Gluten ataxia

[GlutenLadYorkshire]

Hi all I’m just wondering how you are diagnosed as having gluten ataxia, I currently have coeliac disease which was diagnosed about 5 Years ago, I didn’t follow a gluten free diet and about last I fell ill with balance issues slurred speech and an ear infection which improved in hospital and a couple of months after, now I don’t have any issues with balance or slurred speech, I’m not brilliant at the tandem walk but I think it’s just my posture, I have had a number of tests ct scan mri scan lumber puncher and various blood test which are all remarkable and show no problems, my mri showed no shrinkage of the Cerebrum not any damage, I go to a ataxia clinic in Sheffield next month and I’m very anxious and depressed in the worse case scenario my other problem is looking on the internet for symptoms it is a bit obsessive really.

Thanks in advance

[cocoa]

Sheffield is the best place for advise re. gluten ataxia.

I wish you well

[HarryB Administrator]

Hi Bally 1982

Thank you for your post.

Please try to resist looking at the internet for medical problems. There is a lot of duff information out there.

Try and look forward to your appointment at Sheffield. Think of it as an opportunity to get your questions answered by a world expert in ataxia. There is nobody better to give you answers to your questions about gluten ataxia than Professor Hadjivassilliou. Write down your questions before you go, even better as they pop into your head. There is nothing worse than coming out of the appointment and thinking 'oh, I wish I had asked that.'

I hope the appointment goes well and you get answers to your questions.

Best wishes

Harriet

[GlutenLadYorkshire in reply to HarryB]

Thanks, it’s a good idea about the questions and I feel very lucky to see a world expert, I know that he leads the way in neurological problems with ataxia and gluten related disease, thanks again for your reply.

[coat2003]

First thing first. I suffer from allergies but NOT GLUTEN...However my ma described to me her rather let's name it INTOLERANCE, not full blown allergy. Her symptoms worsen after eatin wheat bread, pasta basically carbs....Put in the mix milk and bread, staples, right and she feels uncomfortably bloated, as if a slow digestion...and it makes her uncomfy...There is ONLY ONE THING FOR IT. stop eating bread, drinking milk...and observe any changes...and MOST IMPORT. WRITE THEM DOWN...When one has a food allergy, keeping diary what you eat, is the best bet how to discover food allergens...and observe...

go on gluten free so called thins, Lidl sells them, more expensive and they work, even the taste is NOT WHAT IT USED TO BE, I once experimented,good 15 years ago, the bread crumbled, disintegrated, tasted more like a cake, a sponge...NOW A TRUE REVELATION. It stays in the shape...cannot fault it...Taste improved....

[GlutenLadYorkshire]

Gluten free food is awful, I like all the foods I can’t eat, I’d rather go without than eat gluten free bread, some of the food is ok, if I was diagnosed as a baby I wouldn’t know any difference and maybe I’d like it, but I have had normal foods and I used to enjoy it but unfortunately it makes me ill.

[coat2003]

that is all very interesting,how came the improvement? I am at the neurological clinic 2x a year and my specialist ALWAYS ASK ABOUT ANY CHANGES IN DIGESTION. I have been diagnosed with sca 2 ataxia, with a profound shrinkage of cerebellum end of 2017. Travelled to my birth place Slovakia with my walker, mainly to morally support my bro who has the same. but a milder form of it, awaiting the equiv. of PIP assessment there...My walking is more affected thaN HIS...He has the speech more slurred, but that's the language matter. the English is much kinder in pronunciation.I suppose the final confirmation is eating normal wheat products and go for a blood test for coeliac disease...I was on self-imposed gluten free, as kinder and the water easily absorbed, what I experienced 6months ago till now is a big weightloss (stress my husband of 18 yrs passed on.), when slim already shows more... Bloated feeling returned and water literally sucked up, constipated when run out gluten free....so defo going for the test, and gluten free is quite costly, special bread, pasta...need a prescription...Bought it all by now...let me know how it is now, how you're getting on?

[coat2003]

I quite like the taste of gluten free...Some people complain, but used to it as allergies to certain foods, so used to it by now...