I have ataxia telangiectasia would stem cell therapy help even though I would have to go to panama to get it
Canāt answer you about stem cell. China advertised same years ago and it did not work except to take a lot of money from the patients. In fact, caused tumors in the body. Be careful!
As far as I know, there is no current cure.
You need to have a serious discussion with your Neurologist before deciding about Stem Cell Therapy.
Currentlyā¦it is not a viable therapy for any kind of ataxia.
āSince allogenic hematopoietic stem cell (HSC) transplantation improved disease outcome, gene therapy based on autologous HSCs is an alternative promising concept. However, due to the large cDNA of ATM (9.2 kb), efficient packaging of retroviral particles and sufficient transduction of HSCs remains challenging.ā
I have being experiencing a lot of ābloatingā recently and had bladder scan which is ok for my age. Whilst waiting to discuss it with my GP I wondered if it could be Gluten Ataxia I have?
I put myself on a Gluten free diet for two weeks prior to GP appointment .
It hasnāt made any difference yet but the up side means that I have lost a few pounds! Doctor hasnāt heard of Gluten Ataxia but is happy for me to continue on new eating regime as I am if I can continue to lose weight gradually!
Is anyone else having the same problem please?
A friend of mine has a Gluten sensitivity also but not Ataxia. There are lots of food available for Gluten sensitivity at decent prices. This was not always true. From what I read from the āexpertsā it takes at least six weeks to see results from Gluten Ataxia if you have it. However, weight loss is just one of the pluses.
Most doctors know nothing about the illness Ataxia.
True about doctors but I spoke to mine when I was first diagnosed and felt he was very supporttive. He was very straightforward- said there is no cure - enjoy what you can whilst you can.Simple advice but Iām doing my very best - difficult at times to follow it 
Iām finding my diagnosis harder to deal with on a day to day basis.
Initially it was vision problems that caused me most anxietyā¦theyāre still there but overall itās disorientation when Iām on my feet. This puts me off moving around ā¦and has a knock-on effect making mobility definitely worse because of lack of exercise.
Years agoā¦I had the test ā¦for Gluten Ataxia, it was negative butā¦I think Iām āgluten sensitiveāā¦I do experience bloating and discomfort if I overdo this type of food.
I was initially diagnosed with Temporal Lobe Epilepsyā¦because of DeJa Vu episodes and a seizure in my sleep. Iām not on medication butā¦I sometimes wonder how much āoverlapā there is with Neurological diagnoses anyway. (not related to bloating etc).
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I have had grand mal epilepsy since I was 18 and still take the tablets! Its no problem tho. I sometimes wonder if the ataxia was cause by long-term use of Epilim which I no longer take- who knows?
I read in this months Attaxia magazine
that Prof. Hadjivassiliou at Sheffield is doing research into Gluten Ataxia and am tempted to volunteer BUT with no transport - (hospital transport!?)
Whoops it sent before Iād done!
And a husband with Altzimers theres a lot of pros and cons to deal with.
I would certainly like to take part in the trial BUT?
Although most doctors know nothing about Ataxia the illness doesnāt mean that they arenāt sympathetic. They do know about the symptom ataxia. My suggestion is to continue with the Gluten Free diet as long as it doesnāt hurt you and it works in your favor. Good luck trying to get in the test. Keep us informed.
Itās possibleā¦your Neurologist could liase with Prof Hadjivassilou
re this testā¦if you donāt already attend one of the Ataxia Centres listed in the linkā¦
I copied this because the direct link failed. But you can click on it direct ā¦from the May issue you mentioned.
Improving diagnosis and management of Gluten ataxia
Ataxia UK, Coeliac UK, and the Sheffield Hospitals Charity have awarded funding to Professor Marios
Hadjivassiliou and colleagues at the Sheffield Ataxia Centre, for a research project to help improve
the diagnosis and management of gluten ataxia.
The project aims to allow the referral of any patient
with progressive ataxia without a diagnosis, to be tested with the appropriate blood markers available
in clinical practice in Sheffield.
If you have had tests to rule out other types of ataxias and still do not have a diagnosis of the cause of
your ataxia, you can be referred to the Sheffield Ataxia Centre to be tested for gluten ataxia.
If you are diagnosed with gluten ataxia, you can take part in the study, where you will follow a strict gluten-free
diet.
Participants will then be followed up after one year to assess the impact of the gluten-free diet.
If you are eligible to take part in this study and attend one of the following ataxia centresā¦( listed on the direct link)
You can be referred to the study via the below contacts:
Oxford: email Professor Andrea Nemeth on andrea.nemeth@ndcn.ox.ac.uk
London: email Professor Paola Giunti on p.giunti@ucl.ac.uk
Sheffield: email Dr. Priya Shanmugarajah on p.d.shanmugarajah@sheffield.ac.uk
Manchester: email Dr. John Ealing on John.ealing@nca.nhs.uk
Romford: email Dr. Rajith de Silva on rdesilva@nhs.net
If you do not attend any of the above sites, your neurologist can refer you directly to Prof Marios
Hadjivassiliou by emailing m.hadjivassiliou@sheffield.ac.uk.
Many thanks. Yes I read that too . I have just phoned my consultantās secretary who isnāt available today so Iāll try again later. It would be good to try and do something to help find a cure! Donāt know whether I will be a suitable candidate but I will see.
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