? Gluten Ataxia after 10 + years. Is GF diet wor... - Ataxia UK

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? Gluten Ataxia after 10 + years. Is GF diet worth it?

jonbon profile image
24 Replies

Hi all, I have have suffered with ataxia for over 10 years & last year was advised to start a strict GF diet. After 10 months I haven't noticed any improvement, in fact I would say I'm worse!! Has anyone else tried a GF diet after being diagnosed for so long? Did you see any positive results? Im a bit fed up of it now, is it worth it after all this time!?

Thankyou in advance😘 X

24 Replies
wobblybee profile image
wobblybee

🤔 Have you had testing/investigations for Gluten Ataxia

jonbon profile image
jonbon in reply to wobblybee

Hi Wobblybee, I have been seeing Prof H at Sheffield for years. The old test wasn't positive for gluten but the new one shows gluten sensitivity in my immune system. I will persevere!! Thanks for your reply. Nicky x

Ostap profile image
Ostap

Hi, who advised you? Did a blood test actually confirm gluten intolerance?

jonbon profile image
jonbon in reply to Ostap

Hi, yes it was Prof H at Hallamshire. I had the new blood tests that showed that my immune system is reacting to gluten. I think bad days make me feel worse about it. I will persevere!! Thankyou for your reply x

DuncCam79 profile image
DuncCam79

I have been diagnosed with gluten ataxia (based on bloods, lumbar puncture and brain MRI/spectroscopy) after suffering from the symptoms of ataxia for over 15 years which has left me in a wheelchair (I also had lots of gastric studies but there isn’t any evidence of gluten-induced gastrointestinal problems). I have followed a strict gluten free diet for 18 months and the serology has shown it had worked in terms of clearing the antibodies and there has been some improvement in my brain chemistry. My neurologist warned me though that after being symptomatic for over a decade, I might only see slight improvement or none at all BUT that being GF would slow down any progression of the disease. And that’s exactly what I have found. I haven’t seen any improvement but things have only very slowly worsened compared to the previous couple of years so I totally believe a GF diet is worth it. I’d try and get a formal diagnosis though, it’s a very involved process and took several months (and was unpleasant at times) but I’m happy I have a diagnosis now. Hope that helps.

jonbon profile image
jonbon in reply to DuncCam79

Yes it helps a lot thankyou. Since writing my post I have talked at length with the ataxia nurse at Sheffield Hallamshire and am feeling more positive about everything and your reply has reinforced that. Thankyou for taking the time to reply to me. Take care Nicky x

DuncCam79 profile image
DuncCam79 in reply to jonbon

No worries Nicky! The ataxia nurses at the Hallamshire are awesome, they have helped me loads too. It’s hard when you see all of these posts of a GF diet being a miraculous cure for gluten ataxia and for most people it’s just not true. I’m holding on to going GF slowing everything down and I’m confident it will. Take care, Dunc

Cupcake12345 profile image
Cupcake12345

GF diets take 12-18 months to work, I have been on one for 10 months too and also frustrated. I’ve also been put on mycophenolate motefil high dose and it takes two months to have an impact, I started in May. Both these were for gluten ataxia but I have always believed it was PACA. The medication has made a difference and has slowed progression significantly. Ataxia was diagnosed 6 years ago and progressed fast, to the point I’ve been in a wheelchair for three years. Im seeing two neurologists and even though I live in London I see Professor Hadjivassiliou in Sheffield, worth a visit, the top neurologists in London couldn’t work it out and he has done more tests and started treatment within a year.

jonbon profile image
jonbon in reply to Cupcake12345

Thankyou Cupcake12345, I too see Prof H and it was his perseverance that resulted in my having the new blood test that showed that my immune system is reacting to gluten. I have spoken with the ataxia nurse and feel a little more positive. I will continue with the GF diet. I think bad days & exhaustion make everything seem so much worse. Thankyou for replying & I wish you well xxx

wobblybee profile image
wobblybee

It must be disheartening ..I know how strict the diet is

🤔Did you know..it’s not only diet you need to watch. It’s sounds strange but.. traces of ‘gluten’ can be present in other things in daily use..for example beauty products and medication..

I have seen other people mention a similar outcome re the diet. But..because everybody responds differently it’s essential to find out for yourself.

You’re definitely in good hands at Sheffield 🙂

badgut.org/information-cent...

celiac.org/gluten-free-livi...

Maldrakes profile image
Maldrakes

What is the new blood test that you’re referring to?

jonbon profile image
jonbon in reply to Maldrakes

Hi Maldrakes, I will hunt out my letter & let you know x

jonbon profile image
jonbon in reply to jonbon

Hi Maldrakes, I can't find the name of the test. But I know that its a new blood test that shows if there is gluten sensitivity resulting in neurological manifestation. I had the old test & gastroscopy years ago and Coeliac disease wasn't detected. Hope this is some help. Take care Nicky x

cocoa profile image
cocoa

I have not had this test but am interested.

I have had the old test a couple of times, which came back negative. I was also told that the test is not reliable.

I decided to go gluten free regardless. Would I have to be eating gluten to undergo this test and get a good result?

jonbon profile image
jonbon in reply to cocoa

Hi Cocoa, I too had all the old investigations & nothing showed up, but I had this new blood test last year & it was positive for gluten sensitivity on my immune system. And yes I was /had to eat a normal gluten filled diet. Hope this helps. Nicky x

cocoa profile image
cocoa

Was this test done at Sheffield or GP surgery?

Although I long for a sandwich and some cake, not sure I fancy going through the suffering again.

jonbon profile image
jonbon in reply to cocoa

It was done at Sheffield xx

penelope2 profile image
penelope2

Hi jonbon. I am sorry that the gf diet isn't helping you. I too am with Professor Hadjivassiliou at Sheffield. When i first saw him earlier this year i had been on a gf diet for nearly 2 years and he warned me that antibodies might not show up. They didn't and i was not prepared to eat gluten again for the test which he understood.

When i first put myself on this gf diet the stability of ataxia symptoms and slowing the progression was my goal. This has worked, it took a long time and Coealic UK is a good site to understand about cross contamination etc. Everyone you live with has to take these restrictions on board too. And yes it is a right flaff.

After gf for about a year i saw a knowledgeable nutritional therapist who fully understood the effect gliadin has and had a private blood test. This came back positive for dairy and rice. So now df as well. Still the ataxia has not reversed significantly but it is stable now.

My diet is very restrictive and at times i get fed up but it is worth it. Brain fog, pains in my legs, gut problems, fatigue and neuropathy is so much better. My age is against me though.

Advice to you and others is, try it, go gf and your body will tell you if this is the right way to go.

I think i have irreversible damage but the diet i am on will stop the progression. Just a point about supplements, which the NHS has little knowledge of.

Our bodies probably need quite a bit of help to heal and keep going. The more high quality online, not on the supermarket shelves, provide advice and talking to one of the nutritionists might help with choice of the ones you need.

Good luck

jonbon profile image
jonbon in reply to penelope2

Thankyou so much for your very informative reply Penelope. I have taken your advice on board. Since posting my original question I have had indepth talks with the Ataxia nurse at Sheffield & with my GP, both are very supportive & I am feeling more positive about carrying on with the GF diet. The responses I have received from this site have helped me greatly. Thankyou again & I wish you well too. Nicky x

Jimbob7492 profile image
Jimbob7492

Hi Jonbon I to have been on GF diet for just over a year, with little or no improvement, but `I figure it is worth the ‘faff’ with the potential benefit, maybe, possibly. Stick with it i do not think it will harm you. Take care Regards James

jonbon profile image
jonbon in reply to Jimbob7492

Thankyou James, I will persevere!! Nickyx

rideabike profile image
rideabike

Hi Jon,

I wasn't diagnosed with gluten ataxia (idiopathic) but have to be on a GF diet because I don't digest it without a lot of pain and suffering (over 7 years on it). The diet works for me. If you haven't been bothered by gluten I'm wondering why he's asking you to do it because if your gut is being affected you should definitely be feeling it. On the other hand, with eating a meat, vegetable and GF grain (lots of oats!) diet I don't miss a thing...except bread that I learned to make myself. The other thing that helps me is lots of B vitamins. B12, B6, B1- 500mg. esp. They give me energy. Ataxia causes ringing in my ears that goes away with the B's in my system. Also the wobbly walk is better with less dizziness. Don't have a clue why. I

jonbon profile image
jonbon in reply to rideabike

Thankyou for your reply rideabike. Some good advice, will definitely look into the B vitamins. Take care Nickyx

2hot profile image
2hot

I have only just been diagnosed but about 10 years ago had to go gluten free because the symptoms of eating gluten were awful. I thought I was going to die after eating a panini in Rome once. It did help going gluten free and after a while my symptoms lessened. I started to get a bit complacent after a while and the symptoms came back so I am still very careful with what I eat. I make bread from spelt flour now because gf bread is disgusting, and as long as I eat it in moderation I am ok. I hope this helps.

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