Gluten Free: I av just been advised to go on a... - Ataxia UK

Ataxia UK

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Gluten Free

claire01 profile image
claire01
β€’10 Replies

I av just been advised to go on a strict gluten free diet, I know it won't be a overnight miracle but have any fellow Ataxia seen any positive outcomes over time doing a gluten free diet

Thanking you 😊

10 Replies
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xray25 profile image
xray25

Hi claire01, I have been on it a few months now its not as bad as you think there are alot of products on the main shelves that she gluton free without going to gluten free or free from Isle,just check the ingredients on the back or download an app to scan, when you been doing a bit you find what you can and can't have, o think hardest is bread I don't like at all , although I don't eat alot best is genius or thins, also ready maid yorkshires abit hard I have tried making with no success, I am about to try packet mix,otherwise I am not finding tobad

Cupcake12345 profile image
Cupcake12345

I was put on a gluten free diet December 2021, you have to be on it 12-18 months to see a physical difference but doctors can see the blood antibodies go down soon after starting. I would say I have not deteriorated for six months, but cannot attribute that to the diet as I was also put on immuno suppressants.

It was not that hard for me to be gluten free as my daughter has been for years. The worst food for me is pizza as most bases taste horrible to me. The best bread I think is Warburtons, especially their sourdough. Followed by genius. Gluten-free bread, always falls apart easily.

Piero profile image
Piero in reply to Cupcake12345

I do try to avoid foods with a gluten content. However I find it difficult to assess the difference it makes...... thats the problem.

Cupcake12345 profile image
Cupcake12345 in reply to Piero

as I said it takes 12-18 months of strict dieting to feel a physical impact. I too used to avoid foods but it has to be really strict according to my neurologist. If no serious improvement is noted you may then be put on immunosuppressants like me.

Cupcake12345 profile image
Cupcake12345 in reply to Cupcake12345

I see Professor Hadjivassiliou in Sheffield for this.

claire01 profile image
claire01 in reply to Cupcake12345

Hi Cupcake1234 I am also under Professor Hadjivassilou so I know I am in good hands, he's the main man πŸ‘

pinjem profile image
pinjem

Yes, dramatically better almost straight away then very slow improvement then stopped. Buy Becky Excell's books for amazing GF recipes. I cannot recommend them enough. Eating pastry and it is delicious, for the first time in years (I can't have shop bought GF products usually as I seem to have another ingredient problem as well)

coat2003 profile image
coat2003

i cannot say, but my neorologiust kept asking, are you on a gluten free diet?i eat most nthings, and was tested if gluten allergy.the FOOD AINT CHEAP....a bit daunting and scarry, depends which sca if any one suffers from?

penelope2 profile image
penelope2

Yes I have been GF for over 2 years now and knew within a few days that I was doing the right thing. You do need to be really strict though, read labels, watch cross contamination even in your own home. Coeliac UK website is informative so is Gluten Free Gorillas" on HU.Also I am dairy free so.this is a very restrictive diet and difficult. There is a private blood test "cyrex" which can pick up other cross reactive foods which I had, dairy, rice and buckwheat were picked up

Rice is in most GF foods so this is awkward too. A nutritional therapist guided me through the process. Not cheap but well worth it.

I have now stabilised, still have good and bad days but very pleased with the results. Take care.

claire01 profile image
claire01

Update.... I have now been GF since 1st January I know it's only a short time but feel so much better in myself ie. Bloating, headaches, tiredness, skin itching all gone so definitely belive its a positive. The only down fall is missing bread and is expensive but worth it 😊

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