Gluten Ataxic and don't quite understand how this all works

General
1

I'm just wondering how other people on this forum are affected when they are glutened as I really don't know whether all of my symptoms are attributable to gluten ataxia.

Gluten causes me to be sick for a few days, good for a few days and then completely hit the deck. I get severe earache, migraine, tinnitus, garbled speech, fatigue, I startle at nothing and have a complete lack of co-ordination. I also wake up choking at night if I sleep on my side. I have a permanent tremor and with the latest episode there's not much of me that isn't numb.

If there's anyone out there who knows of a good Neuro in NZ or Australia who is familiar with these types of issues, I'd be very grateful if I could get their name too please.

Many thanks

Poppy

2

Hi Poppy,

It may be worth your while to get the blood test that test for gluten intolerance. Having said that I am not considered in a conventional sense to have a gluten problem, but I get very red and itchy eyes plus I think sore joints from eating gluten.
I started a food diary about two months ago to see if I was worse after certain foods. Gluten can be hidden in things so while you may avoid gluten, could there be foods you are accidently eating? Just a thought.

I can't recommend a Neuro for you, but I have found that when I recently rang around for a new Neuro I would ask the receptionist if they had a special interest in balance disorders (this was before my recent diagnosis). Ring around and ask if anyone has an interest in Gluten Ataxia. I do think it is a new area so there may not be too many around.

Sorry that your symptoms are so bad right now, waking up choking must be awful. I sleep semi-sitting up with pillows on each side of me so I don't accidentally roll over as that triggers balance issues.

Lucy

3

hi Poppy - I cant help with the neuro in NZ or Aus as Im in the UK but I too have gluten ataxia. Many of your symptoms sound like ataxia - migraine is a symptom related to gluten; as is fatigue and the unco-ordination/balance as the cerebellum is affected and this is the balance centre in the brain, Im told that swallowing can be affected and tremor seems to be an ataxia symptom. For me being jumpy - is that what you mean by 'startle at nothing'? I was like that. I also had peripheral neuropathy which can cause numbness.

The good news is that most of my symptoms are majorly improved now after 3 years of being gluten free. Ive found that i need to be very strict - so dont have foods that say 'may contain traces of gluten or cereals' as this is too big a risk for me to want to take - the antibodies caused by eating gluten stay in your system for months and cause problems! Many of the symptoms may be caused by vitamin/mineral deficiiencies - which may be the cause of the numbness for example. The cerebellum is attacked (not sure how this works!) and this causes the problems of balance and concentration.

My 'top tips' are:

Be kind to yourself and accept that at the moment you get tired more easily so get enough sleep!

Take a good vitamin and mineral complex (gluten free of course) and fish oils as well if you can! get your B12 and vitamin E and iron levels tested as these are common deficiencies in GA I understand

Read what Dr/Prof Marios Hadjivassilliou (Sheffield) has written about gluten ataxia

Read labels of everything - gluten is in so many things that you wouldnt imagine - pate, potato crisps, soups, baked beans, gravy powder and sauce mixes, etc as well as the obvious cakes, bread and biscuits

Coeliac websites such as coeliac UK offer some useful info but I dont think they are strict enough for those of us with GA

Ask in restaurents whether foods are cooked in the same oil as gluten containing products - I have found they tell you (and think its correct) that their chips or onion bhajis, for example are gluten free, but iff you question them you find they use the same oil to cook battered fish or onion rings - which contamiinates the oil and means it isnt gluten free - tell them you have to be really careful or it will make you ill - i think they have visions of you throwing up ha ha!!

gluten free oats are supposed to be ok but I avoid them as I think they give me symptoms - some people avoid other grains too and there is a good website with a lot of info on this called www.trulyglutenfree.co.uk

Your symptoms will improve Im sure if you are strict with the diet and I have found that there are GF alternatives ffor most foods, though sometimes you have to make them yourself, so if you cant cook you need to learn!!

hope that helps, please ask if I can help with anything and you can message me privately if you would find that helpful,

best wishes,

Gill

4

Can’t help you from the United States but here is a website for the NZ and Australia Neurologists Association:
http://www.anzan.org.au/
Try to contact them. May be they can give you a name?

Good luck to you. Hope you find an answer to your questions.

5

Dear Poppy, I personally don't have gluten ataxia, although many people on this site do. I do have slurred speech and fatigue, but do not have earache, migraine or tinnitus. My symptoms are mainly gait balance, dexterity, speech, swallowing, and tight muscle issues 24/7. I see you've received some wonderful information thus far! I live in the States and just wanted you to know my thoughts are with you!..., ;o)

6

I take zoloft which is a prozac and alzolum to stop the shaking and nap 2 hours a day very important

7

Can you be sensitive to gluten even if the gluten intolerance test is normal and one has no celiac history??

8

Thank you for all of your replies and wonderful suggestions.

I've been lucky enough to find out today that gluten ataxia can follow the pattern mine seems to exhibit, unwell for a bit, good for a time and then really sick so I now feel very confident that I have an answer to my issues. It will now just be a matter of time and looking after myself to regain good health. I very much look forward to feeling really good again and to start participating in 'life' again.

Yes neta, you can be highly intolerant/allergic to gluten even if no history of Celiac. I have always tested negative, yet I have recently proved that gluten is literally a poison to me. If you look up this article you will see that the condition of 'non Celiac gluten sensitivity' is starting to be recognised. Because NCGS doesn't show up in 'traditional' testing it is actually a very dangerous condition to have if you don't avoid gluten because of the 'autoimmune cascade' effect.

http://www.hindawi.com/isrn/neurology/2012/792192/

9


I too have those same symptoms. Plus a brain injury, so I'll look into this gluten thing. It all helps
rose said:

Dear Poppy, I personally don't have gluten ataxia, although many people on this site do. I do have slurred speech and fatigue, but do not have earache, migraine or tinnitus. My symptoms are mainly gait balance, dexterity, speech, swallowing, and tight muscle issues 24/7. I see you've received some wonderful information thus far! I live in the States and just wanted you to know my thoughts are with you!..., ;o)

10

This is the third time I am writing this. Anyway, thanks so much for you remarks and I will definately look into it. I took the gluten test two years ago or less and at that point my neurologist said there was no point in giving up gluten products because I was not sensitive to gluten. Nevertheless, what you say is quite ineresting. In the link which you sent, I did not see references to gluten or ataxia. But I probably missed them. I hope things get better for you. N

Poppy said:

Thank you for all of your replies and wonderful suggestions.

I've been lucky enough to find out today that gluten ataxia can follow the pattern mine seems to exhibit, unwell for a bit, good for a time and then really sick so I now feel very confident that I have an answer to my issues. It will now just be a matter of time and looking after myself to regain good health. I very much look forward to feeling really good again and to start participating in 'life' again.

Yes neta, you can be highly intolerant/allergic to gluten even if no history of Celiac. I have always tested negative, yet I have recently proved that gluten is literally a poison to me. If you look up this article you will see that the condition of 'non Celiac gluten sensitivity' is starting to be recognised. Because NCGS doesn't show up in 'traditional' testing it is actually a very dangerous condition to have if you don't avoid gluten because of the 'autoimmune cascade' effect.

http://www.hindawi.com/isrn/neurology/2012/792192/

11

Yes my test said I came out on the normal end. I've been off Gluten since 2006, no sugar, no flour or additives. I know it's been making a huge difference in my ataxic symptoms. My Dr. suggested I go off for 2 weeks to see if I felt any better, after being off 6 weeks I really noticed a difference. I lot my sciatic nerve was the biggest thing. I also stopped tripping as much as I was. Now I have a guarantee that I absorb all my vit and min in my foods! Iti sound too simple but now I can use my foods that I eat as meds. The way nature intended in the first place.

I was told I was in the category of Sporadic SCA. My thought is why not? I was told to go back on Gluten to see how I feel to really know. But I don't want to take that chance of anything coming back and not being able to get rid of it again. It's not hard. People think it's so hard to be off. But One it's worth keeping my cerebellum stopped I don't want to take a chance of it starting up again. Two they try to substitute other forms of flour or foods. I just eat natural foods no sauces etc. Your taste buds start to taste real foods. You don't want other stuff in your body. It doesn't taste as good. After 3 days of not having refined sugar along with no Gluten I noticed colors were more clear to me. Everything came alive again like it would I guess for a smoker!

I heard somewhere that it takes some longer to get it out totally from their system depending on how long they kept having gluten in their diet.

Good luck with your choice.

neta said:

Can you be sensitive to gluten even if the gluten intolerance test is normal and one has no celiac history??

12

Curious. Now that you are gluten-free, has the ataxia stopped or is the damage done, so to speak?N

gfgill said:

hi Poppy - I cant help with the neuro in NZ or Aus as Im in the UK but I too have gluten ataxia. Many of your symptoms sound like ataxia - migraine is a symptom related to gluten; as is fatigue and the unco-ordination/balance as the cerebellum is affected and this is the balance centre in the brain, Im told that swallowing can be affected and tremor seems to be an ataxia symptom. For me being jumpy - is that what you mean by 'startle at nothing'? I was like that. I also had peripheral neuropathy which can cause numbness.

The good news is that most of my symptoms are majorly improved now after 3 years of being gluten free. Ive found that i need to be very strict - so dont have foods that say 'may contain traces of gluten or cereals' as this is too big a risk for me to want to take - the antibodies caused by eating gluten stay in your system for months and cause problems! Many of the symptoms may be caused by vitamin/mineral deficiiencies - which may be the cause of the numbness for example. The cerebellum is attacked (not sure how this works!) and this causes the problems of balance and concentration.

My 'top tips' are:

Be kind to yourself and accept that at the moment you get tired more easily so get enough sleep!

Take a good vitamin and mineral complex (gluten free of course) and fish oils as well if you can! get your B12 and vitamin E and iron levels tested as these are common deficiencies in GA I understand

Read what Dr/Prof Marios Hadjivassilliou (Sheffield) has written about gluten ataxia

Read labels of everything - gluten is in so many things that you wouldnt imagine - pate, potato crisps, soups, baked beans, gravy powder and sauce mixes, etc as well as the obvious cakes, bread and biscuits

Coeliac websites such as coeliac UK offer some useful info but I dont think they are strict enough for those of us with GA

Ask in restaurents whether foods are cooked in the same oil as gluten containing products - I have found they tell you (and think its correct) that their chips or onion bhajis, for example are gluten free, but iff you question them you find they use the same oil to cook battered fish or onion rings - which contamiinates the oil and means it isnt gluten free - tell them you have to be really careful or it will make you ill - i think they have visions of you throwing up ha ha!!

gluten free oats are supposed to be ok but I avoid them as I think they give me symptoms - some people avoid other grains too and there is a good website with a lot of info on this called www.trulyglutenfree.co.uk

Your symptoms will improve Im sure if you are strict with the diet and I have found that there are GF alternatives ffor most foods, though sometimes you have to make them yourself, so if you cant cook you need to learn!!

hope that helps, please ask if I can help with anything and you can message me privately if you would find that helpful,

best wishes,

Gill

13

I'm such a ditz at times. I gave you the wrong web page. No wonder you couldn't find any references to gluten ataxia!! So sorry.

Here's the right one: http://www.hindawi.com/crim/immunology/2013/248482/

Poppy said:

Thank you for all of your replies and wonderful suggestions.

I've been lucky enough to find out today that gluten ataxia can follow the pattern mine seems to exhibit, unwell for a bit, good for a time and then really sick so I now feel very confident that I have an answer to my issues. It will now just be a matter of time and looking after myself to regain good health. I very much look forward to feeling really good again and to start participating in 'life' again.

Yes neta, you can be highly intolerant/allergic to gluten even if no history of Celiac. I have always tested negative, yet I have recently proved that gluten is literally a poison to me. If you look up this article you will see that the condition of 'non Celiac gluten sensitivity' is starting to be recognised. Because NCGS doesn't show up in 'traditional' testing it is actually a very dangerous condition to have if you don't avoid gluten because of the 'autoimmune cascade' effect.

http://www.hindawi.com/isrn/neurology/2012/792192/

14

Neta,

I have Gluten Ataxia. I was also diagnosed with Celiac Disease. However, many people can still be sensitive to gluten without having Celiac Disease. I never had gut symptoms (gas, diarrhea)

In 2008 I was so sick that I was essentially carried out to a car and driven home my last day of work. I looked very much like someone who has Multiple Sclerosis. My head dropped, arms don't swing, legs drag. Extreme fatigue (worse than when I had anemia). I was sleeping 10-12 hours every night then napping through out the day. I was only able to crawl down the hall to the bathroom and bedroom, but could do nothing else to care for myself. My skin was very dry. My cognition was tested and fell into the 7-9% on memory, reasoning and speech. The test is called a neuro-physic exam. Three different kinds of neuropathy. Extreme vertigo. Everything hurt. Speech problems, I couldn't even think of words for common object (rice, bird, ) or understand what people where saying to me. It felt like people where speaking Chinese to me (not my native language).

I was diagnosed in January 2009. Both my gastroenterologist(gut doctor) and neurologist understand gluten ataxia. Most don't. Six months later I had most of my function returned. I still have some lingering ataxia and neuropathies. This is in part because I was older (over 50) when I was diagnosed and had gone for years without a diagnosis. If I accidentally eat any gluten now, within 16 hours the ataxia is back in full force. This will last 3-6 weeks. I am on disability because of it.

So, yes. Gluten can cause ataxia. It's not common, but does happen. I hope this helps you.

"Poppy" We're all with you! ;-)

15

Dear Julie,

Thanks for responding. I tested normal for gluten and never had any gut issues. But who knows maybe the tests are/were wrong.

The blood tests only showed a certain abnormality in various antibodies, which pointed to an auto-immune problem. I do have gas but I chalked that up to the anti-depressant that I am taking. I wonder what are the other "signs" of gluten ataxia? I have sudden weight gain. Is that also a gluten clue?Or just over-eating?

So now that you are glutenfree so to speak, you should be much better regarding ataxia, right? Sorry to hear u suffered so much. Do you really live in Colorado? I hear it is mega-beautiful. N

Julie in Colorado said:

Neta,

I have Gluten Ataxia. I was also diagnosed with Celiac Disease. However, many people can still be sensitive to gluten without having Celiac Disease. I never had gut symptoms (gas, diarrhea)

In 2008 I was so sick that I was essentially carried out to a car and driven home my last day of work. I looked very much like someone who has Multiple Sclerosis. My head dropped, arms don't swing, legs drag. Extreme fatigue (worse than when I had anemia). I was sleeping 10-12 hours every night then napping through out the day. I was only able to crawl down the hall to the bathroom and bedroom, but could do nothing else to care for myself. My skin was very dry. My cognition was tested and fell into the 7-9% on memory, reasoning and speech. The test is called a neuro-physic exam. Three different kinds of neuropathy. Extreme vertigo. Everything hurt. Speech problems, I couldn't even think of words for common object (rice, bird, ) or understand what people where saying to me. It felt like people where speaking Chinese to me (not my native language).

I was diagnosed in January 2009. Both my gastroenterologist(gut doctor) and neurologist understand gluten ataxia. Most don't. Six months later I had most of my function returned. I still have some lingering ataxia and neuropathies. This is in part because I was older (over 50) when I was diagnosed and had gone for years without a diagnosis. If I accidentally eat any gluten now, within 16 hours the ataxia is back in full force. This will last 3-6 weeks. I am on disability because of it.

So, yes. Gluten can cause ataxia. It's not common, but does happen. I hope this helps you.

"Poppy" We're all with you! ;-)

16

hi Neta

my symptoms have improved greatly - my main symptoms were fatigue, peripheral neuropathy in my feet, balance issues and brain issues of poor concentration/memory and underactve thyroid. I am not currently taking any thyroid medicines which Im amazed at! I am not so tired as I was and my balance is better - it was never too bad just a greater tendency to fall than most people, my concentration is so so much better but not perfect and may never be but it is improving still so maybe there is hope - I recently felt that I had made another 'jump' in improvement! My feet are so much better its wonderful - if I walk for a llong time then they get painful but with the right shoes I can wander about for hours, say at the coast! all in all the GF diet has been amazing and well worth swapping an eclair or a sandwich for much improved health!! Gill

17

Very interesting Wondering.... did you take a blood test indicating that you suffered from gluten sensitivity? Mine indicated that I was not gluten sensitive so why cut out the goodies. Of course, I would in a heartbeat if I knew it would help. R u male or female??? N



gfgill said:

hi Neta

my symptoms have improved greatly - my main symptoms were fatigue, peripheral neuropathy in my feet, balance issues and brain issues of poor concentration/memory and underactve thyroid. I am not currently taking any thyroid medicines which Im amazed at! I am not so tired as I was and my balance is better - it was never too bad just a greater tendency to fall than most people, my concentration is so so much better but not perfect and may never be but it is improving still so maybe there is hope - I recently felt that I had made another 'jump' in improvement! My feet are so much better its wonderful - if I walk for a llong time then they get painful but with the right shoes I can wander about for hours, say at the coast! all in all the GF diet has been amazing and well worth swapping an eclair or a sandwich for much improved health!! Gill

18

hi Neta - Im female. I tested positive for gliadin antibodies so yes this confirmed my diagnosis. I understand that there is another test that can be used as well - it was in the latest edition of The Ataxian, I cant remember the name just now Im afraid!

If you havent been found positive for gluten sensitivity then I understand not going gluten free as there may be no point - I had a good motivation which makes a difference doesnt it. However some people Im told have found that they feel better or their symptoms improve on a GF diet even in the absence of antibodies or a positive blood test, so could be worth a months trial!

Gill

19

You are indeed lucky. Yes, I have read (here) that people who did not test positive for gluten sensitivity but still removed gluten from their diet, felt better. But I am wondering if this is not psychological. Nevertheless, a month is a good idea. I have tested positive for an antibody known as AB Nuclear Na2 (Adult) (dont ask me what that is) as well as anti-GAD. It is for this reason that I am taking the IVIg. I dont get The Ataxian. I asked twice about going gluten-free and I was told, each time, that the test proved negative and there was no point but who knows?

gfgill said:

hi Neta - Im female. I tested positive for gliadin antibodies so yes this confirmed my diagnosis. I understand that there is another test that can be used as well - it was in the latest edition of The Ataxian, I cant remember the name just now Im afraid!

If you havent been found positive for gluten sensitivity then I understand not going gluten free as there may be no point - I had a good motivation which makes a difference doesnt it. However some people Im told have found that they feel better or their symptoms improve on a GF diet even in the absence of antibodies or a positive blood test, so could be worth a months trial!

Gill

20

Neta, what is anti GAD?

The test which was shown in The Ataxian was from results published in the Journal Neurology by Prof Marios Hadjivassilliou in Sheffield - you might find that paper? The article in The Ataxian reads (part of it): 'patients with cerebellar ataxia of unknown cause are currently tested for gluten sensitivity using a blood test for antibodies called gliadins. If they test positive they are given a diagnosis of gluten ataxia and are recommended to go on a gluten free diat. Diagnosis is very important as this is one of the few treatable ataxias if diagnosed early enough. In this new study, the team in Sheffield and collaborators in Cardiff hypotehsisted that a different antibody against a brain enzyme called transglutaminase 6 (TG6) couldd be used as a diagnostic test for gluten ataxia. they found that a high roportion of those diagnosed with gluten ataxia in the traditional way also tested positive for TG6 antibodies (and as expected, the healthy controls tested negatively). In addition, a Finnish group showed that after one year on a gluten free diet the TG6 antibodies decreased in 11 out of 12 patients. These results show that the TG6 antibody test is a sensitive test for diagnosing gluten ataxia.

The researchers in Sheffield then also tested 65 patietns with cerebellar ataxia of unknown cause who were negative for the gliadin antibodies and thus would have had a negative diagnosis for gluten ataxia. They found that 21 (ie 32%) of these were positive for TG6. This suggests that the TG6 test might be more sensitive than the anti gliadin antibody test, and that the prevalence of people with gluten ataxia is higher than previously thought'.

Maybe the full article would be available on the Ataxia UK website or someone who recieves this by email could maybe forward it. Food for thought?

Gill