Reversing gluten Ataxia

[KiwiBob]

Does anyone know how long you can have gluten Ataxia before it cannot be reversed ?

[wobblybee]

🤔 As far as I know by talking with people who are already diagnosed, it’s not really a case of reversing it..it’s a case of controlling it. And in turn, this can reflect well on ataxia symptoms. Yeast and gluten are the main culprits, but some people find they have other specific triggers. Have you had a firm diagnosis yourself 🤔

[KiwiBob in reply to wobblybee]

Going to Sheffield Ataxia Center at the end of October.

[wobblybee in reply to KiwiBob]

🙂You’ll be in very good hands there. Prof Marios Hadjavassilou is a world authority on Gluten Ataxia.

[pinjem in reply to wobblybee]

Wobblybee, I didn't know about yeast, is this recognised at Sheffield ? (Some other foods give me symptoms but I am told they do not affect the anti GAD reading) Kiwibob, Gluten can affect the brain and although any physical damage cannot be undone, your symptoms may recede, as many of mine have. Some people make a complete recovery. Mine was concealed for some years I now know.

[KiwiBob in reply to pinjem]

When I am baking bread I use gluten free yeast.

Been on a gluten free diet for about a year now.

In the last week an half I have had less symptoms but this has happened before. Then it knocks me for six.

[pinjem in reply to KiwiBob]

Baking powder can have gluten in it, check it if you use it? I buy yeast and baking powder from Pure Gluten free, (part of innovative solutions) they have a drop down menu with each ingredient showing what is in it- so I can avoid what I need to, it is free p and p after £30 spend. This next order I'll get more yeast as that is what I run out of first. Where do you buy your yeast, please, I have to use fast acting with the flour I use?

[KiwiBob in reply to pinjem]

Free from section in Tesco for baking powder etc. I get my gluten free bread mix’s as part of my proscription from the chemist.

[wobblybee in reply to pinjem]

🤔 I don’t know if this mentioned at Sheffield, but it’s something I keep to a minimum myself having had problems with Candidiasis in the past. This condition can effect both men and women, and can even cause Neurological symptoms.

Remember, the symptoms of gluten sensitivity and yeast infections overlap greatly, which is why yeast overgrowth & gluten sensitivity share the many of the same symptoms – muscle pain and inflammation, fatigue, and memory loss, skin rashes, headaches, and symptoms of IBS. Yeast can also contribute to a leaky gut.

glutenfreesociety.org › ...

[KiwiBob in reply to wobblybee]

My memory is very bad. I also get very confused when trying to prepare and cook food. I get mixed up and cannot do it.

How much of a normal life do you have when keeping to minimum ?

[wobblybee in reply to KiwiBob]

🙂 Bob, believe it or not, I can have a recipe in front of me, ingredients spread out, and still forget/overlook something 🥴😂 But from what I’ve read of other people’s experiences this is not uncommon 😉

There’s no denying day to day life will undoubtably change, inevitably adjustments need to be made to cope with challenges, and the goalposts may have to be moved several times 🙂

Hopefully we learn to adapt, and create a different ‘normal’ that can have its own rewards 🙂

[KiwiBob in reply to wobblybee]

Another thing that affects me is my speaking. Normal talking is ok but bigger words like adrenaline etc I cannot say.

[wobblybee in reply to KiwiBob]

🙂Bob, you should listen to my version of Hippopotamus 😉

[pinjem in reply to KiwiBob]

I need help but have adapted well to a new diet, I hadn't eaten bread for years as I felt it was 'poison' without knowing why. There are zillions of gluten free meals, I bulk cook. I would google gluten free recipes if I wanted help? I use the American test kitchen cookbook 2 to make bread and flour, I can avoid the things that affect me, yeast, I thought, used to give me migraines, but it was probably gluten mostly. I am more capable now of doing things, immediate change after giving up gluten, and incredibly slow progress since then, nearly 2 years ago, but improvement it is and I am very different now. I cannot do much and need to focus on what I do or I may leave an ingredient out, or simply stumble, or cut/burn myself through it happens far less frequently now. Take time, bulk cook, buy potatoes that only need cutting, not peeling, freeze what you don't eat, even leftovers so you have something to eat if you feel too rough to do anything. I do sometimes tick each stage as I do it and then re read as it is difficult! Be kind to yourself, try when you can, eat easy food when you can't- I eat a lot of bananas! And stick to gluten free? I have a PIP payment which means I can buy veg that is easy to prepare but a bit more expensive, it makes it all easier.

[KiwiBob in reply to pinjem]

I use to cook all the time, spicy foods, curry’s etc. Most of the time I find it difficult. I get confused and mixed up but still force my self cook.

[pinjem in reply to KiwiBob]

My friend showed me how to make Parsi Dansak- I make enough for 12 meals in one go, and in a way, you can't go too far wrong? The flavour may decrease if frozen for a while, not sure about that yet, it gets eaten quickly, lovely comfort nourishment.

[Legs-alive in reply to pinjem]

Professor at the Sheffield ataxia clinic - Marios Hadjivillasiousis is the first one who made the connection between gut & brain & foundered the term ‘gluten ataxia’

[pinjem in reply to Legs-alive]

If I had not found and just about managed to read his papers online at the end of 2017, I doubt I'd be able to see this or respond or think much at all by now, deterioration was so rapid. I saw Proff Hadjivassiliou a year later, should have asked for referral straight away, I did have a lovely local neurologist who did his best but had no experience of gluten ataxia and implications, I am hoping word gets out and gluten ataxia is recognised. It is a huge relief to be understood and supported, even if any treatment other than complete diet control is on hold at the moment.

[KiwiBob in reply to pinjem]

I am very stressed right now. My job is on the line. I have been turned down for medical retirement. I have put an appeal in and ask for them to put the appeal on hold until I return from Sheffield.

My symptoms are very low right now. Have been for about 5 days. I don’t know if this is due to stress or I am going through a good spell. This happens about twice a year.

[pinjem in reply to KiwiBob]

Very sorry to hear about the job. Change and uncertainty can be horrible. I really do not know about this but wonder if there is someone to help you? Can you continue on sick leave? It might be the whole forum here may have information about choices about your work, if you felt you needed any more input? I wonder if you wrote or emailed Sheffield and said you were asking for medical retirement if it might help how your first session might go? I had a summary, it might be a summary could be geared more towards this. I am only speculating! Cooler weather helps me, I am 'good' too at the moment. Ataxia can be unpredictable and I have found mine has changed at times for no reason that I can find.

[KiwiBob in reply to pinjem]

My biggest fear is turning up at Sheffield with little or no symptoms. I can be like that sometimes.

[cocoa in reply to KiwiBob]

Write everything down before you go …. I always do … give him a copy and then he will know how you are on your worst days.

Good luck with your appointment and for the future.

[KiwiBob in reply to cocoa]

Thankyou

[pinjem in reply to KiwiBob]

Cocoa's idea is a really good one, also, he is very experienced, you shouldn't worry. I wrote masses down about how I felt I had changed or progressed or stayed the same and he took it and read it! I'd never have remembered everything.