. Lancet Neurol. 2010 Mar;9(3):318-30 Hadjivassiliou M, Grünewald RA, Davies-Jones GA. Gluten sensitivity as a neurological illness. J Neurol Neurosurg Psychiatry. 2002 May;72(5):560-3. Tengah P, AJ Wills. Questions and Answers About the Neurology of Gluten Sensitivity. Pract Neurol 2003;3:354-357 Hadjivassiliou M, Grünewald R. The Neurology of Gluten Sensitivity: science Vs conviction. Pract Neurol 2004;3:4, 124-126. Hadjivassiliou M, Grünewald R. Gluten sensitivity as a neurological illness. Neurol Neurosurg Psychiatry. May 2002; 72(5): 560–563. http://www.omegascience.org/product_ingredients/coconut_oil.aspx Paoli A, Rubini A, Volek JS, Grimaldi KA. Beyond weight loss: a review of the therapeutic uses of very-low-carbohydrate (ketogenic) diets. Eur J Clin Nutr. 2013 Aug;67(8):789-96
Jefferson Adams posted an article in Epilepsy and Celiac DiseaseCeliac.com 10/03/2016 - It's hard for researchers to figure out the exact rate of celiac disease, in part because the disease so often presents a range of atypical symptoms. Most people with celiac disease suffer from classic gastrointestinal symptoms, but many patients may also be asymptomatic or have extra intestinal symptoms. A team of researchers recently set out to assess celiac disease rates in patients with epilepsy, align with determining the effect of a gluten-free diet on seizure control in these patients. The research team included Homayoon Bashiri, Darioush Afshari, Nosrat Babaei, and Mohammad R. Ghadami. They are variously affiliated with the Department of Internal Medicine, and the Sleep Disorders Research Center at Kermanshah University of Medical Sciences in Kermanshah, Iran. For their study, the team assessed patients with epilepsy in Imam Reza and Farabi Hospitals, Kermanshah, Iran. The team first screened patients screened based on results of immunoglobulin A antiendomysial (IgA) antibodies. In patients with positive screens for IgA antibodies, the team took 2–3 endoscopic small bowel biopsies from the distal duodenum to confirm celiac-related changes. People with celiac disease received a gluten-free diet for 5 months, during which time the researchers regularly recorded patient seizure activity. Of the 113 patients with epilepsy, the team diagnosed seven patients (6%) with celiac disease. After 5 months of instituting a gluten-free diet, 6 patients had their seizures completely under control, and were able to discontinue anti-epileptic drugs. In one patient, dosage of anticonvulsant drugs was cut in half, seizures were also controlled. These results showed that about 6% of epileptic patients were positive for celiac disease, and that these patients see significant improvement in seizure control on a gluten-free diet. Source: Adv Clin Exp Med 2016, 25, 4, 751–754