That is encouraging.My ataxia seems worse but I have lost weight.I have persevered with th e GF Diet although my daughter whose best friend who is a Celiac said the Chinese dont understand GF so ate a pork thingy that was supposed to be gluten free but my daughter says they are laden with it.As it was her wedding with lots of visitprs I had two Chinese meals.Should I avoid Chinese meaals?I have been making everything at home,looking at labels even avoiding Oxo cubes in gravy.
I can't walk or speakanymore and the Neurologist cant find a genetic linnk so I thought it would be worth a try.I am supposed to have Cerebellar Ataxia of unknown cause.I read on this site that GF was supposed to help neurological conditions.
As I said before I have the same Ataxia as you. I give you credit for tring the GF. Please keep letting me know how its working for you. I have to go by what my docor told me that it wont help with the kind of Ataixa I have. Plus the biggest thing is I cook for 8 pleople every night. But I am eating differently!yeah for you!
Thanks Lori.Am into week three of the GF diet.No improvement yet but I have been encouraged to persist.I have always eaten heathily so feel a bit cheated.I am a bit slimmer though which is a good thing.I will let you know if there is any improvement but it is very hard checking all the labels before you eat anything but as I feel the Neurologist has given up on me I am desparate now and will try anything that is suggested.
You made it this far! You go Girl! I know the feeling of going to the doctor, and the feeling of them giving up on you. And no hope., And as far as reading all the lables. Really. It gives you something we can do. Ha, ha. You will learn and have your favorites. Hang in there!
Lori Marie Turner said:
Thanks Lori.Am into week three of the GF diet.No improvement yet but I have been encouraged to persist.I have always eaten heathily so feel a bit cheated.I am a bit slimmer though which is a good thing.I will let you know if there is any improvement but it is very hard checking all the labels before you eat anything but as I feel the Neurologist has given up on me I am desparate now and will try anything that is suggested.
Looks appetising.I suppose it was all the short cuts I was taking are a lot of effort.I know what you mean by favourites.I might have to change some things.Luckily the days of catering for all the family are finished now Just.We can please ourselves.I now dont have any digestive problems but I did years ago when I was stressed.This is a different sort of stress and ironically apart from the Ataxia which impinges on everything I feel remarkably healthy. It is interesting to note that other things get better as a result of a GF diet so I will persist and hope.
If you have already had a reply ignore this, wrote a reply and I think I hit a wrong button and its disappeared, so I'm trying again.
Soy sauce in chinese meals is a problem, its enough to give me a relapse. If I eat out I always check with the chef or caterers first and quiz them on chances of contamination etc. It makes me sound paranoid but I can't afford to eat any traces at all You also need to make sure that you don't pick up crumbs etc from people around you eating. For the first few years we banned all bread flour cakes etc from the house. This was really tough on my children but they were brilliant. I did find that I became more sensitive to gluten and a really tiny amount would bring back a dramatic return of symptoms - It is just possible this is why you are getting worse.
How long have you had your ataxia? I would definitely stick to a strict g.f diet for 6 months. I think it would take a while to see any improvement. I did see improvement fairly quickly (weeks not days and it was over 6 months or more before I felt I could walk well. I was lucky I started a g.f diet early on, if you have had ataxia for some time I think it could take a lot longer to see an improvement.
Have you read the research by the Royal Hallamshire Hospital Sheffield in particular Dr Marios Hadjivassillou?
Marios works alongside Ataxia uk researching all the different types of ataxia, including gluten ataxia
He recommends that anyone who has ataxia of an unknown cause should be tested for antigliadin antibodies (gluten sensitivity) ? - although this will come back negative if you are on a gf diet anyway. He says gluten ataxia accounts for 40% of ataxias wth an unknown cause.
I really hope you do see some improvement from the gf diet, obviously explore everything but if you want to rule gluten in or out you do need to be obsessively careful.
Please let me know how you get on.
Fran
Marie Turner said:
Hi Fran
That is encouraging.My ataxia seems worse but I have lost weight.I have persevered with th e GF Diet although my daughter whose best friend who is a Celiac said the Chinese dont understand GF so ate a pork thingy that was supposed to be gluten free but my daughter says they are laden with it.As it was her wedding with lots of visitprs I had two Chinese meals.Should I avoid Chinese meaals?I have been making everything at home,looking at labels even avoiding Oxo cubes in gravy.
I can't walk or speakanymore and the Neurologist cant find a genetic linnk so I thought it would be worth a try.I am supposed to have Cerebellar Ataxia of unknown cause.I read on this site that GF was supposed to help neurological conditions.
Thanks for the info.I will remember about soy sauce as I may have added it to gravy rather than using a powder with gluten
I have had ataxia for about 5 years now but my speech only went this year.I know i am getting worse so I need all the encouragement I can get.Although not in a wheelchair yet I am now furniture walking around the house.I cannot walk unaided out of the house now.I would love to think a GF diet might stop the progression but the Neurologist wasn't optimistic when I mentioned it.I prefer the testimonies of others on this site. I know 3 weeks seems a very short time.
I am with you on the paranoia.You feel so stupid when asking as you can't communicate in English let alone asking Chinese etc if they use gluten.I feel very paranoid reading the small print on all those labels.It used to be a tiny amount of red peppers for me in my 20s and 30s.I had to ask when going out if a sauce containing peppers had been used.I would soon know as I wo;uld first of all feel sleepy but then I could follow the pain all the way down. I did not hjave it in my 40s at all. Like wise I had severe hayfeever for years but again it went in my 40s.They were both mysteries and jiust goes to show how complex is each human body.I used to teach a boy with a severe nut allergy and I had to cary the boys lunch box sitting next to him like a time bomb.It is laghable now but I din't fancy getting epi pen out on the forest floor.!!
Now i can eat peppers of any colour ,dont have hayfever but have ataxia instead.They have not found a genetic link which is good news for my two children but i hope there will be a cure by then anyway.They dont know what caused it.
Maybe gluten free will have an affect in time I will let you know. I am familiar with Dr Marios' research. I saw him at the Ataxia Conference I think.
Marie
Thanks for the info about Chinese.WE dont have many but this was a special occasion and its worth knowing for the future.
The loss of speech must be so hard. Sometimes I think you'd rather have a reason for the ataxia even if its not good news, but a relief that it isn't hereditary.
Incidentally, I know gluten is a bit of a long shot for you but the first neurologist I saw was quite scathing about the Sheffield research and left me in a lot of doubt, felt very much on my own and spent a lot of time wondering if its in my mind etc. Just had to keep reminding myself how gluten effected me. Its only in the last year or so I've stopped challenging myself every summer holiday with gluten - (couldn't quite belive it could have such a bad effect.) Attending Marios clinic and finding out that there is evidence of gluten damage on the MRI scan convinced me
Sounds as if you've already had a hard time with the peppers, strange how food can so badly effect us. By the way, Indian seems to generally be a safer option, but still best to check carefully.
You mention teaching - are you a teacher?
Fran
Marie Turner said:
Hi Fran
Thanks for the info.I will remember about soy sauce as I may have added it to gravy rather than using a powder with gluten
I have had ataxia for about 5 years now but my speech only went this year.I know i am getting worse so I need all the encouragement I can get.Although not in a wheelchair yet I am now furniture walking around the house.I cannot walk unaided out of the house now.I would love to think a GF diet might stop the progression but the Neurologist wasn't optimistic when I mentioned it.I prefer the testimonies of others on this site. I know 3 weeks seems a very short time.
I am with you on the paranoia.You feel so stupid when asking as you can't communicate in English let alone asking Chinese etc if they use gluten.I feel very paranoid reading the small print on all those labels.It used to be a tiny amount of red peppers for me in my 20s and 30s.I had to ask when going out if a sauce containing peppers had been used.I would soon know as I wo;uld first of all feel sleepy but then I could follow the pain all the way down. I did not hjave it in my 40s at all. Like wise I had severe hayfeever for years but again it went in my 40s.They were both mysteries and jiust goes to show how complex is each human body.I used to teach a boy with a severe nut allergy and I had to cary the boys lunch box sitting next to him like a time bomb.It is laghable now but I din't fancy getting epi pen out on the forest floor.!!
Now i can eat peppers of any colour ,dont have hayfever but have ataxia instead.They have not found a genetic link which is good news for my two children but i hope there will be a cure by then anyway.They dont know what caused it.
Maybe gluten free will have an affect in time I will let you know. I am familiar with Dr Marios' research. I saw him at the Ataxia Conference I think.
Marie
Thanks for the info about Chinese.WE dont have many but this was a special occasion and its worth knowing for the future.
Ahbee, I'm dying to try that balance vest!!!! Is it the one that UCLA has with the accelerometers?
Ahbee said:
Hi everyone, I have had gluten ataxia for over two years. My symptoms come and go too. No one has discussed makeup, lotions, shampoos,etc. For me anything that touches my skin that has gluten will make Me have an attack. Does anyone wear a balancing vest? When I got mine, within days I became a different person. I could think again because I didn't have to worry about balancing and falling. My legs became stronger and I can do stairs now. The vest is weighted to your weak areas. A therapist gives a series of tests then weights the vest and gives the tests again making any adjustments. And truely instantly you have balance. It's really like a miracle. And about the isolation, gluten ataxia changes your life in so many ways. I have to push myself to call friends and visit, but it's worth it. I recently read book about a person who's life was quickly changed like all of ours. He said,"stop thinking about what you can't do and think about think what about what you can do. He said even think about the smallest things like being able to pick a fork or brush your teeth, etc. It helped me so much. I began to realize all that I can do and how much I appreciate that.
It is made by Balance Wear. I thought it was out of the bay area. I have been looked at some balance belts or sensory belts. They look like the same principle. I was thinking it would be nice to wear during the summer. Ahbee
Thanks Ahbee, I keep looking for vestibular prosthetics that are on the market but nothing I'm interested in seems like it ever gets to market? The internal vestibular device that is based on cochlear implant technology looks really promising but I would like to see more testing and trials.
Ahbee said:
It is made by Balance Wear. I thought it was out of the bay area. I have been looked at some balance belts or sensory belts. They look like the same principle. I was thinking it would be nice to wear during the summer. Ahbee
I like yourself suffer with problems with vertigo and balance caused by a brainstem lesion, I really suffer with ataxia as a symptom due to the long-standing brain stem lesion.
My balance is awful, have constant dizziness and I have regular falls as well as frequent episodes of vertigo which is really intense. I find that it is especially bad if I am in a large building with high ceilings, being in them makes me feel very unwell. Like you, I find that I cannot handle too much stimulation - really loud noises, too much motion and so on really seem to affect me bringing the vertigo on or just making it much worse.
I also have something called spastic paraparesis which causes severe stiffness and weakness in the legs - so my legs constantly give way on me leading to a lot of falls and stumbles throughout the day!!
I often find myself thinking that I live with some really strange symptoms, which I suppose they are - even a social worker who runs a group I attend commented on not having seen some of the symptoms before in clients!!
So, know that you are not on your own and take care of yourself x
That's really interesting Butterfly, my neuro says my spasticity comes from the brain stem as well. I always think it comes from my brain trying to protect me from falling. I also get knee-give-away when I get too tired.....a flash of very electrical metallic pain on sort of the outside of the knee and then it unlocks and gives way. I also get a lot subjective and objective vertigo- the constant sensation when I am sitting still that I am sliding forward as if on a bobsled and then hitting a wall and jerking back. Or the floor is falling out from underneath me or my cappuccino machine is jumping left and right about 9" a leap! It repeats this motion constantly. Sometimes when I walk it can feel like I am ice skating instead of walking, other times I feel extra bouncy, other times so heavy and water logged that I can only penguin walk and shuffle, most of the time how ever I walk like the tin man very scissery. ;(
Hi Jeannie - Question about the Gluten -free diet - I've had issues with my balance for the past four years; however, more noticeably in the last month - could be from change, stress, etc. - who knows.
Wheat bread has pretty much been a staple for me, but from what I understand gluten-free means no wheat, no rye, and no barley...that pretty much eliminates the 3 food groups for me =)
I'm interested in trying the gluten-free way; however, I think that bread is too engrained in my diet. Is there an bread alternative that anyone uses?
Jeannie Ball said:
Hi MissCake2,
It sounds as if I have allot of the same symptoms, or did have anyway. I have been off Gluten for a little over 5 years now but I wasn't diagnosed having gluten sensitivity. I had a blood test but I came out on the normal range. My Dr. suggested I try it anyway.I find it helps! At first I found it hard to go without gluten/bread but when I gave up all flour's it seemed so much easier for me instead of trying to substitute other foods.
I have Sporatic SCA. Meaning they don't know which one I have. When I let go of the combination of flour and refined sugars somehow together they help me with my symtoms with my gait etc. I've become much more steady reaching for things, balancing etc.
I was really good about doing the Wii fit plus on the Nintendo for a few years I stoped a few months back because I was doing so well walking etc I thought I was almost cured and I didn't need to anymore. Wrong! I really have noticed a real diffrence in my gait etc. So I guess this was good to find out! I have started back it using it cause it helped so much.
Do you exersize? I find even though I hate exersize for the sake of exersize, using the Wii fit plus tricks my brain. I play balancing games etc., that help my brain (cognative thinking). Not only that but I love feeling that my body is more in control of the way it moves and how it reacts to things but it actuall helps my mood too! To me that's huge!
I think we all tend to issolate having Ataxia. I tend to also, but force myself to reach out on a regular basis. I have been working with my foods and schedualing my life now so I don't have to take meds right now. I'm really working on keeping it that way as long as I can! :-)
I find also that since I have Quiet time every morning that really grounds me and helps my mood though out my day. I can tell when I don't make that time. I started with only 5 mins. It verys daily but most of the time I'm doing 40 mins now. I love it!
If you want a good gluten free bread, Udi's is pretty much it. Gluten free bread is not going to taste or have the texture of wheat breads, but Udi's is pretty darn good. I particularly like their bagels and buns (hotdog, hamburger).
Most of the time you will find GF breads in the freezer section at the grocery store. Whole Foods carries it as do many other stores. Never put GF breads in the refrigerator, they'll get hard as a rock in a day. Either the counter or the freezer.
I make my own bread using a bread machine and Bob's Red Mill GF "Wonderful" bread mix. I follow the recipe plus I add milk instead of water and 1/3 flax meal and 2 T extra liquid. It comes out really good. When it cools I slice it and wrap each slice in wax paper and place in the freezer what we won't eat that day. Since we don't eat much bread, it keeps well this way.
The best GF pasta is Tinkyada. Just don't boil it rapidly. A nice slow simmer or it will fall apart (gluten holds stuff together).
I have to say, I can not really stand the gluten free sandwich bread in the store. As far as hamburger and hot dog buns, I get the Udi's, spread a small amount of butter in them and toast them on the griddle.
For sandwich bread, I use pamela;s bread mix (bought in large amounts on amazon, we have a family of 4). It took a while to get it right. The main thing, is to use 1 whole egg and 2 egg whites, instead of 2 whole eggs. The rest is getting the timing right with your particular oven. During the school year, I make a loaf a day. It is good and even company enjoys it
I like Rudi’s multigrain bread, Usi’s bagels plain and cinnamon, Sharr hamburger buns and ciabatta rolls, Udi’s hamburger buns and hotdog buns. I make sub sandwiches with the hotdog buns.
Since I really don't eat breads anymore I can tell you what I used to do though. I found it really easier than I thought to make my own bread in the oven or in a breadmaking machine.
I liked using rice flour the best. It was more fluffier I thought. I added raisins and cinnamon. I let go of any preservitives that I could even in bread.
Now since I don't do bread (I never thought that I could ever let go of having it, I used it at every meal and my snacks too) But I'm actually making a Raw cracker that I really like that has crunch that I crave. It has organic flaxseed, organic sun-dried tomatos, organic garlic, organic kombu, organic Herbs and sea salt in my dehidrator.
This cracker is also packaged and I have bought it before @ Whole Foods (Health food store) before I learned to make it at home. It's gluten free, made by " Two Moms in the Raw" it's called. This lady was diagnose having MS and through her exsploring all the options she found a natural approach to healing, including a raw food diet works best for her. The pesticides, additives and the enzymes neede to support our bodies welbeing and reduces the overall nutrition that our bodies receive. She found it hard to find tasty satisfying treats and raw treats to have on the run. So she came up with her own delicious snacks. The only problem I found is that they are addicting! :0)
Hi - I'm not dairy-free, but I drink coconut milk which has no dairy and claims to have 50% more calcium than regular milk.
Jeannie Ball said:
Do you know what she eats in place of dairy? I love yogurt. I eat 8oz each morning that I'd have to change. I don't know what I would put in place of it for breakfast. Any idea's?
Marie Turner said:
My sister in law was diagnosed with cancer in the summer and given two years.She has been dairy free for months and the latest scan showed the tumours had shrunk a lot.She puts it down to dairy free.My husband also has very bad Irritable Bowel Syndrome which I am convinced is dairy .Interesting to see what works.Some things seem to work really well for some.My neurosurgeon said to try anything to help me feel better.I heard that the wi fit is very good for exercise. i got one for xmas and can't wait to try it but have just had a virus leaving me feeling a bit weak.
I love coconut milk now! I don't have milk anymore. Sorry I thought that you let dairy go but now I see it was Marie's sis in law I see that now, but it's helping me out alot more than I though since I went dairy freet! :0) It took me two attempts but I finally have been doing it now for a few months and I can see a diffrence. Someone said dairy is like a gluten in the body so that's why I stoped it.