Although i tested negative for gluten ataxia (I have "idiopathic" SCA), I am considering starting a gluten-free diet. Partly due to comments I have read on here. Quite a few people with ataxia, but not gluten ataxia, have reported only positive results after removing gluten from their diet.
Somebody suggested that I should think about drinking LycoLife (it's a gluten-free tomato & fruit drink which contains a "lycopene" supplement).
This was the first time that I'd heard about lycopene, so I did a wee bit of research, and found this article:
ncbi.nlm.nih.gov/pubmed/221...
In my case, this might be quite relevant. And I'm hoping that this might ring a few bells here:
I've always had stomach problems since I was a teenager. About 15 years ago, so prior to the onset of my ataxia symptoms, my GP tried to eradicate the helicobacter pylori in my stomach, using a specific drug (I forget the name of which) in conjunction with a variety of different antibiotics. The attempt ultimately failed (it is notoriously difficult to eradicate HP), so I now take a daily Lansoprazole tablet. This is a "protein pump inhibitor" that stops the production of too much stomach acid (as the HP produces lots on its own).
The fact that my symptoms appeared a few years after this may just be coincidental. And the lansoprazole/ataxia link was discounted at my very first GP consultation. But this was a GP who, at that time, new nothing of ataxia. So I'll speak to him again and the neurologist who eventually diagnosed my SCA - to see if it rings any bells.
Are there any other ataxia sufferers here, who have tested negative for gluten ataxia but who have adopted a gluten-free diet?
Iain
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Hi Iain yes friend originally tested negative for gluten but last year an apparently more refines test showed some sensitivity, rather than allergy to gluten. Her response was to go strictly gluten free and several months later says she already feels better for this. She did this not expecting a cure for her ataxia which in her case hasn't yet got a specific type but has liked finding something that helps her feel she can fight back a bit. To regain control . The benefits already have been feeling better, feeling more energy/ less fatigue which in turn have enabled her to execrcise more, so gaining more strength, so more able to do more so feeling better, more positive etc etc in a positive circle rather than a down ward spiral - of which there have been many in previous years. It's more expensive I would say and in our case has been easier for both of us to go gluten free to avoid the faffing of separating food areas etc - can't imagine trying this in a family setting! But infinitely worth it she says even if tests show it isn't affecting the ataxia it is something she will carry on with - personally am hoping it will show a slow down on the atrophy of the cerebellum, ideally a total halt would be the best .
Is there a name for this more specific gluten test? I'll look it up first, before I get in touch with GP (who arranges all tests). As he might just take blood samples and send them off for general gluten-intolerance testing otherwise. So I'd like to be able to insist that blood sample is for the new, more refined, test. And having the knowledge beforehand usually helps (he's great, but sometimes I get the feeling that he is learning about ataxia from me).
Hi Iain😊I had this newer test done at Newcastle Ataxia Centre, it was negative but I definitely have issues of some sort. Details relating to this test were printed in Issue 183 -Winter 2013 of The Ataxian. It was the result of a new study by Prof Marios Hadjivassilou, the team at Sheffield and researchers in Cardiff. Contact Sheffield Ataxia Centre, they should be able to advise you.
Excess acid has been a recurring problem for me for a long time. Before being diagnosed with SCA, I'd seen a Kinesiologist who told me I had a overgrowth of Candida Albicans and I was seriously concerned that I might have Heliobactor Pylori. I had an Endoscopy which was negative.
My main reason for seeing a Kinesiologist was ongoing disorientating symptoms that couldn't be solved by my GP. It got to the point where I sought help from a Cranial Osteopath, and a Chiropractor. Neither, I hasten to add were able to help.
I'm in danger of wandering off the point of the post here😏 So I'll just wish you well with your enquiry 😊xB
Thanks B. Sheffield it is then. I love going to see my GP forearmed with "proper" medical knowledge. The internet, in the eyes of some GPs, has made us all armchair doctors - so as soon as I say "internet", I can almost see his eyes rolling back in his skull
Hi Iain am hoping I haven't misled you, though a bit concerned I have - when I re -read the specialist's letter it suggests the word "test" is more about a newer, more refined interpretation of results using a more precise scale rather than a new way of testing the blood. This has been done as part of my friend's regular annual (sometimes bi-annual ) appointments to a specialist Ataxia Centre. She has virtually no direct contact with her G.P. re her Ataxia although all notes are obviously copied in to her GP. Do you attend an Ataxia Centre? When she was first diagnosed 9 years ago I found out about these via the internet (there was zero information from the first neurologist she saw locally) and she asked GP for a referral to the one in Sheffield ( the only other choice at the time was London - both quite a distance from home). This proved to be very very helpful in many ways. No she hasn't been cured but the support/advice/information has been and continues to be excellent. As wobblybee suggests it could well be worth contacting Prof Marios at Sheffield as this is his particular area of expertise within Ataxia.
Friend believes that being told she had a sensitivity to gluten was the spur to going gluten free and that without being told that she probably wouldn't have bothered trying to. Having done so she will continue to do so even if subsequent tests don't show any dramatic changes as she feels so much better in herself.
Thanks. I don't, yet, visit an Ataxia Centre. I've been quite lucky that my GP, even though he personally knows very little about ataxia, has referred me to a neurologist who seems to know quite a bit.
I'll contact the Ataxia Centre in Sheffield shortly.
Re gluten-free. It shouldn't be much of a change. I'm almost totally vegetarian now these days anyway (and totally vegetarian when I travel - which is quite a lot still). Gluten-free and travel might be a bit tricky though. But nothing's impossible - and all the anecdotal evidence I've heard, suggests that this might be a smart move. So is definitely worth trying.
I was diagnosed 5 years ago with late onset cerebellar ataxia and had 2 blood tests for gluten with showed up negative and it was only that I went to a kinesiologist who said she had just read a book about gluten and its negative impact especially on any brain related diseases so I went gluten free and it had a definite impact. Like you my doctor didn't know about ataxia and in fact when I went years before my diagnosis she told me she couldn't find anything wrong and to retrain my balance! It would seem that even some neurologists are sceptic about gluten ataxia - my initial MRI showed small white dots which the neurologist said he had never seen before but on the internet I discovered that's how gluten problems often show! I was and still am totally gluten free which is sometimes a pain and expensive but has been so worth it and given me some control. Look on the coeliac website and if you go abroad they have coeliac restaurant cards you can print off which has really helped and gluten free travelling never been a problem even in Italy!! - good luck - I read yesterday that you can lack certain vitamins going gluten free but haven't had a chance to look it up yet. There is an amazing website I have discovered through this forum called 'walkingwithataxia' - worth looking at and I only looked last week so haven't had a chance yet to go dancing - but we really miss our dance classes - I walk twice a day with my dogs and everyone in my ataxia group say my walking is really good - so muscle memory definitely works.
I have two friends who enjoy a gluten-free diet (on of whom is a bit of a "gluten-free fundamentalist"). So she'll keep me right with regards to vitamin supplements.
I would advise that you speak to your doctor before going on a gluten free diet Iain. I also have severe stomach problems. Initially I tested positive for helicobacter pylori and prescription meds soon alleviated it. I still have stomach problems but Emeprozole, Ranitadine and a low dose of Amitriptaline prescribed by doctor has helped me. I also have chronic constipation which is managed by taking Fibrogel and Laxido drinking sachets. I personally wouldn't go on any specific diets without consulting my doctor first.
Thanks Iain. Yes, I'll be share to check that he is OK with it. But if I can't find any good reason, then I doubt he'll be against it - so long as I make sure to maintain vitamin levels.
My neurologist pooh-poohed the idea of gluten ataxia. Apparently nobody can ever replicate the work done at Sheffield (I wondered why I couldn't find any papers from anybody else). That was great news for me as I could stop trying to live gluten-free.
If you've been taking PPIs for 15 years then there's a good chance that you have a vitamin B12 deficiency. One effect of that is sub-acute combined degeneration of the spinal cord - en.wikipedia.org/wiki/Subac... - which can result in ataxia.
B12 was actually one of the first, self-medicated, supplements that I took.
I was living in Mallorca when I first realised that "something wasn't quite right" balance-wise. I discovered that PPIs can also prevent the stomach from absorbing B12 - so I took a huge dose, followed by supplements for a while. It had no real effect, so I stopped the supplements.
I had all of my vitamin levels checked when docs were trying to find the cause of my "wobbliness". And all were fine. The vitamin tests were done a long time after my self-administered B12, so wouldn't have been influenced.
Is there a new test out that can specifically diagnose gluten ataxia? As far as I know, there is no true test for it. You can get Celiac testing done, but if the results come back negative, that doesn't necessarily mean you don't have a gluten problem. The true test is to go off of gluten and see if your symtoms improve and you feel better.
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