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Readers Respond: Do you have gluten ataxia or neurological symptoms due to gluten?

Responses: 61

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Updated March 20, 2012

march wobbler

It's 17th march and I have slipped back into feeling bad again even though I an on the strict diet.Legs are just as bad and getting a lot if pain again.It will soon be a year and I feel the same.I did improve for a while but it hasn't lasted.The dizziness comes and goes but the ataxia is just as bad.i see Dr.Hadjivassilliou next month and ask him if we can explore other avenues but I have had all the tests for everything so I think I am going to have to put up with it.Anyway sorry to be so downbeat.I have the diet automatically now but I don't think it makes any difference at all.
—Guest marie cooper

b12

All these symptoms can be caused by a b12 low not even off range. See the video/book, ''Could it be b12?''. I have balance issues, gluten problems, other AI disease they all bother b12 absorption. Check MMA.
—Guest b12

Symptoms shifting, Ataxia's now worst

I started having celiac 9 years ago. Didn't get a formal diagnoses until 3 years ago, which is ridiculous because I had textbook dermatitis herpetiformis. A bit of dizziness and brain fog have always been part of my symptoms, but took a back seat to DH, acid reflux, migraine and intestinal cramping. With time, my sensitivity to trace amounts of gluten has become exponentially worse and the neurological symptoms are intolerable. If I get glutened badly, I can't walk without holding onto something and can hardly see due to fuzzy vision. The severe effects last about 4 days. However, even trace gluten contact (the last bout was probably due to sharing a bowl of broccoli with friends who'd just finished sandwiches) results in low-grade symptoms that last a week or so. When the brain fog finally lifts, it's glorious. Like getting new glasses for the first time. I'm training a puppy to detect gluten for me and it looks like mobility assistance training is a good idea, just in case.
—Guest Liz

February Wobbler

I have not been on here for months as I have had a lot of trouble with anxiety.Last week I felt relly ill worse than I ever have...and I went in the Hallamshire hospital for a week and had some more tests.They were all okey and Dr. Hadjivassilliou has put me on some tablets that help the leg pain and the anxiety.I am home now and still sticking to the gluten free diet so see how I go.
—Guest Marie Cooper

almost 12 yo Son with likely GA

My son had 2 normal MRIs in 2002 at 18 months. At the time, he had issues that indicated communication issues between muscles and brain. We were surprised by the normal reading then. He was dxed w an underlying metabolic disorder that predisposed him to a sever and near fatal vaccine reaction. One year ago Feb 2012, we took him off wheat. We noticed immediate improvement in stability and balance. At that time, he couldn't take 2 steps without falling. He could barely stand with his crutches much less walk. In the last year, since GF/WF, the ataxia, balance, coordination, and stability dramatically improved. Even his voice was not shaky. I also have GA. They thought I had MS last winter. The Docs reran sons MRI Jan 2013 after my MRI showed white matter changes suspected from wheat / gluten. My sons MRI now shows "marked atrophy of the cerebellar vermis and moderate atrophy of the cerebellar hemispheres." Was I surprised to read that GA causes cerebellar atrophy? No.
—Guest Bec

cotton wool

I was diagnosed 10years ago as coeliac after blood tests only. The consultant said I was too ill to have an endoscopy at the time. low vitamin k. he asked me how I felt on a GF diet.I replied that after 48 hours I felt as if someone had opened my head and removed pounds of cotton wool that had been there for 30years or more. On eating as much as a breadcrumb I am dizzy, lack corordiantion and feel very sick. In the early days of the diet mishaps had me bedridden for at least the rest of the day. Now it's not so bad, not sure if this gives hope to others.
—fieldclose

marigold

I became unbalanced in 2009 after a hysterectomy and have been unbalaced ever since. I have not liked bread, pasta, sponge cake etc all my life I have felt 'full' after eating them (Inow realise this was bloating) and read about a lady who had the same symptoms and who was diagnosed with gluten ataxia. I went on a gluten free diet and improved. I am fighting to be diagnosed, I have 2 daughters and a younger sister. No-one has believed me and I am very alone in this. Gluten tests and genetic tests have been negative. I am always 'glutening' myself. One hope - I am hoping to be referred to Sheffield to the clinic there.
—Guest Su McDonnell

not as wobbly!

I have been on the gluten free diet for months. SinceMay 1st. It did no good at all and i got WORSE.But since november i have been a bit less wobbly and my head has stopped shaking so much.If any of you have been reading my 'wobbling' posts you will know how bad it's been on the diet.This improvement is small but it is there.After all this time I don't really mind the diet so much...I have found a few things I enjoy and the constant hungriness has passed.I can actually turn around now without hanging onto something.But I must stress I have waited six months to see any improvement.I keep doing small things I haven't done for years.|It's still difficult at times but I hardly give the food situation a thought.I have even joined a little bingo club and go to that for a couple of hours!Anyway hope you all feeling some benefit g.f. I am keeping it up.
—Guest marie cooper

I thought I was crazy

I was originally diagnosed (for over ten years) with an "unspecified autoimmune disorder" and my original symptoms were bilateral joint inflammation and peripheral neuropathy. I also had a huge variety of inflammatory symptoms, that came and went with a frustrating degree of irregularity. About ten years ago my mother was diagnosed as gluten intolerant and my siblings and I were also tested... Bingo It has taken years to reach a diet that allows me to feel normal about 2/3 of the time. Once I managed to remain GF for about six months straight without an accidental glutening I discovered that the depression and forgetful, foggy feelings I sometimes had were the first symptoms of a glutening. I actually thought it was just me! I am lucky, the neuropathy is unchanged so is probably permanent, but the forgetfulness and dark dog of depression only return with gluten. I am so much happier and healthier that I can not imagine willingly consuming gluten. It really looks like poison to me....
—Guest Muriah

Pretty sure I have Gluten Ataxia

I had both the bloodwork and biopsy to confirm Stage 4 Celiac's almost 2 years ago. I have been following a gluten free diet, but I have trouble with balance, walking into things, having my legs give out, and fell 7 times in the last 2 1/2 years, using a walker now for these problems. I have trouble understanding people talking to me sometimes, especially in groups, and lose words mid-sentence and just cannot come up with them. I am Type 1 diabetic, and have lost feeling in my feet and lower legs, and am starting to in my fingers, probably from both illnesses. I can give myself a dose of insulin, sit down to a meal, and can't remember if I did my insulin or not. I started keeping a daily marking system for insulin and meds. I drop things ALL the time, and knock over things, and have a hard time going down stairs because it feels like I'm going to fall, so I avoid them. I need to be diagnosed by a Dr. to be approved for disability, but don't know what to tell to them to look for
—Guest katatax(ia)

newly diagnosed with C.D.

I have spent many frustrating year sick with no results seizure like episodes. I asked my provider about C.D. test was positive .I do not know where to begin..Can anyone provide input as to how they cope with changes. I have neurologal symptoms as well.neurological symptoms are complicacated with another neurological diagnosed from medications used in the past .I live on a fixed income so affording nessary foods D oes anybody have any suggestions Please respond I will welcome any input anybody has
—Guest Theresa C. Holt

celiac with vertigo

I am 50 and began trying to figure out my health problems at least 15 years ago. I was finally diagnosed with celiac early this year. For me it was a possibility I had explored years before and then came back to after having ongoing iron deficiency. The symptoms with my gut are challenging but the real hurdle is the neurological symptoms. I cannot tolerate movement in some cases or any high places. I have to stay on the bottom floor of shopping malls and cannot use the escalator, I take a deep breath before crossing the street because it is so openit makes me dizzy. even looking up to speak with taller people throws me off. Thankfully I work with preschoolers since i am 5ft 1. Strangely I feel more comfortable as I am able to look down, not up. I could go on but just want to say i wish I had found out sooner although I still hold out hope that I could improve some over time on the diet
—Guest Donna2219

wobbling 7

So it is 31st.october. I have been on the gluten free diet for 6 months and I must say I have never felt so ill in my life.The ataxia is WORSE than in May and I am always hungry, tired weak and depressed.I saw Dr.Hadjivassilliou yesterday and had a blood test taken and I don't know what he makes of it.At least I hoped the condition would stabelise but I can't see getting worse an encouragement.I am staying on the diet and now I have got to the point of just accepting it all and watching telly.Even going to the shop on my scooter is an ordeal it's rediculous.Sorry.
—Guest marie cooper

Gluten & Dizziness

I am 51 years old and have been suffering from Dizziness for over 20 years.I had all the possible test but nothing was found.My family always knew not to move to much in front of me so it won't trigger my Dizziness.I always had this "light head"feeling and always made sure not to move my head too fast.1 month ago I started the "Atkins diet" which involved in eating more protein and less carb.I decided to eat only protein and vegetable for the first 2 weeks.After 10 days I notice that I didn't have this"light head"feeling anymore and I didn't feel dizzy.The feeling is amazing !!!!I am a new person.I am not touching the gluten anymore and it worth it!I hope my story will help someone.
—Guest Nathalie

ataxia diagnosis

i have ataxia been in a wheelchair 6 months now, can't walk, write or talk, my speech is so slurred all the time. they first diagnosed me with MSA., but my symptoms have lasted too long, should have been gone a few years ago...waiting on some blood work to come back...anybody have these symptoms??
—Guest celiacgirl

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