I'm after some opinions, hope you don't mind me asking.
My mum has just recently been diagnosed with motor neurone disease, the name has been banded about for a few months now but after a mri they confirmed it.
My mum is a coeliac, yet she still eats it like it isn't a problem, my parents act like it's just a food fad
As far as I'm aware, her consultants either do not know that she is a coeliac and if they do, they are probably assuming she is on a gluten free diet!
I have looked into it and read up on gluten ataxia, which sounds very like MND.
I'm very frustrated. Part of me is thinking, what if it's not MND? What if it's gluten damage? If she's a coeliac it MUST be still damaging her (the only symptoms when diagnosed she ever had was anemia/intestinal damage)
I'm not sure where to go, who to speak to. And if I should follow on my concerns? Am I just obsessing over something I'm hoping for? (Anything is better than the diagnosis of MND)
Your opinions would be appreciated,thank you xxx
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Lynsuk
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I am with you and your thoughts. I really do think you are onto something. Being a coeliac she will be LOW in B12 - which when the level is below 500 can become a neurological condition. Are Docs aware - absolutely no. They think if you are just in range all is fine. Please read the list of neurological signs and symptoms of low B12 in the link below. Also a website full of helpful information about B12. Look at the video under the heading Films - about the American Doctor who was diagnosed with an incurable neurological condition and was dying. It was actually LOW B12.
You may also need to look at her VitD levels - again misunderstood by GP's.
Of course the brain has more receptors for T3 than any other part of the body. T3 is the ACTIVE thyroid hormone needed in EVERY cell of the body so when low there is not enough to go around. GP's/Labs rarely test for the T3 if the TSH is in range. This is a huge problem and thousands of people are being diagnosed with other conditions.
Dr Datis Kharrazian covers Gluten issues and the brain in his book - Why Isn't My Brain Working ? I have read the book and return to it from time to time. Gluten molecules can penetrate the brain and cause inflammation - as mentioned in his book. He also has a website and you can sign up for his Newsletters.
I suffered ataxia - it could be damage to my spine caused by LOW B12. I have Hashimotos - Thyroid illness - so it could be that. I am now Gluten Free and have been for 3 years. My thyroid anti-bodies have reduced as a result - as the gut is healing. I have weekly injections of B12 - great improvement there. Thyroid anti-bodies can also cause problems in the brain
I am sure your intuitions are worth exploring and if you have a problem in getting B12 - VitD - thyroid correctly tested - then you could have them done privately through Blue Horizon - with Test Kits being sent to your home.
All these avenues are worth exploring as having optimal levels of all the things I have mentioned WILL improve her quality of her life - whatever the outcome. Low B12 and Low thyroid have been missed and people have received a Parkinsons diagnosis in the early stages. Low VitD can be the cause of MS .
I am not a medic - you can click onto my name and read my Profile and my bumpy journey to wellness.
Marz has, as usual given, you a good answer. As you yourself are b12d there is more than a chance that your mum is a sufferer as well as the confirmed celiac diagnosis.
The expert on gluten ataxia in the UK is Prof Hadjivassiliou, in Sheffield. This is one of his articles on the subject, which might be useful. It is apparently possible to have neurological problems without having low B 12.
Does your mum have follow up tests for her coeliac disease? It should show if she isn't following a gluten free diet. Perhaps get her to read the information on Coeliac UK on the effects of carrying on eating gluten? Gluten ataxia is not very common, conditions like osteoporosis are more likely.
I wasn't going to reply to this, other than to say I feel for you as it is a very difficult situation - I suspect many of the medical professionals will not discuss this with you as your mum is an adult and you are not next of kin.
But then I came across this: mndassociation.org/what-is-... which says that MRI scans cannot be used to diagnose MND, only to rule out other conditions which can mimic it. Sorry, I don't know whether that helps you or just makes the situation more confusing. Others on here have given you some excellent advice & I do think you're on to something - all those years of gluten must have had a huge detrimental effect.
I wish you luck as I've been in a similar situation years ago but I still vividly remember the frustration.
Hi Lynn. If what GFmum has posted is correct and the MRI cannot diagnose MND but only rule out other conditions then something else going on is a possibility. (Im sure that Ive read somewhere that there is a link with coeliac and MND btw).
Gluten ataxia causes symptoms like loss of balance, dizziness, falling down, slurred speech sometimes amongst other things.
Its sad that your mum doesnt understand how dangerous gluten is if you're sensitive to it. Would she go gluten free now if it would help with her symptoms? If it is GA then going gluten free could stop further progression but unlikely to improve symptoms at a late stage (although does in early stages).
We do have to remember that many doctors dont understand the autoimmune causes of ataxia (such as gluten ataxia) and in some cases wont believe in it even if they know about it! So this wont come into any differential diagnoses they are considering.
I think there are two things that might help you to work this out and these are reading up on the symptoms & signs of gluten ataxia - the work of prof marios Hadjivassiliou is the place to start - maybe try google scholar and his name and the Datis Kharazian book someone has mentioned below. Secondly read up on the symptoms & signs of MND and more importantly ask for an appointment to see the doctor who has diagnosed your mum, who can explain whether the diagnosis is really confirmed or just the best fit based on the evidence and whether gluten ataxia is a possibility. You could ask for a referral to one of the ataxia centres for assessment, preferably by Prof Marios!
I too agree that you are very likely on to something, especially if your mum isn't taking CD seriously. Before CD diagnosis I had experienced whole torso violent pain, and even when totally gluten free I had experienced severe anxiety, suicidal thoughts and widespread arthritic pains and a frozen shoulder. Which incidentally the doctor didn't for one moment believe was down to my diet. Now I am gluten free, grain free and processed sugar free the anxiety, arthritis and frozen shoulder have all gone. I read recently of a study that indicated some patients with early onset Alzheimers had improved, and in some instances gone into full remission as a result of a gluten free diet. I personally think much of the medical profession do not know very much about the effects that many of our foods can have on our health. A good healthy diet will go a long way to eliminating many of today's health problems. I'm sorry to say you are unlikely to get much help from the medical profession on this, but keep trying to persuade your mum, hopefully she will see some sense and try a healthier diet, after all, what has she got to lose by it? Good luck!
Just a quick one.
My mum had motor neurone disease and I have coeliac. The person you need to see is Prof Marios Hadjivassiliou at the Royal Hallamshire Hospital in Sheffield. He is the world expert on gluten ataxia and would I'm sure be very interested in hearing of your case or rather your mum's. He has my full family history and would I'm sure be willing to see you and your mum. My advice would be to contact secretary Jeanette Burrows at the hospital or one of the ataxia nurses who can advise on what to do. See if you can get an early cancellation and take notes so that you can explain by phone or email what the situation is so they can advise on what the best course of action needs to be. There are cases where I believe gluten ataxia has kind of mimicked MND, but if your consultants don't know about it then you need to do research on Prof Marios's work to take with you when you see them, but I would urge you to contact the Royal Hallamshire and the Prof and see if you can get to see him.
Hope this helps. Keep us posted.
Heres a very recent video that may be of help to you as a family.
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