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Found 20 results

  1. Hi, i'm a 29 y/o male and basically to try and keep it as short as possible. For the last, i'd say 3-1/2 years i've had strange symptoms that don't fit to any definite diagnosis. I've had MRI'S, X-rays, EMG's, all the blood works done plus countless visits to neurologists and still I have no diagnosis and they're scratching their heads. It's been a nightmare stuck in limbo. I will list a few of my symptoms as i'm just wondering if anyone else can relate. I just want to say autoimmune runs in my family. Both my first cousin and aunt have Crohn's disease. It all started with severe burning in my right foot, then it spread to my left almost immediately and them started progressing upwards. When it got to my calfs, it started in my hands, only it's itching instead of burning. The burning an itching is still present, but for the last 2 years, my muscles (where the burning is) have been twitching and i've lost muscle mass, mostly in my feet, calves and hands, and shoulders, but it's progressing. I've had all the tests I can think of for ALS, MS, etc... I have a lot of sensory issues that have spread through my body, but no numbness, as well as ocular migraines which I get from time to time and a jagged line across my sight appears and then my vision goes in one eye. I suffer with depression and anxiety and all seems to have been triggered around the same time it's all started. Also I have noticed a mass of fruits I all of a sudden can't eat due to sensitivities that I never used to have. So i'll just bullet point symptoms, and I would really be appreciative if someone could give me their opinion or if someone has similar symptoms. Thank you in advance all :) *muscle wasting *muscle twitching/fasciculation's *chronic fatigue *unsteady walking & off balance *unable to empty bladder fully *constipation *itching *brain fog *irritability *ocular migraines *depression & anxiety *sudden food allergies *restless legs
  2. I was tested (last year 2016) for all of my sensitivities. Casein and Gluten obviously were heavy in my results. Before I got tested, I kind of suspected, because my mom tested positive for Celiac Disease. Before I went gluten free / dairy free, I was having a ton of symptoms, ranging from canker sores, trouble breathing, feeling like I was about to choke on every bite of food, feeling like I was about to swallow my tongue, seborrhoeic dermatitis (especially in mustache area), dry skin, numbness in extremities like legs, hands, arms and feet, chills, extreme sickness, losing weight, insomnia, panic attacks, anxiety attacks, diarrhea, constant acid reflux / GERD, hiccups, etc.. I mean I had the whole gamut of issues. But this one issue really is the worst for me and I always wonder if other people with Celiac or Casein intolerance have this too. Whenever I get glutened or ingest casein, I'll be very paranoid and fearful, and it usually begins as I'm waking up from sleep. I'll have what's known as a hypnopompic hallucination and it's typically as I'm coming out of sleep (half asleep / half awake), I'll have a deep epiphany about something and it'll feel like God is judging me or God has shown me something that I don't want to see. I no longer subscribe to any religious faiths, though at one time I was an extreme Christian. But I wake up shaking, with my heart beating fast and feel very terrified for the rest of the day. I'll be obsessing over what I felt like God was showing me in that epiphany, like I'm about to go to hell or something. After going gluten free and dairy free, I no longer have these issues, which proved to me that they weren't a real 'spiritual phenomena.' I have been gluten free for almost a year now and decided to try eating a GLUTEN FREE pizza two days ago. Nothing happened the night I ate the pizza, but this morning (2 days later), I got another hypnopompic hallucination dealing with spiritual things again. So now I know that's the culprit. I was wondering if others here have had anything similar happen? They wake up thinking God is speaking to them or showing them something or they see dead people or any spooky s$#& like that.
  3. 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.
  4. Celiac.com 06/12/2017 - Previously, Transcranial Magnetic Stimulation in de novo celiac disease patients has signaled an imbalance in the excitability of cortical facilitatory and inhibitory circuits. Researchers have reported that, after about of 16 months on a gluten-free diet, patients experience a global increase of cortical excitability, which suggests some kind of compensation for disease progression, likely mediated by glutamate. To better assess these finding, a team of researchers recently conducted cross-sectional evaluation of the changes in cortical excitability to TMS after a much longer gluten-free diet. The research team included M. Pennisi, G. Lanza, M. Cantone, R. Ricceri, R. Ferri, C.C. D’Agate, G. Pennisi, V. Di Lazzaro, and R. Bella. They are variously affiliated with the Spinal Unit, Emergency Hospital "Cannizzaro", Catania, Italy, the Department of Neurology IC, I.R.C.C.S. "Oasi Maria SS.", Troina, Enna, Italy, the Department of Medical and Surgical Sciences and Advanced Technologies, Section of Neurosciences, University of Catania, Catania, Italy, the Gastroenterology and Endoscopy Unit, University of Catania, Catania, Italy, the Department "Specialità Medico-Chirurgiche,” University of Catania, Catania, Italy, and the Institute of Neurology, Campus Bio-Medico University, Rome, Italy. For their study, the team enrolled twenty patients who had followed an adequate gluten-free diet for about 8.35 years, on average. They then compared the results with twenty de novo patients, and twenty more healthy controls. The team measured Transcranial Magnetic Stimulation, recorded from the first dorsal interosseous muscle of the dominant hand, as follows: resting motor threshold, cortical silent period, motor evoked potentials, central motor conduction time, mean short-latency intracortical inhibition and intracortical facilitation. De novo patients showed a shorter cortical silent period, while responses for gluten-free diet participants were similar to controls. Regardless of diet, all celiac patients showed a significantly smaller amplitude of motor response than did control subjects, Again, without regard to diet, all celiac patients showed a statistically significant decrease of mean short-latency intracortical inhibition and enhancement of intracortical facilitation with respect to controls. The team also observed that gluten-free celiac patients showed more intracortical facilitation compared to non-gluten-free patients. Neurological examination and celiac disease-related antibodies were both negative. This study showed that a gluten-free diet helps to mitigate the electrocortical changes associated with celiac disease. Even so, in many patients, an intracortical synaptic dysfunction, mostly involving excitatory and inhibitory interneurons within the motor cortex, may persist. The calls for further investigation into the clinical significance of subtle neurophysiological changes in celiac disease. Source: PLoS One. 2017 May 10;12(5):e0177560. doi: 10.1371/journal.pone.0177560. eCollection 2017.
  5. Pediatrics 2004;113:1672-1676. Celiac.com 07/12/2004 – According to Dr. Nathaniel Zelnik and colleagues from the Technion-Israel Institute of Technology, in Haifa, Israel, the spectrum of neurological disorders among those with celiac disease are greater than previously thought. The researchers studied 111 responses to questionnaires that probed for the presence of neurological disorders and symptoms, and reviewed the respondents medical records. Those who reported neurological symptoms underwent neurological examination and brain imaging or electroencephalogram, and the results were compared with that of 211 matched controls. The researchers found that 57 out of 111 (51.4%) of those with celiac disease also developed neurological disorders, compared with only 42 (19.9%) control patients. The neurological manifestations included hypotonia, developmental delay, learning disorders and ADHD, headache, and cerebellar ataxia. Epileptic disorders were also slightly more common among patients with celiac disease. The prevalence of tic disorders between the two groups did not differ. The effects of a gluten-free diet did differ among the various neurological disorders found by the researchers. Dr. Zelnik concludes that the therapeutic benefit of the gluten-free diet was demonstrated only in patients with transient infantile hypotonia and migraine headache.
  6. Celiac.com 12/06/2016 - Neurological problems are a very common effect of gluten intolerance. Whether you have celiac disease or gluten sensitivity, there is research showing that gluten can cause nervous system problems in affected individuals. What kind of problems? When it comes to the nervous system, symptoms run the gamut from depression to schizophrenia, from migraines to brain fog, and from seizures to numbness and pain. I want to share more information with you about a particular type of nervous system ailment called peripheral neuropathy. The name basically means damage to the nerves of the extremities (arms and legs) that typically manifests in numbness and pins and needles-type pain that all of us have experienced at one time or another if we sat on our feet too long or fell asleep in a weird position and had a hand ‘go to sleep'. While these latter type incidents are normal, having such symptoms occur when no pressure is being put on the nerve is abnormal. Not only is it uncomfortable to have such sensations, but when truly numb, accidents from tripping or burning oneself can occur due to not having adequate sensation. I think it is interesting to note that the most common occurrence of peripheral neuropathy is seen in type I diabetes, an autoimmune disease. Celiac is also an autoimmune disease and according to the University of Chicago's Center for Peripheral Neuropathy, 10% of those diagnosed with celiac disease have a neurological problem, and peripheral neuropathy is quite common. Taking it a step further, we know that gluten creates a leaky gut and we know that a leaky gut is associated with autoimmune disease, through several wonderful studies brought to us by Dr. Alessio Fasano and his team. Therefore, seeing a connection between gluten and peripheral neuropathy is not unexpected based on research. Further, despite a dearth, or scarcity, of research on gluten sensitivity, doctors currently engaged in such research cite peripheral neuropathy as one of the most common symptoms associated with gluten sensitivity. In fact neurological symptoms are frequently associated with gluten sensitivity before any digestive symptoms ever develop. And in some cases, the nervous system disorders are present with no digestive disturbances. A lack of any digestive symptoms is perhaps one of many reasons why these individuals' gluten sensitivity is missed by their doctors. When it comes to comparing gluten sensitivity to celiac disease, according to Dr Fasano, 30% of the patients he diagnoses with gluten sensitivity suffer a neurological ailment, a much higher percentage than that associated with celiac disease. How Do You Know if You Have Peripheral Neuropathy? The symptoms of peripheral neuropathy are numbness, a feeling of hot/cold or a pins and needles feeling that tends to start at the ends of your body's long nerves, meaning your feet and hands, before moving upwards. The symptoms can be in legs and/or arms, right side and/or left. Certainly, considering that type 1 diabetes is the most common cause of peripheral neuropathy, with an estimated 50% suffering some type of nerve damage, that would be the first thing to rule out. What Should You Do? If you have these symptoms and your doctor has ruled out diabetes and any other obvious sources of the problem (including any drugs you may be taking that create neuropathy as side effects), you may fit into the category of "idiopathic neuropathy". This means that you have the problem but the reason is unknown. Or is it? Let's look at the result of a study where researchers worked with more than 200 individuals with neuropathy, 140 of whom fell within the ‘idiopathic' category. These smart doctors tested those 140 people for antibodies to gluten, specifically utilizing the anti-gliadin antibody test – AGA-IgA and AGA-IgG. This blood test is a general blood test that is not specific to celiac disease or gluten sensitivity, but shows that the body's immune system is reacting negatively to these proteins in gluten called gliadin. Of those tested, 34% were positive to one or both tests, compared to 12% of the general population. Interestingly, a full 9% of those tested in the ‘idiopathic' group actually had celiac disease, compared to 1% of the general population. And perhaps even more interesting, 80% of that same idiopathic group had the genes for celiac disease, either HLA-DQ2 or HLA-DQ8. 80%!! In the normal population that number is about 40%. Our takeaway message is that peripheral neuropathy has a rather high correlation to immune reaction to gluten – be it celiac disease or gluten sensitivity. Therefore anyone you know who suffers with such symptoms absolutely should be checked for gluten intolerance. Regaining one's strength and correcting nervous system abnormalities is well worth the change in diet when gluten is the cause. Such cases have been described in the literature where the only treatment that led to success was a gluten-free diet. So many diseases and symptoms can be prevented and reversed by discovering their true underlying root cause and for many of those ailments it is gluten that is the culprit. Don't continue suffering nor let you friends and family members suffer. Find out why the symptom is there rather than just masking it with a drug. If you need assistance, consider calling us for a free health analysis – call 408-733-0400. Our destination clinic treats patients from across the country and internationally. You don't need to live local to us to receive assistance. We are here to help! To your good health, References: Hadjivassiliou M. et al. Neuropathy associated with gluten sensitivity. Journal of Neurology, Neurosurgery, and Psychiatry. 2006 Nov;77(11):1262-6. Rigamonti A. et al. Celiac disease presenting with motor neuropathy: effect of gluten-free diet. Muscle & Nerve. 2007 May;35(5):675-7. University of Chicago Center for Peripheral Neuropathy. Types of Peripheral Neuropathy - Inflammatory - Celiac Disease.
  7. Hi all. I was just recently diagnosed with celiac disease after having minor GI issues. However, I suffer from muscle numbness and weakness. It usually occurs in my left arm, leg and left side of my face. Sometimes, I even think my speech is slurred. Did anyone experienced this? Thank you
  8. Celiac.com 02/01/2016 - Among celiac researchers, there's been a good deal of professional curiosity about the clinical and immunological relevance of anti-neuronal antibodies in celiac disease with neurological manifestations. At present, doctors don't know very much about the clinical and immunological features in celiac disease patients with neurological problems, and many of them want to know more. Researchers estimate that about 10% of celiac disease patients have neurological issues, with the majority of those suffering from anti-neuronal antibodies (NA) to central nervous system (CNS) and/or anti-neuronal antibodies to the enteric nervous system (ENS). With that in mind, the question of the importance of such antibodies in celiac patients with neurological problems becomes important. To get a better picture of the issue, a team of researchers in Italy recently set out to assess rates of anti-neuronal antibodies, and to assess their correlation with neurological disorders and bowel habits in people with celiac disease. The research team included G. Caio, R. De Giorgio, A.Venturi, F. Giancola, R. Latorre E. Boschetti, M. Serra, E. Ruggeri, and U.Volta. They are all associated with the Department of Medical and Surgical Sciences, University of Bologna and St. Orsola-Malpighi Hospital, Bologna, Italy. For their study, the team investigated anti-neuronal antibodies to central nervous system and enteric nervous system in 106 celiac disease patients and in 60 controls with autoimmune disorders, using indirect immunofluorescence on rat and/or primate cerebellar cortex and intestinal (small and large bowel) sections. Their results showed that 21% of celiac patients were positive for IgG NA to central nervous system (titer 1:50 - 1:400); nearly half of those patients showed neurological dysfunction, compared with just 8% without. (P< 0.0001). Of the 26 celiacs (24%) with IgG anti-neuronal antibodies to enteric nervous system, 11 out of 12 with an antibody titer greater than 1:200 had severe constipation. Only one patient with cerebellar ataxia and intestinal sub-occlusion was positive for anti-neuronal antibodies to central nervous system and enteric nervous system. Anti-neuronal antibodies to central nervous system and enteric nervous system were found in 7% and 5% of controls, respectively. These results confirm that the presence of anti-neuronal antibodies to central nervous system can be regarded as a marker of neurological manifestations for people with celiac disease. High titer anti-neuronal antibodies to enteric nervous system are associated with severe constipation. The presence of anti-neuronal antibodies to central nervous system and enteric nervous system is a big red flag for an immune-mediated disease path that leads to central neural impairment, and gut dysfunction with associated constipation. Source: Gastroenterol Hepatol Bed Bench. 2015 Spring;8(2):146-52.
  9. Celiac.com 02/08/2016 - When doctors talk about non-celiac gluten sensitivity (NCGS), they are usually talking about people who have gastrointestinal symptoms without enteropathy, and for whom a gluten-free diet (GFD) provides some relief of symptoms. However, doctors don't currently know very much about the pathophysiology of NCGS, its connection to neurological manifestations, or if it is in any way different from the manifestations seen in patients celiac disease. To address this issue, a team of researchers recently set out to take a closer look at the clinical and immunological characteristics of patients presenting with neurological manifestations with celiac disease and those with NCGS. The research team included Marios Hadjivassiliou, Dasappaiah G Rao, Richard A Grìnewald, Daniel P Aeschlimann, Ptolemaios G Sarrigiannis, Nigel Hoggard, Pascale Aeschlimann, Peter D Mooney and David S Sanders. The team compared clinical, neurophysiological, and imaging data from celiac disease patients and NCGS patients who presented with neurological dysfunction, and who had regular assessment and follow up over a 20-year period. The study included 562 out of total 700 patients. The team excluded patients who had no bowel biopsy to confirm celiac disease, no HLA type available, and/or failed to adhere to GFD. All patients presented with neurological dysfunction and had circulating anti-gliadin antibodies. The most common neurological problems were cerebellar ataxia, peripheral neuropathy, and encephalopathy. Out of 562 patients, 228 (41%) had evidence of enteropathy (Group 1, celiac disease) and 334 (59%) did not (Group 2, NCGS). There was a greater proportion of patients with encephalopathy in Group 1 and with a greater proportion of neuropathy in Group 2. The severity of ataxia was about the same between the two groups. Patients in Group 1 showed more severe neuropathy. Patients from both groups responded well to a gluten-free diet. Anti-tissue transglutaminase (TG2) antibodies were found in 91% of patients in Group 1 and in 29% of patients in Group 2. Researchers saw no difference between those patients in Group 2 with HLA-DQ2/DQ8 and those without, or between those with positive TG2 compared to those with negative TG2 antibodies. Both groups showed similar serological positivity for TG6 antibodies, at 67% and 60%, respectively. The results of this study show that patients with celiac disease and NCGS have similar neurological manifestations, which respond well to a gluten-free diet. This suggests that the two conditions share common pathophysiological mechanisms. Source: The American Journal of Gastroenterology , (2 February 2016). doi:10.1038/ajg.2015.434
  10. Celiac.com 09/17/2012 - Many aspects of celiac disease simply have not been well studied, so they remain poorly understood. For example, researchers have not done enough study on people with celiac disease to understand if they show any readily available serological markers of neurological disease. To better understand this issue, a research team recently assessed the amount of brain abnormality in patients with celiac disease, along with looking into MR imaging sequences as biomarkers for neurological dysfunction. The study team included S. Currie, M. Hadjivassiliou, M.J. Clark, D.S. Sanders, I.D. Wilkinson, P.D. Griffiths, and N. Hoggard, of the Academic Unit of Radiology at University of Sheffield, Royal Hallamshire Hospital, in Sheffield, UK. For their study, they conducted a retrospective examination of a consecutive group of 33 patients with biopsy proven celiac disease, who had been referred for neurological opinion. The group ranged in age from 19 to 64 years old, with an average of 44±13 years. Researchers divided the group into subgroups based on their main neurological complaints of balance disturbance, headache and sensory loss. They used 3T MR to evaluate variations in brain grey matter density, cerebellar volume, cerebellar neurochemistry and white matter abnormalities (WMAs) between celiac patients and control subjects. The results showed that the celiac patients had a significantly lower cerebellar volume than did control subjects. Celiac patients had 6.9±0.7% of total intracranial volume, compared with 7.4±0.9% for control subjects (p<0.05). Celiac patients also showed significantly less grey matter density in multiple brain regions, both above and below the tentorium cerebelli, compared with the control subjects (p<0.05). The data showed that 12 (36%) patients demonstrated WMAs unexpected for the patient's age, with the highest incidence occurring in the headache subgroup. This group of patients averaged nearly double the number of WMAs per MR imaging session than the subgroup with balance disturbance, and six times more than the subgroup with sensory loss. The MR images of celiac patients who have neurological symptoms show significant brain abnormality on MR imaging, which means that MR imaging may serve as valuable biomarkers of disease in celiac patients. Source: J Neurol Neurosurg Psychiatry. 2012 Aug 20.
  11. Hi Everyone, I am new to these boards. I have been reading though and the information posted by others has been very helpful. Thank you to all of you but especially to Ravenwoodglass. Five years ago, one of my sons was diagnosed with type 1 diabetes. While he was in the hospital, he was screened for celiac, and the blood tests came back positive. He ended up with a celiac diagnosis too, and it became apparent he could produce more of his own insulin when adhering strictly to the gluten-free diet. He experienced a prolonged t1d "honeymoon" which did not end until he had been in college for a year. While away at school he has had many more gluten accidents which I am sure was a contributing factor to his now need for more injected insulin. One funny detail is the medical doctors insisted that my son would need less insulin when glutened (as food won't be absorbed properly for a little while afterwards). But for my son, it was always the opposite. During his t1d "honeymoon period" he still made much insulin -- his honeymoon lasted an unprecedented three years (as compared to typical, six months for a newly diagnosed t1d patient). My son's basal insulin need would at least double after a glutening. It would take days for his body's own residual insulin production to return to normal. (I haven't bothered to explain what a t1d honeymoon period is, as it probably is of no interest to people who do not have t1d in their family -- and those who do have it in the family likely know what the honeymoon is -- hope that's ok). In 2011 I did a gluten challenge and had great difficulty with it. I had gone gluten free a year earlier to see what the challenges were, so as to help my son with his diet. Three weeks into the gluten-free diet I had noticed great improvements in how I felt. On the challenge, I could not consume more than a tiny amount of gluten (half a saltine) - I would then have severe dizziness and watery D. Foolishly, I continued with the challenge, going on an off gluten that month (going off when I had to drive the next day). The dizziness was far too severe to allow me to drive, and the D kept me near a bathroom. My antibodies had tested negative (not surprising as I had been gluten-free for the year before being tested). My endoscopy was negative for celiac, and I was pronounced non-celiac, and just presumed gluten sensitive by my reaction to gluten (the dizziness and D). Long story short - the four years since then have been bad news. I had the endoscopy in Aug 2011and started to recover from it, but then started getting worse again in Oct 2011. It took me about 15 months to figure out I had become more sensitive to CC. I stopped eating diner fried eggs (for example) and the persistent D went away. But neurological problems continued getting worse. Next thing I was getting worked up for possible MS, and had abnormal brain and cervical spine MRIs. But oddly, I was presenting with a relapsing remitting pattern in terms of symptoms, while the images looked more like PPMS -- few lesions, but in very bad locations. Lesions to cervical spine, brainstem, cerebellum. Also, my vitamin levels were dropping, especially B12 and zinc. Actually, the drop in B12 happened earlier (around the time the damage to spinal cord was detected). More recently I was diagnosed as deficient in zinc. The detection of the zinc deficiency is helpful as I had also developed new immune system problems - low lymphocyte counts, low celiac disease cell counts -- I was tested for HIV eighteen months ago (when immune cell counts became abnormal and I was getting repeated shingles, odd for someone my age). I was HIV negative (no surprise there). So it seems zinc deficiency interferes with production of immune system blood cells. I am hoping the white blood cells will normalize with zinc supplementation. Of course it took forever to discover the zinc deficiency, since I have "no risk factors" for it -- since I was officially deemed celiac disease negative with my negative endoscopy (which I should add was done properly, according to all accepted rules, by a top expert in celiac disease). I had a neurologist who did not bother with spinal tap, and actually tried to conceal from me some of the abnormal findings (I think he thought it was untreatable PPMS and I was better off not knowing, and he might have figured my neuro abnormalities were still mild enough he could get away with delaying the "bad news"). But I was having horrible flares and finally consulted a different neuro, who did the spinal tap. NEGATIVE for o-bands, negative for increased igg index 0-- and slightly LOW rather than high spinal fluid protein level. I also recently discovered there were already periventricular white matter hyperintensities on a brain MRI done in 2003. These were not mentioned in the radiology report from 2003 (ridiculous). I have none of the typical "Dawson's fingers" that one sees with MS. Mine are smaller and milder. (That too would be consistent with PPMS, less damage visible on brain MRI -- unless, it isn't MS at all, which might be suggested by the spinal tap done a month ago which was negative for all signs of MS). So given the chronology and the fact I took ill especially immediately following the gluten challenge, and because I realized I am very sensitive to CC (cross contamination) -- about three weeks ago I tightened up the gluten-free diet, eliminating all grains (as I have heard grains, even gluten-free ones, can have miniscule contamination with gluten). I am doing so much better. No dizzy spells since eliminating all grains and other processed foods! I have lots of damage, numbness in legs, feet, and especially toes, and some in hands and on my face (inside my mouth too, and I have had swallowing problems). I have some hearing loss too which I think is a result of damage near the acoustic nerve, in my cerebellum. I lost my acoustic reflexes (more evidence of "dings" in brainstem). But I will stick to my new, very strict diet, and will see how it goes. Since going on the very clean diet (for presumed super sensitivity to gluten),I have had some new mild pain in formerly totally numb toes. I seem to be regaining some more sensation on my face. And I have had no vertigo, and no light headeness! I have never had a positive blood test for TTG or anything like that, but two of my three sons tested positive (DGP IGG, TTG). I did an enterolab test for gliadin, and the value actually tripled between the time I was on the gluten challenge (in 2011) and summer of 2013, when I was already showing significant signs and symptoms of MS. In 2013 I had been on a gluten-free diet since my gluten challenge ended in summer 2011, but the Enterolab report commented that there likely were hidden sources of gluten in my diet as I was still producing the gliadin antibodies and the level was so much higher. I can't be certain the cleaner diet is responsible for me feeling better these last 3 weeks -- since my symptoms have had a waxing and waning quality. However, I am going to give it a serious trial, and for at least the next year I will not do anything that could be risky, in terms of diet (I will continue to avoid processed food and grains). I appreciate all the helpful advice posted on this site. Any advice directed my way would be most welcome. I will keep you posted on my progress. Thanks again to everyone who has posted helpful info in the past. Cheers, Hannah
  12. Celiac.com 09/02/2008 - Thanks to a team of researchers based in Great Britain, doctors may soon have a powerful new diagnostic tool to help them in their efforts to combat the damage caused by celiac disease. Their new discovery concerns people with celiac disease who may also develop neurological disorders. The research team was made up of Marios Hadjivassiliou, MD, Pascale Aeschlimann, BSc, Alexander Strigun, MSc, David Sanders, MD, Nicola Woodroofe, PhD, and Daniel Aeschlimann, PhD. The team recently investigated the nature of gluten sensitivity by isolating a unique neuronal transglutaminase enzyme and examining whether it is the focus of the immune response in celiac patients with neurological dysfunction. About one in ten people with celiac disease also suffer from associated neurological disorders, mainly from a condition involving the cerebellum called gluten ataxia, and another involving the peripheral nerves called gluten neuropathy. For many people celiacs with gluten ataxia, their neurological problems are their sole symptom. Only about 1 out of 3 people with gluten ataxia and celiac disease will show classic intestinal damage when given a biopsy. This can make proper diagnosis difficult for them. Also, there’s presently no reliable way to predict which people with gluten intolerance might develop neurological problems. Most people familiar with celiac disease know that gastrointestinal discomfort is one of the most common symptoms. The antibody most commonly associated with such discomfort is called anti-transglutaminase 2 IgA. This is one of the main antibodies that doctors commonly look for when evaluating possible cases of celiac disease. Anti-TG2 antibodies are pretty much exclusive to people with celiac disease, and are associated with both untreated clinically symptomatic celiac disease, and with the latent form of the disease. This makes the presence of anti-TG2 antibodies an excellent diagnostic indicator of celiac disease. Anti-TG2, however, may not be the best indicator in every case of celiac disease. One example is in cases of dermatitis herpetiformis, which is an external skin reaction to gluten. Most people with dermatitis herpetiformis have a persistent itchy skin rash, and while the majority of cases show intestinal damage with a biopsy, patients rarely experience intestinal discomfort associated with classic celiac disease.1 There is also reliable data that point to a role that anti-TG3 plays in cases of dermatitis herpetiformis.2 This indicates that the nature of a given individual’s immune response may determine how celiac disease manifests itself within that individual. That hypothesis seems to be born out by the research team’s discovery that another antibody, called anti-transglutaminase 6 IgG and IgA response is widespread in gluten ataxia, completely outside of any intestinal symptoms. These antibodies are not found in healthy control patients or in patients with neurological conditions that had clear genetic causes. Both groups showed no anti-TG6 in their blood samples. The research team took blood samples from 20 patients with newly diagnosed celiac disease before the patients began a gluten-free diet. The team confirmed the presence of celiac disease with duodenal biopsy and made sure the patients had no patients had no evidence of neurological problems. The team then took blood samples from 34 patients with Gluten Ataxia, which they defined as otherwise sporadic idiopathic ataxia with positive IgG and/or IgA anti-gliadin antibodies. The also took samples from another17 patients with peripheral idiopathic neuropathy (PN) who tested positive for anti-gliadin antibodies. These 17 patients tested negative for anti-MAG and anti-GM1 and had no evidence of intestinal damage on biopsy. The team used three separate control groups. The first was a group with genetic ataxia, which included 18 patients with ataxia that was genetic in nature, or with a clear family history of autosomal dominant ataxia. The second control group of 14 patients included cases of diseases that were immune-mediated, but not tied to gluten-sensitivity (such as vasculitis, viral cerebellitis, paraneoplastic ataxia, GAD ataxia). Lastly, the team used blood samples from 19 healthy individuals as another control group. The research team used recombinant human transglutaminases to develop ELISA and inhibition assays with which they measured blood samples of patients with gluten sensitive gastrointestinal and neurological disorders, along with several control groups that included unrelated inherited or immune conditions, for the presence and specificity of autoantibodies. The team found that the blood samples of patients with celiac disease and gluten ataxia contain IgA and IgG class antibodies to TG6 that are not present in the healthy control patients or in patients with neurological conditions that had clear genetic causes. At present, doctors test for celiac disease by checking the HLA type, and looking for the presence of anti-gliadin and anti-transglutaminase 2 antibodies. The results of this study indicate that the presence of anti-transglutaminase 6 can help to pinpoint patients with gluten sensitivity that may be at risk of developing neurological disease. Forthcoming: Annals of Neurology Footnotes: 1. Marks J, Shuster S, Watson AJ. Small bowel changes in dermatitis herpetiformis. Lancet 1966; 2:1280-1282. 2. Sárdy M, Kárpáti S, Merkl B, Paulsson M, and Smyth N. Epidermal transglutaminase (TGase3) is the autoantigen of Dermatitis Herpetiformis. J Exp Med 2002; 195:747-757.
  13. 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.
  14. Hello all, I have to say up-front a big thank you to all of you dedicated and sincere people from whom I have learned a lot over the past few weeks. I decided it is time to share my story and to ask what you may think about where I might go from here. Gluten was not even on my radar a few months ago, but now learning all I can about celiac disease, NCGI and a gluten-free diet has become a major focus of my life. (Trying to make a long story short, but apologize for lengh) I am 59 years old, have been chronically constipated since an infant and as long as I can remember have suffered bloating, gas, pain, and severe abdominal distension especially after eating. As a child underwent various doctor examinations and barium x-rays, but nothing was discovered about the cause. Doctors made some dietary recommendations, gave me all sorts of nasty potions which never helped, and it just became my "normal' as far as I knew. I also suffered from chronic ear infections (always left ear), sinus infections, and sore throats. About 15 years ago I also began getting migraine headaches (left side) which always began with more severe ear pain, inflammation in head and face, and severe pain behind eyes, and had them an average of 1-3 times per week. I was always on the lookout for what foods might trigger the migraines, and eliminating something temporarily from my diet to see if it had an effect. All to no avail until about 5 years ago when I stumbled upon corn syrup as a culprit. Since eliminating that (and also limiting consumption of corn in general) the severity of the migraines lessened somewhat, but not the frequency or the manner in which they appeared. So, there was clearly something else. I have also avoided milk products for most of my adult life, but was not convinced that it was a lactose mediated reaction (taking lactase did not seem to help the greater abdominal discomfort or headaches after dairy consumption.). I also sub-consciously limited consumption of grain products most of the time, but did not avoid them completely. This last summer I had a long commute and it was easier to bring lunches and snacks consisting of sandwiches, crackers, and wheat containing snack foods in addition to fruits, fish, etc.. This was way more gluten than I usually consumed, and I started having strange things happen to me. I stumbled and had lots of falls, including one where I cracked a rib. I thought I was just walking too fast and slowed down. I noticed running into doorframes and bruising my arms. I am very near-sighted, so just thought my glasses needed updating. I burned myself a few times because i would be cooking and have a strange, not painful sensation on a finger, until it finally started to hurt and I realized I was touching a hot pan; or once was pouring boiling water for tea (wihout glasses on) and wondered about the strange sensation of water pouring over my finger, until it finally hurt and realized that I had been pouring the boiling water over my finger. This was disconcerting, but since I was feeling so exhausted all the time, and my head was in a fog, I had no strength to think of seeing a doctor about something that I hoped was just a passing thing. I also realized that every time I would be walking with a friend, I kept bumping into them, even though I tried so hard to walk straight. It was embarrasing. My sinuses were burning, throat was sore, experienced some urinary incontinence (leakage) and feeling like I had a UTI, although with no fever. I was nauseous often and even had bouts of diarrhea in the mornings which made me anxious on the over-an-hour bus ride. My head was constantly hurting and inflammed (was actually swollen, as determined by glasses fitting tighter and hurting face), and the migraines were more frequent. Finallly, I broke out with a carpeting of red rash from my neck to bottom of torso, and petechial rash from thighs to feet. At this point I decided to change what I was eating, and thus cut out the bread and crackers (still not really thinking about gluten), except for 2 slices of bread on Shabbat, once a week. However, since I was also getting cramps and a creepy-crawly sensation in my legs, I thought that I was lacking calcium and started eating yogurt. The rash went away after about 2 weeks, my throat was less sore and the inflammation in head and ear not as intense. I also noticed that on Sunday or Monday (after eating bread on Friday night & Saturday) I would always get my typical migraines. Now, I started thinking gluten. So, after 4 months of once-a-week bread, I stopped all gluten (as far as I knew how to). It was amazing. No migraine for a week and the ear & sinus pain and inflammation in head were greatly lessened. I started looking up gluten sensitivities and realized that I should get tested soon, since I had been off gluten for a week (I didn't know about the effect of the 4 months of "gluten-light"). My doctor discounted what I had to say about my abdominal history because I usually had constipation instead of diarrhea. She had never heard of a link to migraines. I did not mention the neurological issues, because I did not have any idea then that they could be gluten related. To appease me she did order the blood test. It was negative: anti-TTG+DGP (IgA+IgG) 0.61 U/ml (0 - 40) But I did find that I was: vitamin D deficient 22 ng/ml (up from 20 ng/ml after taking 1000 U/day Vit. D supplement for 2 years), vitamin B-12 deficient 282 pg/ml (down from 492 pg/ml 2 years ago) high normal fasting glucose 99 mg/dl (65 - 100) high LDL 138 (60 - 130) high total cholesterol 211 (120 - 200) No other nutrients were tested for, and the high cholesterols were despite my ratios (with HDL and triglyercerides) being really almost ideal. My diet is usually very heart healthy - no oils except for olive oil, high in fruits & veggies, low in sugar, etc. Not overweight and in pretty good shape. The doctor called and said "well, you definitely don't have Celiac". She gave me a referral to a nutritionist to consult on the high chlolesterol and a Rx for vitamin B12, and told to increase the vit D to 1500 U/day (the nutritionist said 2000 & sometimes I take 4000). I am now gluten-free, corn-free, dairy-free for 7 weeks (no processed food except for rice cakes & brown rice cereal). Only one migraine that whole time. Almost free of inflammation in head, ear pain, sinus pain and sore throat. I am not walking into people or door frames, the feeling has come back in my fingers. Unless I have eaten something questionable I have no reflux or nausea, no panic on the long bus ride, much less intestinal gas, no pain, bloating, and distension in abdomen. I am more energetic, my steps feel lighter, and I don't get as winded when walking. Oh and I also have fuzzy new hair growth in a bald spot on my head that started about 4 years ago. I have since learned that my adult daughter, who has always had the same abdominal issues, but no neurological ones, has been diagnosed with Celiac. Other curiosities - Always had infertility issues, with only 2 pregnancies, one was my long-awaited daughter, and, after 12 years, one which ended in miscarriage. Also, was not able to be vaccinated successfully against Hepatitis B. So, the question... I thought I probably have NCGI because of the negative blood test, although my doctor knows nothing of that and looked at me like I was from another planet when I mentioned it. But, my nutritionist thinks that the sensitivity I apparently have to cross-contamination is more indicative of Celiac. I now realize that my very low level of gluten for the months prior to the blood test could have resulted in a negative test, even with Celiac. Can NCGI also cause the neurological symptoms I was experiencing, the nutritional deficiencies, hair loss, the infertility, etc.? Is it adviseable to just continue on a strict gluten-free diet, even though I have no diagnosis to cause the medical system to take the dietary need into account in any future circumstances? Or would it be worth risking further damage to do a gluten challenge to know which it is? I would think it would require a leave from work, since I don't think I could function if had symptoms like this summer for 8 weeks. Would you suggest genetic testing (I'm sure I would have to do it outside of the health system)? My nutritionist will be ordering another blood test for cholesterol levels in 1 month. What other nutrients should I also ask to be tested for? (I do not live in the US and the health system has rigid guidelines, so might or might not be successful in getting them.) Thank you so much.
  15. Hi everyone, This is the first time I've made a post to a forum like this. Similar to most people posting on these boards I've suffered from undiagnosable and chronic ailments that have severely damaged my quality of life. My main symptoms are neurological but I have reason to believe the root problem is dietary. My mother recently had a bout with Breast cancer. She is in remission now, but the experience has made me want to make the most of my life. I have decided that it isn't enough to just trudge through life going through the motions. I want things to be easy for me like they seem to be for everyone else. I don't want getting out of bed in the morning to be a Herculean accomplishment anymore. I just want a chance, a fair chance to compete out in the world. I feel like I wasn't made for the world that I live in. I want to have a career and a family, but I fear without getting my health under control I won't be able to. It would be vert helpful if anyone said that my symptoms even sound familiar to them. I have been to doctor after doctor and very few have made any comments beyond "I dont know". Basic history: gender: female height: 5'7" weight: 113 lbs BMI: 17.7 Age: 23 Main symptoms: 1. Traumatic birth: I was born about a week late at 11 lbs 4 ounces, a very large baby delivered naturally through a very traumatic birth (forceps were used). Within hours of my mother first holding me in her arms she noticed me moving oddly, as if I was shivering from the cold. This shivering can be seen on home video footage. 2. Involuntary movements and tics: My entire childhood I suffered from severe tics and involuntary movements. I could not sit still for the life of me. I mean I could barely sit for ten minutes to watch a cartoon, and when the commercials came on I would leap from my seat and run around the house in circles. As I got older I got better at holding my tics in, and I would come home from school after a day of holding all that excess energy in and release it by literally sprinting up and down the stairs in my house for hours at a time with little relief. 3. Chronic fatigue: When I was 8 my grandmother passed away. Around that same time I felt that my tics had worsened, and I began to develop severe fatigue. The level of fatigue I reached is almost indescribable. A healthy person would only be able to reach that level of exhaustion after years of physical torture, and I say that understanding the full weight of that statement. I always thought that it was a coincidence that my health deteriorated so rapidly after my grandmother's death, but after reading that emotional upheaval can trigger dietary responses I'm not so sure anymore. 4. Persisting chronic fatigue: I maintained that level of fatigue until I was a freshman in high school. The years between age 8 and age 15 were the worst of my life. I completely lost these years. I was so tired sometimes that I felt like I was hallucinating, and I would intentional hurt myself to know whether I was awake or asleep. It felt like no matter how much I slept nothing changed the way I felt. 5. Diagnosed with Akathisia at age 15: Akathisia is a term for a chronic inability to be still and a feeling of inner restlessness. There is always a precursor for this disorder such as heavy drug use or brain damage, both of which do not apply to me. It's been explained to me that my neurological problems come from deep within the brain. The traumatic birth I experienced would not have been sufficient to cause Akathisia. I would've had to have brain damage to the point that I would not be a functioning human being. However, I was medicated with Clonodine which helped me enormously. This calmed the excess electrical energy in my brain and allowed me to sleep better and get my tics under control. 6. Persisting fatigue and low body weight: After being medicated with Clonodine it was like I was being freed from a prison. I was still tired and not able to function as well as my peers, but anything was better than what I had been living with. The euphoria from making some progress on my health problems was enough to keep my concerns at bay for about 5 years. 7. Pelvic floor dysfunction: After about 3 years of searching I diagnosed myself with Pelvic Floor Dysfunction. Intercourse is excruciatingly painful for me. This is because the muscles and ligaments of my lower abdomen have been inflamed to the point where they are tense and immoveable. Physical therapy has helped me a lot with this however my progress is slow and quick to reverse if I don't keep up with it, $200 a week for physical therapy and 20 minutes of exercise a day. I am so thankful I have the resources to pay for my doctors visits, but for someone like me who is working a full time job (and who has the added full time job of managing my various illnesses) that is really hard for me to keep up with. I certainly have some source of inflammation in my abdomen, I believe it's leaky gut. 8. Low weight: I am very skinny and always have been despite caloric intake or lifestyle. I've been told since I was 6 years old that I was shockingly skinny. Strangers feel compelled to comment on my weight and ask if I'm sick. Teachers and coaches pulled my aside in school to ask me if I had a problem with eating. At every turn my whole life people have iterated to me that I look sickly, pale, and anorexic. I managed to get my BMI into the normal range my senior year of college (yay, haha) by eating 8,000 calories a day, being completely sedentary, and with the help of an illegal appetite stimulant 9. Sinus infections and bronchitis: I would estimate prior to being medicated with Clonodine I got a sinus infection about once every six weeks and bronchitis twice a winter. After being medicated those numbers have about been cut in half. 10. Alcohol intolerance: I have never tolerated alcohol well but as I have got older its gotten worse. I used to simply turn a deep shade of purple when I drank, now I get nauseous and vomit almost every time I drink. 11. Insomnia: I have always had troubles with sleeping, however I am at the point where I cannot sleep without deadening my nervous system. My body only sleeps when I take something that addresses the excess neurological activity in my brain with marijuana, klonopin, opiates, alcohol, etc. I can take heavy doses of sleep medication and not be able to sleep. 12. Indigestion and diarrhea: I have diarrhea about four to five times a day and am always very gassy. I have gas pains sometimes that are so intense that it takes my breath away and I jump out of my seat in pain. 13. Poor concentration and OCD: I can't concentrate on anything very well and I have obsessive racing thoughts constantly. 14. Confusion and cloudiness of the mind: I constantly mess up what I mean to say. I often swap words within the same sentence. I often only say parts of sentences (ex: I meant to say "Where is he from?" but I end up saying "Where is he?"). I have identified this as a problem, however my family is reluctant to confirm this for me because they don't want to make me feel bad I think (more ridiculousness to deal with, although it comes from a good place). I will ask my mother if she notices me doing this and she'll say "that happens to everyone". But when I have a particularly bad moment of faltering with my words I'll ask my mother later what she thought about that incident and she'll respond by saying "I just said to myself you were having a bad day". (Confusion all around! Haha. I'm confused about whether or not I am confused, you gotta laugh at it sometimes!) CONCLUSION: If you've gotten to this point, thank you from the bottom of my heart for taking the time out of your day to try to understand whats wrong with me and offer guidance or helpful advice. It would be nice for someone to even say that they've been in my position. I've always assumed that I was the only human being on the planet walking around with a mysterious disorder called "Generalized Akathisia", but maybe I'm not and maybe theres something more that can be done to help me. At this point my family and close friends think that stress is causing the bulk of my problems, like I'm crazy and imagining this entire thing. I do think that stress plays a major role because every time my symptoms have worsened and health has deteriorated further this has been accompanied by a major stressor. But shouldn't I be able to handle stress the way everyone else does? Breaking up with a boyfriend and taking care of your sick mother are normal parts of life. What am I supposed to do? Move to a farm with no electricity and cut myself off from the world? ps: just ordered tests from Entero Lab, sample will be sent next week. Thoughts? Comments? Doctor recommendations in the Greater New York area?
  16. I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago. I have been having lingering neuro symptoms that no one can figure out. I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code. I know there is something else wrong....could it still be the damage from the celiac? Of course, but in my gut (no pun intended) I believe it is more. I have been logging lately, and it came to me this morning. OMG, could it be RICE? I am extremely sensitive to gluten exposure. I react insanely to gluten-free oats. The celiac doc put me on the Fasano diet. I did well, and there was some improvement with sleeping through the night. Neuro symptoms were still present, and to me, seemed worse. My brain would have a fluttering sensation at times, extreme dizziness/ lightheadedness, weakness to name a few symptoms (bone pain, back pain, arm pain etc) odd episodes where I could barely walk or speak from weakness. My psoriasis has been very angry lately What did I rely heavily on during the Fasano? RICE. The week I was away at the cottage, what did I eat for almost 2 meals a day? RICE. That was probably my worst week. The past few days, the dizziness has returned...I had chicken coated in a heavy brown rice flour mix, and made banana bread from a rice flour blend (which I generally don't eat). However, I cannot really find a link with rice and neuro issues. So maybe I am just grasping at straws here. But it seems to be a big coincidence. Also, when I was extremely ill before my dx, I could barely eat or keep food in. My neuro symptoms were off the charts then. I lived on rice cakes......sometimes twice a day....
  17. Celiac.com 11/01/2012 - Although most instances of gluten sensitivity manifest as a chronic, autoimmune disorder of the small intestine (celiac disease), around 10% of gluten sensitive patients suffer neurological symptoms. Usually these neurological symptoms accompany the more common intestinal issues, but some patients exhibit neurological symptoms exclusively. For this reason, it is thought that gluten-related symptoms in different parts of the body could be the result of autoimmune reactions to different members of the transglutaminase gene family. A recent lab study suggests that neurological gluten-related symptoms could be the result of an immune reaction to a particular neuronal enzyme known as TG6, and that this reaction occurs separate from other autoimmune reactions to gluten. Sera were collected from 6 groups: 20 newly diagnosed celiac disease patients (pre gluten-free diet) with no neurological symptoms, 34 gluten ataxia patients who tested positive for anti-gliadin antibodies, 17 peripheral idiopathic neuropathy patients, also positive for anti-gliadin antibodies, a control group of 18 genetic (non-gluten related) ataxia patients or individuals with clear family history of ataxia, a second control group of 14 patients with various immune-mediated but gluten-unrelated diseases and a third control group of 19 healthy individuals. Sera were tested through a series of protein analyses and enzyme-linked immunosorbent assays. In the celiac disease group, 18 of 20 patients tested positive for the TG2 autoantibody, with the remaining two testing postive for the TG3 or TG6 autoantibodies. 55% of celiac disease patients had multiple transglutaminase autoantibodies: 45% of all celiac disease patients had antibodies for both TG2 and TG3, 45% had antibodies for both TG2 and TG6, and 35% had antibodies for TG2, TG3 and TG6. Gluten ataxia patients were separated into two groups: those with intestinal symptoms (group GAE), and those without (group GAo). TG2 autoantibodies correlated well with intestinal symptoms: 12 of 15 in the GAE group tested positive for TG2 autoantibodies, while only 1 of 19 in the GAo group tested positive for them. TG3 autoantibody results were similar: group GAE results were comparable to the celiac disease group, while group GAo was no different from the control groups. In contrast, both gluten ataxia groups had similar results for TG6 autoantibodies. Overall prevalence of TG6 autoantibodies in the gluten ataxia group was 62%, compared to 45% in the celiac disease group. Inhibition studies showed that in group GAE (gluten ataxia with intestinal symptoms), autoantibodies reacted separately from one another, with TG2 and TG6 autoantibodies reacting independently of one another to their respective TG isozymes. This, along with the fact that some patients tested positive exclusively for TG6 would suggest that intestinal and neurological gluten-related symptoms are caused by separate immune reactions to different TG isozymes (TG2 and TG6, respectively). This is further supported by postmorten analysis of a gluten ataxia patient without intestinal symptoms, where TG6 deposits were found in the brain (TG6 could not be detected in a normal cerebellum). The findings of this study suggest that with more research, doctors may have another diagnostic tool in the form of TG6 autoantibody tests. This would help determine which patients with gluten sensitivity might be most at risk for developing neurological symptoms. Source: http://www.ncbi.nlm.nih.gov/pubmed/18825674
  18. 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. 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. ( 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
  19. Hi! I'm new to these forums (though I've lurked the last couple years), and I'm hoping you might have some advice, insight, or experiences to share with me. My husband was "diagnosed" with celiac disease in late 2009. His blood tests were ordered by our family practitioner and they came back positive. We were referred to a local GI doc. The GI told my husband that it was fine to continue the gluten-free diet prior to the endoscopy (we now know that is not the case). The doc also took only 1 or 2 samples of the small intestine. The endoscopy came back negative. Our family practitioner told us she was certain my husband had it, and she was willing to refer us to a GI doctor in a local large city, but since we already had a $1000 bill from a procedure that was done incorrectly, and it was obvious the gluten-free diet was working, we declined. Since then, my husband has maintained a strict gluten-free diet with no "cheating." He recently began having some neurological symptoms, mostly intermittent numbness/tingling in his arms and numbness and pain in his legs (especially the left). We've found a new GI and we're also seeing a neurologist. Thus far, the neurologist had ordered a brain/spine MRI, which came back negative. Blood levels of B12 are normal (though he does have low Vitamin D levels). The neuro is scheduling him for an EMG. He wanted to know if our new GI was going to confirm the celiac diagnosis, because celiac can be a cause of nerve damage. We had discussed the possibility with our GI. He ran a celiac panel, which came back negative, as was expected since my husband consumes no gluten whatsoever. If he was to do an endoscopy, he'd have to do a gluten challenge, and I have reservations. Nerve damage is nerve damage---the gluten-free diet isn't solving the numbness issues, so do we really need a diagnosis in terms of how we'll treat the nerve problems? My husband will get really sick---I don't know if it's worth affecting his job performance (he's at a new job and there's no paid time off for him, plus he's in the running to move up pretty quickly), let alone the fact that we have three small children...I'm just wondering if having that official diagnosis is worth the path to get there, considering it doesn't really change anything that we'll be doing. Anyway, it feels like we're hanging in limbo with no answers and it's frustrating. We're trying to figure out what's causing these nerve issues but we have no answers thus far. Also, if somehow it is celiac-related, obviously my husband is following his diet, so it doesn't look like there's much promise of the diet fixing the nerve issues. If you have any experience, please share! I don't even know how to continue this post because that's how up-in-the-air we are right now.
  20. Celiac.com 03/09/2010 - Celiac disease is a vastly growing epidemic. Those suffering from celiac have varying levels of difficulty digesting wheat, rye and barley; as celiac primarily affects the small bowel and is considered to be an autoimmune intestinal disorder. However, compounding new evidence sited in the March 2010 edition of the The Lancet Neurology, suggests that celiac disease also affects the nervous system, indicating a wider systemic disorder than previously thought. Thanks to modern science and years of testing, many neurological disorders are now being directly associated with gluten intolerance. The most common associations have been demonstrated to be, cerebellar ataxia and peripheral neuropathy. Although gluten has also been shown to impact drug resistant epilepsy, multiple sclerosis, dementia, and stiff-man syndrome among others. To accurately determine the effects gluten has on neurological health, testing by Hadjivassiliou and colleagues was done in three areas: serology, genetics, and clinical response to gluten withdrawal. As far as serological tests are concerned, IgG antibodies to gliadin (AGA) have long been considered the most accurate indicators of neurological gluten sensitivity. However, researchers are now finding that IgG AGA is no longer a relevant test for gluten sensitivity, and it is now being replaced with more dependable tests. In fact, researchers recently became aware of IgG DGP AGA as an nearly absolute marker for the connection between gluten sensitivity and celiac disease. Initial data also indicates that TG6 are markers for gluten sensitivity, while TG3 appears to be markers for dermatitis herpetiformis. Additionally, IgA antibodies to TG2, if they are detectable in the intestine, have also been shown to effectively connect neurological disease with gluten intolerance. Genetics is another important correlation between gluten intolerance and neurological disorders. Clinically speaking, the recognition of HLA DQ2 combined with a positive serology, increases the probability that gluten plays a roll in the manifestation of neurological pathogenesis. Evaluating gluten withdrawal is crucial when establishing the gluten/neurological abnormalities connection. The link has been clearly noted in patients newly diagnosed with cerebellar ataxia or peripheral neuropathy. After establishing a gluten-free diet, the patients showed considerable improvement of their neurological symptoms. However, patients that had neurological symptoms lasting longer than 12 months, did not typically show signs of neurological improvement once a gluten-free diet was initiated. The reason for this is thought to be a result of irreversible neural cell damage, such as a loss of Purkinje cells accompanied by prominent T-lymphocyte, as seen in patients with ataxia. While the findings of these studies indicated that gluten is a major factor associated with neurological disorders, further studies are needed to show conclusive evidence of the direct correlation between the two. Such findings may provide the key to determining if autoimmunity is fundamental in evoking gluten-sensitive neurological impairment. Source: The Lancet Neurology, Volume 9, Issue 3, Pages 233 - 235, March 2010
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