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Found 19 results

  1. Gini Warner

    Clumsiness and Imbalance

    Celiac.com 12/29/2018 - Imbalance and clumsiness may not be the most common symptom of the nervous system related to gluten intolerance but one of the most researched areas. Physicians use the term “ataxia” to describe poor coordination and balance. It can affect your walking and your ability to stand. While many systems contribute to your balance your cerebellum in the brain is the location that organizes all of the information and navigates your movements precisely. Some doctors claim that ataxia is one of the most common disorders produced by gluten in relationship to our nervous system. Poor coordination and clumsiness does occur with gluten intolerance and affects children as well as adults. Evidence suggests that this is all due to the immune system’s reaction to gluten itself. In people who are genetically at-risk for gluten sensitivity, gluten induces an immune attack against the protein gliadin and this antibody not only attacks gliadin in the gut but also attacks tissues far away from the intestines. In this case, through the bloodstream, these antibodies travel to the cerebellum and attack the Purkinje cells. As these cells become inflamed from the immune attack, the ability to integrate all the “balance information” is impaired, and coordination suffers. Symptoms like poor balance and coordination can result. A study in Britain examined 224 people with ataxia disorders. Some had an inherited disorder of ataxia, some had ataxia combined with other neurologic symptoms, and some simply had ataxia without known cause. Of those that were without known cause, 41 percent were found to have anti-gliadin antibodies supporting gluten sensitivity as a cause. In another study, ten patients with headaches and/or clumsiness were placed on a gluten-free diet. Over time, nine of the ten showed a beneficial response in all symptoms. The evidence is overwhelming. The presence of gluten antibodies, shrinkage of the cerebellum and the dramatic response to dietary change all support gluten as the cause.
  2. Celiac.com 10/03/2018 - Gluten-related disorders include the full spectrum of adverse clinical symptoms and conditions triggered by eating gluten. A team of researchers recently set out to review the available medical literature concerning MDs and gluten sensitivity with and without enteropathy. The research team included A Vinagre-Aragón, P Zis, RA Grunewald, and M Hadjivassiliou, with the Academic Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, South Yorkshire, UK. Celiac disease or gluten sensitive enteropathy is the most common manifestation, but clinicians have reported a number of extra-intestinal manifestations, which may occur without enteropathy. Gluten sensitivity is another term that has been used to include all gluten-related disorders, including those where blood tests show antibodies to gluten in the absence of any enteropathy. Gluten ataxia is the most common extra-intestinal neurological manifestation, and has been well documented. Clinicians have reported movement disorders related to gluten sensitivity. To assess the current medical literature on movement disorders and gluten sensitivity, both with and without enteropathy, the team conducted a systematic search on the PubMed database, and included 48 articles that met the inclusion criteria into the present review. This review demonstrates that the range of gluten related movement disorders goes beyond gluten ataxia, and shows that the majority of patients with gluten-related disorders benefit from a gluten-free diet. Read the full review at: Nutrients. 2018 Aug 8;10(8). pii: E1034. doi: 10.3390/nu10081034.
  3. Celiac.com 08/29/2018 - Up to one in twelve patients with gluten sensitivity develops neurological symptoms such as ataxia, dementia, seizures or peripheral neuropathy, though the reasons for this are still poorly understood. As a means of better understanding the immunological mechanisms behind this reality, a team of researchers recently reported the case of a 68‐year‐old male patient suffering from progressive ataxia and dementia associated with chronic diarrhea, and both elevated IgG and IgA antigliadin‐antibodies. The research team included Michel Mittelbronn, Jens Schittenhelm, Gellert Bakos, Rob A. De Vos, Manfred Wehrmann, Richard Meyermann, and Katrin Bürk. They are variously affiliated with the Institute of Brain Research at the University of Tübingen, and the Institute for Cell Biology, Department of Immunology at the University of Tübingen, Tübingen, Germany, the Neurological Institute/Edinger Institute, Goethe University Medical School, Frankfurt, the Department of Pathology, St. Georg Hospital, Leipzig, Germany, and with the Laboratory for Pathology, Enschede, the Netherlands. Autopsy indicated that frequent argyrophilic glial and neuronal inclusions within the basal nucleus of Meynert were the structural markers of the cognitive decline. The patient showed substantial neuronal loss in the cerebellar cortex and the inferior olives, along with infiltrating CD8+/perforin+/granzyme B+ cells, and reactive astrogliosis and microglial activation. In patients with gluten sensitivity and neurological disease, it is likely that CD8+ cytotoxic T and NK cells function as effector cells that trigger neuronal cell death, and thus might play some role in triggering cerebellar symptoms in gluten ataxia cases. The team concludes by noting that an absence of B‐ or plasma cells, along with multiple CD8+, granzyme B and perforin expressing cells in ataxia‐associated brain areas, indicates pronounced cytotoxic effects in neuro-pathogenesis of gluten sensitivity. This is one of the first reports to indicate that CD8+, perforin+, and granzyme B+ effector cells infiltrate the cerebellum and inferior olives in cases of gluten ataxia. Read more in: Neuropathology
  4. Hello, everybody! It's my first post here on the forum. I'm 25 year old and I leave in Bulgaria, Europe. I've been gluten free for the last 5 years. Initially when I started my gluten-free journey I didn't have ataxia symptoms but I wasn't very careful then and I often got glutened. Then the ataxia showed up gradually. Now I have slight unsteadiness almost all of the time and when I get accidentally glutened my symptoms get worse. I wanted to share my experience and hear about your experience too so that I get a better understanding if it's really ataxia or it's something else. Here are some of my questions: How quickly does the ataxia symptoms return after you get glutened (mine come in a matter of minutes, if not seconds - and I am curious if that's even possible or my mind is playing tricks with me)? Is the ataxia the first symptom to show after a reaction (even before the abdominal cramps, etc.)? Or they are the last to show up for you (or they don't show up at all because you've healed, etc.)? After going gluten free did the ataxia completely resolved or it's still there but just less noticeable? ...And I can probably ask you a lot more things but that's a good start Any comments are welcome and appreciated because I've been fighting this battle on my own for years now – no one in my country is even aware of things like non-celiac gluten intolerance, gluten ataxia, etc. I should also point out that for the last 3 years I've been eating only WHOLE, REAL foods and nothing else. I am really careful about cross-contamination. So I feel like I am doing my absolute best to avoid all gluten but the unsteady feeling and lack of balance is still there. It's not like I am falling or anything, but it's very disturbing and sometimes scary – and most importantly it stops me from fulfilling my full potential and going after my dreams.
  5. Celiac.com 01/15/2018 - Cerebellar ataxia with sensory ganglionopathy is a disabling combination of neurological dysfunction that usually occurs as part of certain hereditary ataxias. However, some patients present this combination with no apparent genetic cause. A team of researchers recently set out to if autoimmunity might have a role to play in SG. The research team included Panagiotis Zis, Ptolemaios Georgios Sarrigiannis, Dasappaiah Ganesh Rao, Nigel Hoggard, David Surendran Sanders, and Marios Hadjivassiliou. They are variously affiliated with the Academic Department of Neurosciences, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK; the University of Sheffield, Sheffield, UK; the Department of Neuroradiology, Sheffield Teaching Hospitals NHS Foundaiton Trust, Sheffield, UK; the University of Sheffield, Sheffield, UK; and the Academic Unit of Gastroenterology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK. The team reviewed records of all patients that have been referred to the Sheffield Ataxia Centre who had neurophysiological and imaging data suggestive of SG and cerebellar ataxia respectively. We excluded patients with Friedreich's ataxia, a common cause of this combination. All patients were screened for genetic causes and underwent extensive investigations. They found 40 patients with combined cerebellar ataxia and sensory ganglionopathy. The majority of patients were initially diagnosed with cerebellar dysfunction, and about one-third were initially diagnosed with sensory ganglionopathy. For that one-third, the two diagnoses were made together. The average time between the two diagnoses was 6.5 ± 8.9 years, ranging from 0 up to 44 years. The most common initial symptom was unsteadiness, in 77.5% of patients, followed by patchy sensory loss in 17.5%, and peripheral neuropathic pain in 5%. Nineteen patients had gluten sensitivity, of whom 3 patients had biopsy proven celiac disease. Other abnormal immunological tests were present in another 15 patients. Six patients had malignancy, which was diagnosed within 5 years of the neurological symptoms. Only 3 patients were classified as having a truly idiopathic combination of cerebellar ataxia with sensory ganglionopathy. This study shows that immune pathogenesis plays a significant role in patients with the unusual combination of cerebellar ataxia and sensory ganglionopathy. Source: Cerebellum & Ataxias 20174:20
  6. Dr. Vikki Petersen D.C, C.C.N

    Is Your Gut Creating Nervous System Trauma?

    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.
  7. Celiac.com 08/10/2017 - Gluten ataxia is defined as sporadic ataxia with positive antigliadin antibodies without an alternative cause. Gluten ataxia patients often receive MRS at baseline and again after a period on a gluten-free diet. A research team recently set out to evaluate the effect of gluten free diet on magnetic resonance spectroscopy (MRS) of the cerebellum in patients with gluten ataxia. The research team included M Hadjivassiliou, RA Grünewald, DS Sanders, P Shanmugarajah, N Hoggard. They are with the Academic Departments of Neurosciences (M.H., R.A.G., P.S.), Gastroenterology (D.S.S.), and Neuroradiology (N.H.), Sheffield Teaching Hospitals NHS Trust, UK. The team included 117 consecutive patients with gluten ataxia in their report. Sixty-three followed a strict a gluten-free diet with elimination of antigliadin antibodies, 35 ate a gluten-free diet, but still tested positive for antigliadin antibodies, while 19 patients were not following a gluten-free diet. The N-acetylaspartate (NAA)/creatine (Cr) area ratio from the cerebellar vermis increased in 62 out of 63 (98%) patients on strict a gluten-free diet, in 9 of 35 (26%) patients on a gluten-free diet, but positive antibodies, and in only 1 of 19 (5%) patients not on a gluten-free diet. The NAA/Cr ratio decreased in all 14 ataxia control patients (cerebellar variant of multisystem atrophy), while the researchers saw no differences in the MRS results between patients with celiac disease and those without. Better NAA/Cr ratios seen on follow-up scans supports previous findings that gluten ataxia patients see clinical improvement a gluten-free diet Such improvements can occur regardless of existing enteropathy, so patients with positive serology and negative duodenal biopsy should still maintain a strict a gluten-free diet. Source: Neurology. 2017 Jul 19. pii: 10.1212/WNL.0000000000004237.doi: 10.1212/WNL.0000000000004237.
  8. Celiac.com 01/16/2017 - Cerebellar ataxias can be caused by a wide range of disease processes, either genetic or acquired. Establishing a clear diagnosis requires a methodical approach with expert clinical evaluation and investigation. A team of researchers recently published a description of the causes of ataxia in 1500 patients with cerebellar ataxia. The research team included M Hadjivassiliou, J Martindale, P Shanmugarajah, R A Grünewald, P G Sarrigiannis, N Beauchamp, K Garrard, R Warburton, D S Sanders, D Friend, S Duty, J Taylor, and N Hoggard. They are variously affiliated with the Academic Department of Neurosciences, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK; Sheffield Diagnostic Genetics Service, Sheffield Children's NHS Foundation Trust, Sheffield, UK; the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK; and the Department of Neuroradiology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Trust, Sheffield, UK. All patients in the study were referred to the Sheffield Ataxia Centre, UK, and underwent extensive examination, including, where appropriate genetic testing using next-generation sequencing (NGS). The team followed-up patients on a 6-month basis for reassessment and further investigations, as needed. The team assessed a total of 1500 patients over 20 years. Twenty per cent of those patients had a family history of ataxia, with the remaining having sporadic ataxia. The most common cause of sporadic ataxia was gluten ataxia at 25%. They found a genetic cause in 156, or 13% of sporadic cases, with alcohol excess causing 12% and a cerebellar variant of multiple system atrophy causing 11% of sporadic cases. Using NGS, they obtained positive results in 32% of 146 patients tested. The most common ataxia they found was EA2. A total of 57% of all familial ataxias were supported by genetic diagnosis. The most common genetic ataxias were Friedreich's ataxia (22%), SCA6 (14%), EA2 (13%), SPG7 (10%) and mitochondrial disease (10%). The diagnostic yield following attendance at the Sheffield Ataxia Centre was 63%. Immune-mediated ataxias are common. Advances in genetic testing have significantly improved the diagnostic yield of patients suspected of having a genetic ataxia. Making a diagnosis of the cause of ataxia is essential due to potential therapeutic interventions for immune and some genetic ataxias. Gluten is a culprit is 25% of sporadic ataxia cases, and clinicians should keep this in mind when diagnosing patients, as many of these cases can be reversed with a gluten-free diet. Source: J Neurol Neurosurg Psychiatry. doi:10.1136/jnnp-2016-314863
  9. Hi. I think I have gluten ataxia, but I'm not sure. I have been diagnosed as having ataxia--it's in my medical records. I've also been diagnosed as having tiredness. I have also had brain MRI's which show a large white spot in my cerebellum. (You can see it in the photo. The doctors never seemed to notice it when they looked over my scans.) Also, I get fatigued during the digestive process, and the ataxia (hands closing themselves, etc.) occurs during hunger or digestion or eating. The doctors, back when I saw them, tested my blood for everything BUT gluten issues. They never told me that my ataxia could be caused by gluten issues. That was a few years ago, and I've now realized it. I don't feel like going back to the doctors and having more tests, especially since I'm a tad peeved that, if I'm right, they couldn't figure it out for me. Does anyone know the answers to these questions: Is gluten ataxia a form of gluten intolerance, but not of celiac disease? Can this web site be used for gluten ataxia, as well as celiac disease? Should I see the stupid doctors some more, or keep going off of gluten? (I've been gluten-free since Easter. I'm going through painful withdrawal at present.) Should I get a medical bracelet? Any other thoughts? Thanks!
  10. Hi, Has anyone experienced irreversible damage to brain caused by a gluten challenge to diagnose gluten ataxia? It is possible to have all the symptoms but no damage to your brain?
  11. Hi All, I've been stalking this forum for awhile and figured I should post my story. My 2 year old has been diagnosed with toddler diarrhea and we were told he'd grow out of it in a couple years. This was not an acceptable answer to me. A part of me was looking for an answer to his chronic diarrhea to find an answer for myself, to find an answer for my mother. Around 18 months he had a blood test for celiac but it was negative. His GI did warn me that just because it's negative now doesn't mean it won't test positive later. ? His stool samples were all fine, except he tested positive as a c. Diff carrier, meaning he tested negative for the toxins assoc with c diff. I have self diagnosed myself with IBS my whole life, I'm 34, because my mom has IBS. I also have a sensitivity to lactose. At least I can tolerate small amounts of milk, like a tbsp in coffee but not a whole latte's worth. This past year I've had 5 chemical pregnancies, or recurrent pregnancy loss. ? And my IBS episodes are starting to feel more like a symptom of something larger going on. So far testing for my rpl has revealed very low levels of estrogen. I also can not drink beer, especially wheat or brown ales, it causes me to immediately bloat and have horrific hangovers. Since my pregnancy with my son I can't tolerate soy milk either. My son and I saw a nutritionist recently who put us on a low carb, gluten & dairy free diet. The first week we only went low carb and both of us got WAY worse and lost our energy. Week 2 we additionally cut gluten & dairy. We went from bad to worse! My thyroid literally sent me into hybernation mode and was having kidney pain. After throwing up, we both stopped this diet. Pizza perked us both back up. However the day after returning to a normal diet my body attacked me at 5am! I woke up in pain, like my insides were melting. After hours on the toilet I was finally able to get some rest. I'm on day 2 of another attack today. Yesterday I had trouble waking up, my eyes felt heavy all morning, I made silly mistakes like giving my son 2 sausages and my husband & I only 1. Trying to make a grocery list for the week was a difficult task. I couldn't concentrate or focus on meal planning. Silly mistakes continued at the store, and by the time dinner was made my "bad tummy" episode began. Abdominal cramping had me doubled over the rest of the evening. Pepto helped reduce it to a functional ache, and mild nausea. The cramping/ nausea continues today along with a headache. I'm seeing a GI tomorrow to be tested for celiac, or anything else that could be doing this to me. My mom is in her 60's and I believe her ailing health is the result of untreated celiac. She swears she's been tested and it "always comes back as IBS", but I'm not sure what her testing has consisted of. This past year she's been randomly falling down without any medical reason. She also has occasional seizures, again no medical reasoning has been found. She had terrible endrotremisosis that resulted in a full hysterectomy in her 40s. And early onset osteoporosis. Year after year she has these awful medical anomalies with no under lying conditions to explain them. I see this pattern starting to emerge in me and it terrifies me. I've had a random attack of vertigo and shingles in my early 30's. Now I can't hold on to a pregnancy. I hate seeing what I recognize as my IBS symptoms in my son already. We are truly a family in need of an answer! I'll try to keep this post updated as I go through testing. Regardless of outcomes, we'll be starting a proper gluten free trial period once I've had the testing done. I'm anxious to start that actually. Thank you for enduring my essay of medical complaints.
  12. 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
  13. Hi all I have been reading the boards and finding many useful tip and information. A little about me....I am 57 yo female, extremely healthy and an athlete. I have been on a Paleo diet for over 3 years, which is gluten free. I work out at least 5 days a week and also (try) hot yoga at least 3-4 days a week depending on fatigue level. Prior to this diagnosis of Celiac Ataxia, I ran two half marathons in SF and was doing CrossFit which is Olympic weight lifting. I was severely overweight 10 years ago, lost close to 100 lbs. and have maintained a very healthy life style. Fast forward to now...I am struggling with gait, imbalance and have brain fog and fatigue. Interesting fact I can jog fine yet walking can be difficult as I do the "drunk walk". I am ever so careful about cross contamination and basically eat out very little for fear of gluten. I feel that diet and exercise are key to helping with the symptoms of ataxia so there are time I push myself to get to the gym or yoga. My diet consists of fresh food and nothing out of a box or package. It is very frustrating when the brain fog sets in as I feel there was something gluten attacking my body, and this last episode lasted two days. Today I feel better! I take one day at a time. I am fortunate to live in the SF Bay Area so UC Berkeley and Stanford are accessible. So far I have an appt. to visit UC Berkeley as there is a team there who obtained a grant to study this horrible illness. I will be sure to post any updated information. I see my neuro Monday May 4th to discuss options. Has anyone here had experience or knowledge of IVIG treatment for this? I would be grateful to hear any information. I feel I am in the very early stages of this, as I can walk (some days are harder than others as the imbalance makes me dizzy). ALL my test including MRI and CT are normal as well as endo. I told the doctor I feel like a hypochondriac because I feel horrible yet all my tests come back normal. I have issue when turning corners and the brain fog impairs me driving (so I don't drive on days I feel heavy brain fog). I am hoping that there is more additional information from members here and will contribute my findings as well. I am joining the UC Research in hopes to pay it forward as they are not a treatment center only research. Thank you for your time and hope to get some replies, especially on the IVIG Treatment.
  14. Celiac.com 10/27/2014 - There have been a few reports tying cortical myoclonus with ataxia to celiac disease. Such reports also suggest that the former is unresponsive to a gluten-free diet. A team of researchers recently set out to determine if there is any significant connection between the two conditions. The research team included Ptolemaios G. Sarrigiannis, Nigel Hoggard, Daniel Aeschlimann, David S. Sanders, Richard A. Grünewald, Zoe C. Unwin, and Marios Hadjivassiliou. They are variously associated with the Departments of Gastroenterology, Neurology, Neurophysiology and Neuroradiology at Royal Hallamshire Hospital, in Sheffield, UK, and with the College of Biomedical and Life Sciences at Cardiff University in Cardiff, UK. The team presented detailed electro-clinical characteristics of a new syndrome of progressive cortical hyperexcitability with ataxia and refractory celiac disease. Regular follow ups of over 600 patients with neurological manifestations due to gluten sensitivity revealed 9 patients with this syndrome. They found that all nine patients, six men and three women, experienced asymmetrical irregular myoclonus involving one or more limbs and sometimes face. This was often stimulus sensitive and became more widespread over time. Three patients had a history of Jacksonian march, and five had at least one secondarily generalized seizure. Electrophysiology showed evidence of cortical myoclonus. Three showed a phenotype of epilepsia partialis continua at onset. All patients showed clinical, imaging and/or pathological evidence of cerebellar involvement. All patients followed a strict gluten-free diet, and most successfully eliminated gluten-related antibodies. However, all patients still showed evidence of enteropathy, suggests that refractory celiac disease is to blame. During the study, two patients died from enteropathy-associated lymphoma and one from status epilepticus. Five patients were treated with mycophenolate and one in addition with rituximab and IV immunoglobulins. These patients showed improvement of ataxia and enteropathy, but continued to suffer the effects of myoclonus. These results indicate that myoclonus ataxia might be the most common neurological manifestation of refractory celiac disease. The clinical involvement, apart from ataxia, covers the whole clinical spectrum of cortical myoclonus. Source: Cerebellum & Ataxias 2014, 1:11. doi:10.1186/2053-8871-1-11
  15. Hi Guys, I am new on this blog; this is my first post. I am an anesthesiologist. My son has ataxia ( impaired wobbly gait) with poor core strength, inability to stand still without support and abnormal arms movement; he is seven years old now and these movements started since he was four years old. He has seen pediatric neurologists multiple times; he had an MRI of the brain done and it was normal. They think he might have ataxia telangiectasia. Recently he had lab work done for gluten sensitivity and it surprisingly it came back strongly positive (Tissue transglutaminase antibody IgA 137 (Normal 0-9) Endomysial andtibody titer 1:160 (Normal less than 1:10). This came as a shock since he never had any GI symptoms. I looked up online and there is an association of gluten sensitivity with neurological symptoms. He has been gluten free for the last three weeks but his symptoms have not improved. What I read online said that it typically takes 3-6 months before any improvement is noticed. I just wanted to ask if anybody else on this forum had experienced any neurological symptoms with celiac disease and if their symptoms improved with gluten free lifestyle. Thanks.
  16. I was diagnosed last March, and I've been pretty confident it was caught on the early side -- I had 'mild villous atrophy" and it was "in patches". My symptoms were inconsistent, sometimes GI, and in retrospect -- I see that the hives and itchiness I'd been experiencing were probably related. However, once about a month before my diagnosis and again a week or two after I'd gone gluten free, I had an episode where I suddenly was speaking to someone and had trouble forming words. Both episodes lasted about 10 minutes or so. After doing some reading, I decided they must be celiac related and since I didn't have another episode, I figured it would end with my healing. Well, my 3 month followup endoscopy showed normal villi and my bloodwork was fine. I hadn't had another episode until today. I'm pretty sure I was glutened about two weeks ago (first time in ages), and for the last day or two, my brain/head has felt "buzzy" or pressure filled, making me sort of dizzy and relieved briefly by a big exhale. Then today, I had another, briefer episode of not being able to form words. Scared me silly. Does this sound like a neuro/celiac symptom? I always figured that they were caused by prolonged vitamin deficiency, and as I've only had the one glutening, it seemed unlikely. Is this Ataxia? I have my annual physical coming up mid-October, but I'm wondering if I should be worried before then. And what should I be asking my Dr. for? An MRI? Any advice is welcome. I'm a bit scared, to be honest, and I thought I had this Celiac thing under control.
  17. Celiac.com 05/09/2013 - Previous studies have shown an immunologic response primarily directed against transglutaminase (TG)6 in patients with gluten ataxia (GA). A team of researchers set out to see if Transglutaminase 6 antibodies could be helpful in the diagnosis of gluten ataxia. The team included M. Hadjivassiliou, P. Aeschlimann, D.S. Sanders, M. Mäki, K. Kaukinen, R.A. Grünewald, O. Bandmann, N. Woodroofe, G. Haddock, and D.P. Aeschlimann. They are variously affiliated with the Departments of Neurology (M.H., R.A.G., O.B.) and Gastroenterology (D.S.S.) at Royal Hallamshire Hospital in Sheffield, UK, the Matrix Biology & Tissue Repair Research Unit (P.A., D.P.A.) of the School of Dentistry at Cardiff University in Cardiff, UK, the Department of Paediatrics (M.M., K.K.) of the School of Medicine at University of Tampere in Finland, and the Department of Biological Sciences (N.W., G.H.) at Sheffield Hallam University in Sheffield, UK. For their prospective cohort study, the team looked at patients from the ataxia, gluten/neurology, celiac disease (celiac disease), and movement disorder clinics based at Royal Hallamshire Hospital (Sheffield, UK) and from the celiac disease clinic at Tampere University Hospital in Tampere, Finland. Patients were broken into groups that included idiopathic sporadic ataxia, gluten ataxia, celiac disease, and neurology, along with healthy control subjects. The team screened all subjects for TG6 antibodies, and conducted duodenal biopsies on all patients with positive blood screens. In addition, they analyzed biopsies from 15 consecutive patients with idiopathic sporadic ataxia and negative serology for gluten-related disorders for immunoglobulin A deposits against TG. They found TG6 antibodies in 21 of 65 (32%) patients with idiopathic sporadic ataxia, in 35 of 48 (73%) patients with GA, in 16 of 50 (32%) patients with celiac disease, in 4 of 82 (5%) neurological control subjects, and in just 2 of 57 (4%) healthy control subjects. The results showed that forty-two percent of patients with GA had enteropathy, as did 51% of patients with ataxia and TG6 antibodies. Five of 15 consecutive patients with idiopathic sporadic ataxia had immunoglobulin A deposits against TG2, 4 of which subsequently tested positive for TG6 antibodies. Follow-up screens showed that one year of gluten-free diet left TG6 antibody levels greatly reduced or undetectable. The study shows that antibodies against TG6 are gluten-dependent and that they seem to be a sensitive and specific indicator of gluten ataxia. Source: Neurology. 2013 Apr 10.
  18. Brain. 2003 Mar;126(Pt 3):685-91. Celiac.com 08/11/2005 – Researchers in the United Kingdom screened 224 patients with various forms of ataxia (59 with familial, 132 sporadic idiopathic, and 33 with clinically probable cerebellar variant of multiple system atrophy MSA-C) for the presence of antigliadin antibodies and found that 24% of the ataxia patients were sensitive to gluten, and 72% of them had the HLA DQ2 genetic marker. Their results were compared with those of 1,200 healthy controls. Among the familial ataxia group 8 or 59 (14%), 54 of 132 (41%) of the sporadic idiopathic group, 5 of 33 (15%) in the MSA-C group, and 149 of the 1,200 (1.24%) controls, screened positive for antigliadin antibodies. The difference in prevalence between the idiopathic sporadic groups and the other groups was highly significant. Gastrointestinal symptoms were present in only 13% of the ataxia patients. MRI testing found atrophy of the cerebellum in 79% and white matter hyperintensities in 19% of the ataxia patients, and 45% of patients had neurophysiological evidence of a sensorimotor axonal neuropathy. The researchers conclude that gluten ataxia is the single most common cause of sporadic idiopathic ataxia, and antigliadin antibody testing is should be done immediately on everyone with symptoms of sporadic ataxia.
  19. J Neurol Neurosurg Psychiatry. 2003;74:1225-1230 Celiac.com 10/08/2003 – According to a study done by Dr. Hadjivassiliou and colleagues at the Royal Hallamshire Hospital in Sheffield, U.K., a strict gluten-free diet is effective treatment for gluten ataxia. According to the Dr. Hadjivassiliou: Gluten ataxia is an immune mediated disease, part of the spectrum of gluten sensitivity, and accounts for up to 40% of cases of idiopathic sporadic ataxia, further: In some case reports, adherence to a gluten-free diet is assumed or based on improvement of gastrointestinal symptoms or on duodenal biopsy, without concurrent serological evidence of elimination of circulating antigliadin antibodies. No systematic study of the effect of a gluten-free diet on a cohort of patients presenting with neurological dysfunction with or without an enteropathy has yet been reported. Their study looked at 43 patients with gluten ataxia, 26 of whom adhered to a gluten-free diet for one year (14 patients refused the diet, and three were eliminated after testing positive antigliadin antibodies). After one year the group of 26 on the gluten-free diet showed significant improvement on ataxia tests compared with the gluten-eating group. The researchers conclude: Gluten ataxia responds to a strict gluten-free diet even in the absence of an enteropathy. The diagnosis of gluten ataxia is vital as it is one of the very few treatable causes of sporadic ataxia, further: The evidence that gluten ataxia is a manifestation of gluten sensitivity is now substantial and analogous to the example of dermatitis herpetiformis, from which it is apparent that the gut is not the sole protagonist in this disease."