Gluten Ataxia. Nottinghamshire Area

[lynnm]

I have Gluten ataxia and live in the Nottinghamshire area . I'm under The Royal Hallamshire Hospital Sheffield. I don't know anyone with it in this area .Is there anyone in the area that would like to communicate with me . I do not think the G.P understands the problems living with Gluten Ataxia , Balance, falls, fatigue, refluxs ect.

[Marz]

I am sorry to read about your ataxia. I am wondering if you have had your B12 tested and if you know the result. I too have ataxia and have improved since having weekly B12 injections and supplementing. I live in Crete. Your B12 needs to be around 1000 and not just bumping along the bottom of the range. Also if you do have it tested - also test the Ferritin - Folate - Iron - VitD.....

b12deficiency.info/signs-an...

Scroll down the above link to see the neurological effects of B12 deficiency. It is far more than a vitamin deficiency and what your Doctor does NOT know about B12 can harm you.

Also low thyroid will cause problems....so much is linked and health issues rarely stand alone.

There is an interesting on-line summit at the moment - about the gut micro-biome - called the Gut Microbiome Medicine Centre - 4 speakers a day for a week.

[Danslatete in reply to Marz]

Blimey it's like reading all of my symptoms over the last few years!

My b12 was deemed satisfactory but is way below the level you suggested. It was 265.

I was hoping that the change to Gf and Df would improve symptoms, which it has to a degree.

I had bloods taken again today as they are monitoring my anaemia and neutropenia and poor clotting.

[Marz in reply to Danslatete]

Am afraid Docs lack sufficient knowledge about B12 as they think it is just a vitamin. Any result under 500 can result in neurological symptoms and if left untreated can become irreversible. If you read the website I posted for you you will see that the range STARTS at 500 in Japan. They have lower levels of alzheimers and dementia. Also look at the heading Films on the Menu of the website - you will see that even Doctors are not immune. A very sad story/video that should be a lesson for us all.

I too have personal experience of spinal cord damage due to Low B12.

What type of Anaemia ? Folate - Iron - B12 ? They are all connected

What treatment are you on ? Sorry to ask so many questions but most Docs are not interested in getting to the root cause. Are you on treatment for the Reflux - as that can lower your B12 absorption - if it is a PPI and is so often linked with low thyroid. Have you had that tested ?

[lynnm in reply to Marz]

. Thanks for the post. I am on no medication at all !!! will ask for aB12. I agree Doctors are not up on Gluten Ataxia and its associated problems. I was on Thyroid tablets for most of my childhood. the last test 2 years ago showed board a line so not on tablets now. not on Refluxs meds just throw up for 2/3 days and can't hold even water down or food. then it subsides. will let you know the results of B12 nest when I get it.

best wishes

lynn

[Danslatete in reply to Marz]

I'm not on ppi now but was for a long time.

My WBC is low red count low, transferrin percentage is 7 which is a lot lower than the 22-25.

My ferritin is getting tested today along with the rest of tests done on FBC. I'm neutrapenic. I have a iron level of 6.

I've been takin iron tablets with vitamin c since June last year. I've been aneamic for 8 years, or taking iron.

My clotting takes longer too.

The lab had a question on the last tests asking if I was takin t4, but I've never heard of it.

I got a copy of my last results and will get a copy of this one too. I'm also going to ask for the full MOT blood results I had done by neurology in June.

My gran and mum both take b12 injections of tablets.

My doctor told me my results were satisfactory.

After my car accident back in 2004 they picked up thyroid nodules on a ct scan, I had them looked at under ultrasound but had no follow up in the last 12 years, so maybe I can ask about that.

Neurology wanted me seen by haematology but my gp was resistant back in November, maybe they'll change their mind if nothing changes for the better.

[Marz in reply to Danslatete]

I think you should have the thyroid checked - especially as you had nodules all those years ago. Possibly Hashimotos - which is auto-immune and would explain some of your blood test results. The tests you require are TSH - FT4 - FT3 - Anti-TPO and Anti-Tg. The last 2 are the anti-bodies. They rarely do anything more than the TSH - it saves money and keeps you ill so they can prescribe more medications - sadly. The FT3 is the most important test and rarely done due to costs - same with the anti-bodies.

T3 is the most ACTIVE of thyroid hormones and all 30 trillions cells in the body have a receptor for T3 - so when it is low - things begin to go wrong.

I am on the Thyroid UK forum here on HU - and there are over 36,000 people there. So there are daily stories of poor testing and diagnosis - also people being kept ill.

I live in Crete so things are better for me - thankfully.

Good luck with your appointment.....

If you click onto my name you can read my edited profile - just so you know what I am talking about

[Danslatete in reply to Marz]

Got my ferritin level, it's 5 which is low.

My WBC is low still my iron levels have dropped and they want to do another blood test on 21st.

They are finally referring me to haematology.

In fact everything is low or .1-.3 above lower limits.

My tsh is fine 1.73 so they said my thyroid is fine. I asked specifically about it and my nodules on the thyroid but it's been discounted as an issue.

Will get different iron tablets to take after next bloods if they have dropped or stay the same.

Am exhausted and fed up of catching everything going. Not felt well since last year in late May.

Thanks for giving me avenues of enquiry and sorry it takes so long to reply but bloods taken on 1/03 and first avail gp appt today.

Feeling frustrated and fed up!

[Marz in reply to Danslatete]

5 is VERY LOW - surely you will need an infusion of iron to help you. They often talk about Ferritin being around 80/90 on Thyroid UK - or at least halfway in the range. Folate works with B12 so no wonder that is low as I expect your Folate is low too.

As I thought they only tested the TSH which is only a small part of the thyroid story. Have a look at my earlier post for the tests you need. Could you have them done privately ? VitD ? - has that been tested ?

Really hope you soon get the treatment you deserve.

[Jacks in reply to Danslatete]

Your Hb, iron and ferritin levels are very low. Something is wrong. You must feel like hell. If you are coeliac ask for a clinic appt. Otherwise return to your GP, nobody can function properly on these levels. Don't let them tell you you aren't eating enough meat, folates etc.

[Danslatete in reply to Jacks]

Been back but they have finally refered ME to haematology at last!

[lynnm in reply to Danslatete]

Many thanks am going to ask for for a B12 test . I am on a GF and DF have been coeliac for 30 years plus and DF for 6 years plus . the ataixia has got worse over the last few years and I have had two falls since Dec. 2015. Yet before I only gad 3 falls in five years. My balance is getting worse on the left side with sponge feelings in my toes. also had a thyroid problems from a small child . but the last test a couple of years ago was border line so was not put back on tablets

[Marz in reply to lynnm]

Borderline is not good enough for you. PLEASE obtain copies of your results. I have Hashimotos - auto-immune thyroid disease - and you can have ataxia caused by that too. Did you have the full Thyroid Profile tested -TSH - FT4 - FT3 and the Anti-bodies - TPO and Tg. Just the TSH test is NOT enough and tells you VERY little. We have to read and learn and teach the Docs about both Thyroid and B12 - it is a scandal.

Click onto my name and you can read my Edited Profile - so you can see my bumpy road to wellness.....

You need to make a medical shopping list

[ThyroidThora]

Hi there,

I am sorry to hear about your condition. I've never heard of this before so I am unaware of a local support group but, there is a website called ataxia UK that might help.

Good luck

[lynnm in reply to ThyroidThora]

Many thanks for you posting . I will get my Doctor to check my B12 . My mum had pernicious anaemia and had injections like you . we had the same blood group A res. pos. and she died of stomach cancer. So thank you so much for your help . will get it checked out.

[Marz in reply to lynnm]

I would like to know your latest thyroid results too. Most of your problems can be linked to LOW thyroid. If you pop across to Thyroid UK - here on Health Unlocked and post your story - lots of people with be supportive and VERY knowledgeable. Don't just take my word for it.

Also insist not just on the B12 - but also the anti-bodies for PA - mention your Mum's history and make them take notice.... You could also post on the Pernicious Anaemia Society Forum - also here on HU. So many good people there too...

Sorry to be a pain - I am just passionate about getting to the root cause and joining up the dots....

[lynnm in reply to Marz]

your not a pain I want to get to the bottem of the problem too. I thank you for your help and concern.

[lynnm]

Thanks it was the ataxia uk that gave me this website.

[Kate37]

I don't have this diagnosis but developed a vast array of neurological symptoms including many of those listed on the link provided, especially ataxia, arm and leg weakness, temporary lower limb paralysis, parasthesia and reduced sensation. I was diagnosed with pots, eds and have had 2 years of ill health with persistent neurological symptoms. I saw a gastroenterologist last month with expertise in pots who put me on the FODMAP diet and recommended B12 supplements and gradually my neurological symptoms have improved over the last few weeks and I have started to feel like my old self. I am starting to wonder if it was a B12 deficiency that triggered this horrendous episode of ill health. These posts have been very informative and helpful. Thank you

[lynnm in reply to Kate37]

I am glad that you are feeling a lot better that is good news. we need to educate G.Ps . as well as getting the right tests done to eliminate wrong diagnosis.

[Galixie]

I just wanted to add a point about dietary sources of B12. It is only naturally available in meat and dairy sources. You mentioned that you are dairy free, and that eliminates a source of it in your diet, which makes it even more challenging to keep a normal level. Staying gluten free should relieve the gluten ataxia symptoms, not make them worse. But others are absolutely right that low B12 can cause ataxia too and you should definitely follow up on that. Just don't expect a lot of support from doctors on the B12 issue. Most are either under-informed or misinformed. They often look at B12 injections as just a placebo or they may think you have to show signs of macrocytic anemia before treatment is warranted. Btw, having iron deficiency anemia can obscure the signs of macrocytic anemia, so getting all your lab test result print outs with the lab's reference ranges is a must. Even the most well-intentioned doctors can miss something they weren't expecting to find.

I struggle with this myself because I also have gluten ataxia and low B12 and I also have to be gluten and dairy free (casein and whey sensitivities).

[callistodevi]

I'm looking into whether I've got gluten ataxia as I've had neurological symptoms for a couple of years, cd for 12 years. Tingling hands and legs, palpitations, brain fog, strange sensations in head, and more. Due an MRI scan on brain 14th March. I put a lot of these strange symptoms down to menopause or other hormonal changes (I'm 52). I'm wondering if going completely gf might help, ie nothing that says <20ppm. Codex wheat. Also I have been consuming stuff made in a factory where gluten is, 'may contain'. Bloods all normal according to GP. Apart from this have been careful with my gf diet and thought I was doing well as tummy seems ok. Having trouble stringing this post together with brain fog

[lynnm in reply to callistodevi]

I have been a coeliac for 30 + years the Gluten Ataxia has been about 7-8 years . the last two I have been under Sheffield Ataxia clinic . I hope your MRI goes well and you get the answers . Make sure they check your cerebellum balance area . it is the two parts that control balance , memory ect. I have tingling in hand and feet they also feel sponge. make sure you get good follow ups. G.Ps dont always understand. remember you can always ask to be for 2nd opinions. coeliac uk has a help line . and you donot have to be confirmed coeliac to talk to them or becoming a member anymore.

Good luck , have put the 14th march in my diary and will be thinking of you.

lynn

[callistodevi in reply to lynnm]

Thank you so much, Lynn, from what I've been reading, Sheffield is the place to be. Will keep you posted.

[lynnm in reply to callistodevi]

good luck any help I can be let me know . The main clinical nurse is Diane Friend an is very helpful. there telephone no. is 01142711900 the secretary is Janette Burrows tel. No. 10042712502

[callistodevi in reply to lynnm]

Thank you Lynn, X

[lynnm in reply to callistodevi]

you are so welcome they are the only ones I trust.with no help from my doctors of neurologist in my home town. get a referral up to Sheffield they have to give it to you can also if problems the CCG can do this for you . any help I can give email me

[Thurgolady]

Hello Lynn

Im not very near to you being in Yorkshire but also have gluten ataxia and under Marios. As this is a rare condition (or maybe just undiagnosed for many) its unlikely that you will have people very near to you with the same condition! I do know a few people across the country and the world who do have gluten ataxia though! Most people wont know what it is and cant seem to understand that a food (like gluten) can cause such serious symptoms as problems with balance and memory etc so I think you do need to find people who will understand and hopefully help - and you have made a good start as there are a few of us on Health Unlocked!

I was diagnosed over 5 years ago and am vastly improved in every way. The first thing I would say is that with gluten ataxia you need to be more strict than most coeliacs seem to be - Im concerned that your ataxia has got worse recently as it should be at least stabilised since going gluten free, though in my case, and many others' experience there is an improvement. I wonder if you're strict enough? I just mean could this be the reason that your symptoms are progressing and maybe you have to check your diet? I dont have anything that has a 'may contain' or 'produced in a factory that handles wheat' sort of warning. I also dont have oats even the gluten free variety. Is Marios investigating this, if not then he needs to be aware that its worsening so you can prevent further problems. As someone has suggested get in touch through Diane or Suzanne, the specialist ataxia nurses. In Sheffield there is a branch meeting of Ataxia UK at 11 am on the first Thursday of the month, at least one person there has gluten ataxia so might be worth going to that.

Could the balance problems be due to something else (as well as the gluten ataxia)? If you have neuropathy could this be causing you to fall for example?

Re your thyroid - it may be that you do still need some thyroid medication -Marios did tell me that it was likely that I would need to reduce my dose after going gluten free, which I did have to, but still need a small dose.

I havent found that Ataxia UK are very helpful re gluten ataxia to be honest but it might be useful to get on their mailing list and others may have found them helpful. Marios is now involved with them and they do seem to be better for that!

There are some useful 'you tubes' of Marios talking about ataxia and I found looking at his research papers very helpful, though they are not an easy read of course! Some of the books like Grain Brain by Dr David Perlmutter and Why isnt my brain working by Dr Datis Kharrazian have been really helpful. Also a UK website called Truly Gluten Free is very helpful.

Happy for you to message me,

Gill

[Thurgolady]

PS on the trulyglutenfree.co.uk site there is a review of the Gluten Summit - where all the worlds leaders in gluten related diseases (including Prof Marios Hadjivassiliou from Sheffield) presented. The site owner Micky Rose has condensed the results and this is very informative and its free too.

Gill

[lynnm]

many thanks I will look at the website . Marios is the best .God bless him

[humanbean]

I have (self-diagnosed) gluten ataxia. I'd been staggering a lot, very clumsy, bumping into walls, falling and tripping, for quite a few years and the problem was getting worse. I gave up gluten at the beginning of last year, not because of the staggering but because I have thyroid problems and many people in that situation find they feel better with a gluten-free diet.

I was really surprised to realise that I had got steadier on my feet, less clumsy, and I'm falling and tripping less, after being off gluten for a while. It was thanks to this that I worked out I had gluten ataxia.

A few months after I stopped eating gluten I decided to treat myself for B12 deficiency despite my serum B12 being at a perfectly healthy level. I had so many symptoms suggestive of B12 deficiency. I take 5000mcg methylcobalamin 5 days out of 7, and I take adenosylcobalamin the other 2 days a week. I avoid cyanocobalamin (which is in most cheap supplements) like the plague now.

Taking B12 reduced all my remaining symptoms of staggering and clumsiness etc, but I still have quite serious problems when I'm tired, walking in narrow or confined spaces, and when it's dark. I don't expect after all these years of problems that I will ever recover completely.

The good thing about B12 is that it isn't poisonous. Any excess will be expelled in urine. And having high levels is not poisonous either.

If any of this interests you, it is a good idea to start taking methylfolate a few days before taking methylcobalamin because B12 can't be metabolised without it. And read the Pernicious Anaemia Society forum (on this site) and the PA website too.

Another issue to be aware of is that some people get a kind of detox reaction to taking methylcobalamin and methylfolate. It can be quite distressing. I got severe spots including on my scalp, very bad eczema, and very severe mouth ulcers. These were not new problems for me, but they were much, much worse than usual. Over about 2 or 3 months they gradually wore off. I still have some mouth ulcers but they have returned to the level I was already used to. And my skin is so much better than it used to be before the B12.

Please note I'm just posting from my own personal experience. I'm not medically trained.

[Thurgolady in reply to humanbean]

Hello Humanbean - very interesting. Wondering if you have tried to get a diagnosis - some of the symptoms of gluten ataxia could also be a B12 deficiency but as you've responded to a gluten free diet could very well be gluten ataxia. You really could do with seeing a neurologist in case of future problems and testing for associated deficiencies. And these are potentially serious conditions so you should be having regular checks if that's possible.

[humanbean in reply to Thurgolady]

I'm afraid that my faith in the medical profession has vanished. I would much rather treat myself. Eating or not eating gluten is up to me, and I don't have to beg for permission from doctors to avoid gluten if I wish.

And in connection with the B12 issue, if I went to a doctor with my very high B12 results they would laugh their socks off at the suggestion I had a deficiency problem.

Although I really know very little about how B12 is metabolised I have worked out that there are stages in the process after it gets into serum and that it is possible to have antibodies to some of the substances involved in the process of absorbing B12.

I realise that I might not be making the most sensible decision I've ever made by not trying to get a diagnosis. But having been nearly killed by doctors several times because they think I'm a lying attention-seeker I'd prefer to treat myself. At least then I can treat myself if I think it is necessary, and I don't have to put up with being patronised and shouted at. I pay for my own blood testing once or twice a year too. So I keep tabs on my levels of some of the most important vitamins and minerals, and I supplement as necessary.

[lynnm in reply to humanbean]

good for you doctors don't understand . my mum had had pernicious anemia and I have gluten ataxia same blood group A.res pos as mum and have asked them to do a B12 plus anti bodies my doctor says not need ????????? had enough of doctors to apart from Sheffield Roya Hamamshire without them I would have given up 3 years ago.

[Thurgolady]

Actually Humanbean you sound like me!! I think when we have a rare condition that many doctors dont know about, or even know that it exists, then it makes you very jaundiced in your view of the medical profession! I totally get this and in many ways I feel the same, however there are good ones out there who specialise in such conditions as GA, e.g. the Sheffield Centre for Gluten Related Diseases and the work of Prof Marios Hadjivassiliou there - he is a world leading expert in Gluten Ataxia. It is this sort of specialist care that may be helpful - having regular brain MRIs etc. That said I respect where you're coming from and if you've had bad experiences then its understandable. Vitamin E is also something to be checked as this can often be low in GA pre GF diet. Do check out the literature on gluten ataxia so you have as much information as possible to look after yourself. I also recommend that you look into the Low Dose Naltrexone which is very helpful for autoimmune conditions as well as many others including cancers (LDN Research Trust).

[pennypoop]

Hi Lynn,, 

I have unknown ataxia with gastro probs. I'm in Notts area so we could communicate if you want? What area do u live? Do u go to the Notts meetings? Pennypoop

[lynnm in reply to pennypoop]

Hi penny . I live in Radcliffe on Trent . I would like to communicate with you.I have not found the meeting place and time of the Notts  group yet. will look into it. Let me know how you want to communicate ? Email ?, Phone ?  

[Penel in reply to lynnm]

You can message privately on this site, if that's any help. Click on your picture and select 'messages'.

[Penel in reply to Penel]

Sorry, should have said "click on the profile of the person you want to message".

[pennypoop]

I have trouble hearing on the phone so maybe Facebook? Are u on there? If u let me know yr name I'll send a friend request.

[Jedboy1]

Hi Lynnette.

I have not been diagnosed with it but I know I have problems. I started my coeliac symptoms back in 1986 but was fobbed off with acid heartburn for years. The symptoms got gradually worse until a spike 10 years ago at the age of 50.

Been gf since but still get heartburn occasionally. My coordination is not as good and I go through periods of walking like i’m tipsy. I often drop my keys etc and get brain fog now and again.

I don’t have much faith that the drs will do much more other than stating the obvious of stay away from gluten.

I just carry on and try to ignore the strange symptoms I still get. I also get the shakes when hungry and my legs and arms tremble inside after exercise, that’s been happening since I was 30.

good luck