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Hi I'm wondering if anybody suffers from gluten ataxia or has bladder pain caused by wheat or gluten intolerance? I been suffering with bladder pain and for the last 18 months been in a wheelchair and have a number of other neurological symptoms including leaky gut syndrome meaning I can eat very little without having a reaction! I have cut out all gluten wheat and dairy for 5 months with some improvements. But the Doctors don't seem to be able to offer any help or understanding and I've felt very alone and isolated while struggling to get by, I would dearly love a friend who might understand what I'm going through or maybe able to offer some help or advice maybe find a doctor in my area who can help me thanks Paula x

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  • One of the specialists on gluten ataxia in the U.K. Is in Sheffield.

    sheffield.ac.uk/news/nr/glu...

    You can use the search box on the top right of this page to find old posts on the subject. One piece of advice is to get your B12 levels checked.

    You may be able to help heal your insides by increasing prebiotic foods and by taking some good quality probiotics. Have a look at gut health and gut bacteria.

    Good luck with sorting this out.

  • Thanks for your response, I been trying to get a referral to Sheffield since last August but my gp is hopeless! Keeps saying its done but Sheffield haven't had it a receptionist say they can't find it and when I see her she says she'll do it and then doesn't I don't know what to do! Thanks for advice on probiotic but my body's doesn't seem to except them and I react to it. I'm going to request B12 levels check today. Thanks again and hope your well.

  • Hi gravener6 I too suffer from neurological problems and gluten and dairy sensitivity (as do my children) .

    Could you tell me how you got a diagnosis of leaky gut syndrome? I believe that's what causes my symptoms due to lots of antibiotics and a few bowel infections. When I am poorly I can only tolerate pureed vegetables that's it!

  • Hi muschi2010

    Thanks for your response, and oh gosh do i sympathise when I was at my worst it was brockali runner beans kale and chicken for breakfast dinner and tea! And I really didn't think I was going to make it and to be honest not sure I wanted to! It's been a tremendous struggle! To answer your question I found a local lady who is a nutritional therapist and she arranged the tests to cares laboratories based in America I had to pay in fact all the money we had but it's definitely worth looking into it gave me a starting place. Not had any joy with the nhs even when I went to 6 and 1/2 stone and I was begging for help! Have you had much help from GPS or neurologists I don't find they even acknowledge the link between gluten wheat and nurological problems, I been trying to get my gp to send me to Sheffield since August last year she keeps saying she's done it but no one can find any letter she's supposed to have done and I don't know what else to do! Id be grateful to hear your experiences and how you cope thanks x

  • Sorry it's Cyrex laboratoriesin American! Spell check trying to help me out lol.

  • I suffered with cystitis all the time until I was diagnosed with coeliac disease. When I went gluten free it went away.

  • Hi violetkathy thanks for your reply I'm glad you were able to clear your cystitis up 😊 mine has improved a bit but mine is interstitial cystitis which is where the lining of your bladder completely goes so everything you eat and drink causes dibelatating pain 😩 apparently well documented due to gluten wheat dairy and leaky gut syndrome! But took me a little over 4 years to find out.

  • Hello I was diagnosed with Gluten Ataxia 4 years ago and am one of the fortunate ones who live in Sheffield ,so the Proff is my local specialist ! He is very busy as people ask to be referred from all over the country . I've been gluten free for over 2 yrs now and my last 2 brain scans have shown the GF diet is working . I have Cerebellar atrophy (brain wasting ) caused by gluten .I do get pain in my bladder and find it very difficult to carry a full one . I do not leak I just get bad pain . I'm not sure if this is caused by the Ataxia or by my fibromyalgia . Who diagnosed you Ataxia ? I am seen once a year by the Proff and once a year by the Ataxia nurse . I've recently been referrred to a Neuro physio as I had muscle wasting prior to diagnosis and I wanted to try and build the muscle back up .Ive also seen a dietician to make sure I totally understand how important it is to stick to the diet as even a trace will cause problems for weeks / months ahead .I hope this helps !

  • Hello motherelle

    I diagnosed myself after 4 1/2 years and countless specialists, I have a condition called interstitial cystitis and after many failed procedures i came close to bladder removal i discovered somebody had relief from the pain by cutting out gluten wheat and dairy. So I tried it and was shocked to find some of my neurological symptoms started to improve! Not all I'm afraid still need a wheellchair and other symptoms so started reaching it and couldn't believe i found gluten ataxia! Had some testing and was told of intolerances so asked to be reffered to the professor in sheffield I have a long way to come though I'm down in kent. I to have muscle waste and have only been gluten wheat and dairy free for 5 months and am strugglingto come to terms with my new life, I'm also in a really bad way with energy levels just about managing basic eating sitting and bed and feel quite ill I think it's my b12 levels. But struggle to take any vitamin tablets as they seem to cause me problems!

  • Your fatigue sounds very similar to mine but I also have Hypothyroidism so not sure what is causing what . At my worst I didn't have the energy to sit up ,I had to lay down ,also the apathy was horrendous . I would say I didn't see much improvement until after about 12 months of being Gf . We have to be extremely strict ,no may contain whatsoever ! And definitely ,oh well a little bit won't hurt . It's imperative you are totally GF . I have a friend who like you was in a wheel chair ,it's taken about 3 years but she is improving everyday . It's strange because her brain scans are and always were normal yet her symptoms are much worse than mine whereas I have brain damage but symptoms re walking ,balance etc only show when I'm tired . The Proff says it's all auto immune connected and therefore susceptible to all other autoimmune diseases. Have you had your Thyroid anti bodies checked or a full antibody profile done ?

    I'm still not fully back to myself but the very bad fatigue days are few and far between . I still suffer terribly with insomnia .

    Hopefully the Proff will see you soon ,I think I waited about 6 months for my first appointment with him and I think that was because a Neuro in the same department referred me .

    Good luck with your recovery Gravener 6 😊

  • Thankyou, I've had so many tests done now I'm not sure what has and hasn't been tested! I'm so pleased this awful fatigue and lethargyare mostly behind you now! Do you have the b12 injections I'm sorry if you have told me already. I cant bear this after all the things I've been through this is robbing me of any sort of life and I'm crying all the time! I keep trying pep talks on myself but I've had enough I can't see a way back! Sorry I'm not usually like this! I've always been so strong! I don't ever have a cheat I eat only meat and veg 24/7 my body is slowly allowing more food but defo no cheating but if I survive this I'd like one day to be able to eat a bit more gf foods. Maybe a spoonful of sugar is exactly what I need not had any since August actually that's going to be my last resort lol. Can you tell how you managed to get from not being able to sit up back to a more manageable life? And thanks I hope I get to see proff soon although I think my husband would have to carry me in at the momment 😩 thankyou for talking to me and I'm sorry it's done so much damage to you! I'd tell my husband about you but every time I start talking I burst out crying although we sometimes laugh cos I'm crying again did it ever get you like this? X

  • Hello I'm so sorry you are feeling like this ,I know how hard it is ! I had days where I couldn't stop crying I couldn't see the light at the end of the tunnel but I was determined not to give up .My b12 has always been ok but the first time I saw the Proff he tested my vitamin E and low and behold it was low . It was something that never crossed my mind . The dosage and type of vitamin E is only available through the hospital not even my Gp can prescribe it .I only needed one course to raise my levels and now I eat a variety of nuts everyday to keep my levels up.

    Gravener one bit of advice I will give you is to always get your blood results and hold onto them . Write on your results how you are feeling at the time . Do not accept results saying normal ,some results are better when in optimal range .There are so many things that can cause ,fatigue beside the usual iron ,Ferritin, b12 ,. Vitamin D is one that needs to be in good range

    Why are you only eating meat and veg ? Why can't you have rice ,fruit dairy fish ,I actually don't eat meat ! You could be lacking in some vital vitamins and minerals . Have I missed something re your diet ?

    Another thing I've learned is don't try to do too much on the days you have some energy ,easy to say I know but you have to conserve your energy and use it wisely .

    If you want to ask anything more just ask I'm happy to help in anyway I can .xx

  • Thankyou 😊 it's so nice to feel understood and good advice re. blood test results thankyou x I had a bit better day today cos I took multivitamin yesterday which picks me up but gives me leg and chest pain although it says free from everything I'm intolerant to. The reason my diets not great is cos I got leaky gut syndrome caused by my gluten wheat and dairy intolerance which means the food I eat leaks into my blood stream causing an allergic reaction and bladder pain! I am managing a bit more food now which includes small amounts of fruit, but nothing other than fresh food no processed or sugars. Which is tough! I'm just hanging on to the b12 idea cos it seems to have helped a lot of people and I've been struggling with energy levels for years but never like this! and re rice it causes reactions and bladder pain can you believe! And fish brings me up in blood blisters in my mouth and I used to be a comfort eater so this has taken away my comfort to and I try not to give up but am coming scarely close to it at the momment, I hate not being more positive for others and am sorry to be so down in the dumps but thanks for listening and understanding it means alot xx

  • Taking a multi vitamin is not a good idea and certainly you shouldn't be taking anything until you have had them tested . You could be overloading your body with something you don't need and not getting enough of something you do need .It will also scew the results not giving a true picture . I would find out what vitamins your Dr has checked ,b12 stays stored in the body for months . There are fat soluble and water soluble vitamins . Vitamin d is actually a hormone . Some vits need to be taken with others to work better ,e.g. Iron .

    Don't worry about being low ,I think most people go through this stage when they are not improving . You are being pro active with your health which is a very good start to your road to recovery . Keep in touch and if I can help in anyway just ask you can pm me if you prefer .

  • Hi Motherelle

    Thanks for replying good advice understanding vitamins a bit better, I suppose I'm clutching at straws I'm so wanting an improvement to not feel unwell and to be able to at least have the energy to cook a meal and see my grandchildren doesn't seem to much to ask! But maybe I'm being nieve regarding being unwell and just not handling or excepting it very well! That's one thing I've not been able to achieve in the 41/2 years of being ill is except it, I feel sure there's either a way out or a way to feel better and live with it and I mean live cos what I'm doing now is just about surviving it. With out any medical help what so ever! Everything I've learnt has been through the internet or lovely people like yourself helping me! Which I hope I can return one day 😊 thanks I'd like to pm you but I'm not great on here so you'd have to let me know how lol and if and when we do get an appointment to see proff in Sheffield were going to stay up there for the night so maybe we could get to say hi 😊 thanks again Paula

  • Click on my name and my profile will come up ,to the right hand side at the top it's says message . Click on that write your message then send 😊

  • If you can manage try some bone broth or chicken soup to help repair your gut lining. Traditional recipes seem to be better for our health.

  • Thankyou I do try a little soup each week but body struggles with it! I'm only able to eat very few foods without reacting, I'm hoping being gluten dairy and wheat free will eventually allow gut lining to repair. I think I may als have parasites in my gut and am hoping to get some tests done to see what I need to do about it! Unfortunately I seem to have a very sick body belonging to me 😒 thanks for your advice is it something you've experienced? X

  • Hi Graverner6,

    I certainly wasn't well by the time I was diagnosed, but not as poorly as you have described. As well as gluten and dairy I couldn't eat any of the nightshade family or any foods containing yeast. I found the only way to improve my health was cooking everything from scratch (no stock cubes etc). Home made chicken soup was a real life saver.

    Perhaps have a look at Sarah Ballantyne who blogs as PaleoMom and has written The Paleo Approach, which describes how to improve autoimmune conditions through what you eat (or don't eat). You could try keeping a food diary to see if you can pinpoint the foods that affect you.

    Good luck with reclaiming your health.

  • Hi Penel

    Thankyou, it encourages me to know people can become well again 😊 I also can't eat anything with yeast, I have to cook everything from scratch as well but I do try and get in potatoes otherwise my weight just plummets I was just eating chicken soup cos it's all my body would except! And I was a complete mess at 6 1/2 stone from 11 1/2 I've managed to get up to 8 stone now but potatoes do make me swell up a bit and a bit of pain but I think without them I'd just fade away! I'm just not prepared to go down without a fight or quietly! I will check out Paleo mum though thankyou. How long were you in bad health and apart from your soup what helped your recovery? Thankyou.

  • It's been several,years since I had to go gf. Improvement was slow but I started feeling better after a few months, especially after giving up sugar.

    As well as eating a lot of different soups, I went back to what could be called old fashioned food. I gave up low fat foods and made things like gf soda bread to take the place of the potatoes I had to give up.

    I've been able to reintroduce some foods, such as potatoes, tomatoes, in small quantities.

  • Thankyou I think I may have to give up potatoes to as it seems to cause my body serious inflammation but I can't imagine how I can survive on just fruit and veg? 😒 I will look into to soda bread thanks but I'm not sure it's for me cos I can't have any flours or yeast glad these days are behind you.

  • Perhaps you could try rice, quinoa or buckwheat groats in place of potatoes? It's a good idea to soak quinoa and buckwheat before eating as it makes them easier to digest. Perhaps try sweet potatoes in place of ordinary potatoes.

    Soda bread doesn't have yeast in it, you use baking soda instead. I also use chickpea, rice and buckwheat flour, which are all gluten free, to make pancakes etc.

  • Thankyou I might persist with sweet potatoes unfortunately I react to rice and buckwheat but haven't tried quinoa yet I will look into it and the soda bread I think these are things I may be able to tolerate as my body heels hopefully 😊

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