Introducing Myself

General
1

Hi, I was diagnosed with gluten ataxia in April of this year after many years of not knowing what could possibly be wrong with me. I've just turned 18, and I'm in nursing school.

I've come here to find others like me, who can maybe help me with the stress and emotional troubles having ataxia has given me. A couple days ago I was crying a lot because I realized I can't do so much that I want to do. When I was younger, I was in my town's volunteer ambulance corps, and since then I've wanted to be a volunteer EMT until I graduate nursing school. I now realize that being an EMT requires a lot of physical strength, which I don't have. Maybe one day I'll be able to lift a heavy gurney? My dream is also to be a doctor; however, I've decided to take an easier route for now, to see if I can handle nursing.

One of the bigger issues for me is "brain fog". Sometimes trying to write papers (and there's a whole lot of those to write in college), I can't focus at all. I stare at the blank page for hours and can't think of anything. I also feel like I'm in a dream, and I can't tell what's real and what is a dream. This is a big issue because college is my priority right now.

On a good week, I'll have very few symptoms. I'll have good balance, I can think, good sight, no twitching or muscle cramping, and I'll have energy. Things that can cause a flare up are stress, illness, gluten (of course), and lack of sleep. School causes stress, which causes me to do bad, which causes more stres... it's a never ending circle of stress.

How do you guys prevent those bad days? I'm having a bad day today, I had a virus earlier this week and I think that's what made everything worse.

I know that eating wholesome foods can help, but I don't have time or money to buy fresh fruits and veggies all the time :-( what do you guys eat?

Thank you so much,

Rebecca

2

I eat gluten. Because I do not have gluten Ataxia. But you do. So you do need to stop eating gluten. So I'm told. Dr. Oz just had a show on a gluten free diet. Its not as hard or costly as you think. If you buy gluten free food off the shelve it is costly. You just need to learn. I hear its a lot of work. But you do have gluten Ataxia so you have to. It will keep you feeling better. You doing Nursing, Thats great. I think most of us have bad days. Ataxia is very dignifying.

Lori

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Rebecca,

I am so sorry to hear you are having so many problems at such a young age! And I have a daughter who was too ill to finish college (Criminal Justice Major -- she wanted to work for the FBI), so I feel for your situtuation.

There was only one comment you made that I found very disturbing: I know that eating wholesome foods can help, but I don't have time or money to buy fresh fruits and veggies all the time.

Eating good food is NOT an option for you, it is NECESSARY for your health!! Like Lori says, stop eating gluten (if you haven't already). You might want to experiment with eliminating dairy and/or soy as well. You may also want to limit your grain intake too.

As far as not having time or money, it is very easy and cheap to buy fresh fruits and veggies and eat them regularly. Daily green salads are a good choice. You can add lots of extras to salads -- nearly any veggie, meat, nuts or seeds will give added nutrition. Eat fruit at least once a day. Beans are very inexpensive and can be eating plain, with tomato sauce, with your favorite salsa .....

The list is endless Rebecca.

If you want to contain me at ■■■■■■■■■■■■■■■■■■■, I can refer you to some websites that may be helpful.

Hang in there! You are not alone!!

Sandy

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Hi Rebecca, it is very hard indeed.

i was diagnosed with idiopathic cerebellar ataxia in sept 2008.

i try to stay upbeat but its very hard.

Try and meditate and do physiotherapy..

Ask the doctors and nurses anything.

Be strong.

jOSEPH

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Oops… I guess I didn’t make it clear that I’ve been 100% gluten free since my diagnosis in April. Probably the brain fog at it again, lol.

Sandy, I live in the suburbs of NYC, and if it’s not summer time, fruits and some veggies can be very expensive since none of them are grown anywhere near here. I love salads, but the one’s my college sells cost $7 without tax, for a college student that’s a lot to spend every day for lunch! haha.
What I meant by “wholesome” is foods that aren’t pre-packaged. My parents aren’t gluten free, nor is my boyfriend, or really anyone else I know, so all the food I’m around either has gluten or isn’t really healthy (potato chips for example are gluten free but are really salty and greasy) so I’m left with scavenging for anything gluten free which usually ends up being a banana or take out asian food.
I think another reason for not eating only fresh fruits / veggies is because I really don’t know how to prepare them in a way that is yummy. It doesn’t help that my kitchen is being renovated so I can’t use it, either!

Thanks for the warm welcome, everyone :slight_smile:
Rebecca

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Wow a new kitchen! Let the cooking begin! lol. Just take food you eat. And mix it together. Everything is a learning experience

Lori.

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Rebecca,

When I listed some of the things that would be good for you to eat, I was not expecting you to find these in a restaurant nor in a college lunch room. Yes, I can see where that would be expensive! I have been 'brown bagging' it for years (even before I found out I was gluten intolerant).

First, find yourself a good insulted 'lunch bag'. I find they cost between $8 - $14. Add some frozen bottles of water (you know those plastic bottle that juice comes in.) For my salads, I buy a large box of organic lettuce at Costco for $5 and it lasts me over a week (of course, I add other veggies to it!), I make my own salad dressing and keep a small bottle in my 'lunch bag'. Worked great!!

I'll bet if you talked to your parents and your boyfriend about your health issues, I am sure they would be open to keeping healthy goodies around for you. If not, use you lunch box when you go visit and I think they will get the hint.

And, personally, I would love to have access to the numerous stores you probably have in a large area like New York to buy gluten free bread and organic produce. And, most fruits and veggies can easily be eaten raw -- you don't need to cook them!

I would recommend you find yourself a support group. I would think there would be some on campus. Check out your local health food store and take with the folks there. Check on the web -- you did find us!!

Look around girl!! The options are endless IF you spend the time and IF you choose to place your health first. Personally, I see your response as similar to my daughter -- it is just not enough of a priority for her to make better eating choices. Take it from a 60 year old! It does not get better without doing your 'homework'!!

I wish you luck -- you are on a new path that make take some time for adjustments!.

Sandy



Rebecca Maria Velez said:

Oops... I guess I didn't make it clear that I've been 100% gluten free since my diagnosis in April. Probably the brain fog at it again, lol.

Sandy, I live in the suburbs of NYC, and if it's not summer time, fruits and some veggies can be very expensive since none of them are grown anywhere near here. I love salads, but the one's my college sells cost $7 without tax, for a college student that's a lot to spend every day for lunch! haha.
What I meant by "wholesome" is foods that aren't pre-packaged. My parents aren't gluten free, nor is my boyfriend, or really anyone else I know, so all the food I'm around either has gluten or isn't really healthy (potato chips for example are gluten free but are really salty and greasy) so I'm left with scavenging for anything gluten free which usually ends up being a banana or take out asian food.
I think another reason for not eating only fresh fruits / veggies is because I really don't know how to prepare them in a way that is yummy. It doesn't help that my kitchen is being renovated so I can't use it, either!

Thanks for the warm welcome, everyone :-)
Rebecca
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Welcome Rebecca! This site is great...,hopefully you'll feel that way also! I have sporadic cerebellar ataxia, not gluten ataxia, although I think it's so important to eat as healthy as possible. Exercise for strength and balance is important too! If you're able to exercise a bit each day, it will help get rid of stress and brain fog. There are many sites for gluten-free eating, as well as gluten-free food preparation on the net. You sound like a very intelligent, motivated young woman. Best wishes with your studies! I wish my ataxia would "go away", although because it won't, I try to count my blessings and live by the words, "I may have ataxia, but it doesn't have me"...,ha!!! ;o)

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Rose

I wish I had your strength!

Lori

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You do have strength Lori, as you're raising children! That's a tough job, especially with ataxia! I admire you for that! Believe me, I have "bad" days too, and my children are grown and out of the house now...,ha!

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Thank you so much, everyone. I've never met anyone else with ataxia, let alone gluten ataxia. I have yet to find a doctor who even knows what gluten ataxia is. It feels really great knowing I'm not the only one.

I guess I don't know yet how to manage gluten ataxia, though. Besides staying away from gluten, Sandy, you mentioned staying away from dairy. What other things can affect me in a bad way? Also, what supplements could help me?

Exercise has been an issue as well. I take walks, but besides that, I get exhausted very easily. Going up stairs or trying to run can leave my muscles in a lot of pain and me out of breath. What exercises do you do every day?

Thank you :-)

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I bought a book online called 'The Balance Manuel" ($19.99), written by a physical therapist. I continue to receive "free" exercise videos in my email from the same therapist, which have been very helpful. Most exercises can be done standing, sitting or holding onto a chair, counter or ledge. I also use 3 LB hand weights for upper body exercises (you can sit or lie on the floor to use them). I hold onto a ledge between my kitchen and family room to do leg lifts etc., or do them on the floor. Yoga or pilates is good for ataxia as they challenge balance. If you don't take an actual class, you can get a book or video online that shows different poses, and do them at home. I get fatigued easily, so just do a little at a time, a couple times daily. Do whatever you can, safely, as it pays off in the end.

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Rebecca, I take Neuro2 and helps greatly -- especially with the brain fog. You can order from Dr. Stan Guberman 800-■■■■■■■■. Bottle of 90 is around $49. If you talk with them, tell Karen (who answers the phone) that I sent you!

Sandy

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Rebbeca

I have bad days and bad weeks. I do not have gluten ataxia but, spinular I too have your problem with writing. I work for an online police magazine. I could write an article and have it in by the end of a day. Now it takes several days. Stress also elevates symptoms the effects can go on for days. Return to normal several more days. Try to work through the stress I know it is hard to do. I was a cop for 37 years and under constant stress and then this happened. I have learned to just let stress roll off my back like water off a duck LOL

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Rebecca,

I have gluten ataxia. I was diagnosed in Jan 2009. Learning to be gluten free is not easy, but you are a smart young women and you CAN do this!

I use Cecelia's gluten free shopping guide. It's super helpful. I also can not eat any foods that have been processed in a plant that also processes gluten. Do you have Celiac Disease (CD) or are you gluten intolerant? A person with CD get sick from even 20 parts per million of gluten. So eating foods that aren't processed (fruits, veggies, etc) are what I do. Yes, I would defiantly brown bag your lunches. I never rely on anyone else to provide my food. It's my responsibility. But a cute lunch cooler and freezer pack to keep it cold and just make it a new habit.

It can take months to years to fully recover from the brain fog. I would suggest a diet meant to reduce inflammation as part of what gluten ataxia is about is, inflammation in the brain. Every time you eat any amount of gluten your body is going to react with inflammation. It could take months for each time you do eat gluten (even accidentally). Probiotics are helpful too.

On the subject of processed foods, in the US, there is NO law that just because a food is listed "gluten free" that it is in fact gluten free. It's a sad reality. So again, real foods that come from the produce section are our safest bet. Single ingredient foods. Even fresh meats can be marinated (not revealed on the label) with gluten!

While gluten is not absorbed through the skin, if it's in your makeup or lotion it can get into your mouth (especially foundation and lipstick) and cause a reaction. There are some gluten free cosmetics. Imagine having just put on lotion on your hands and then picking up some food. The lotion transfers to the food and BAM, you now have gluten in you. Ugh.

Is the new kitchen just for your use or do you have to share with others? My whole house is gluten free. It's makes my life SO much easier and I'm healthier because of it.

For brain fog, I have some specific suggestions. Eat small amounts (1 oz) of nuts and seeds every day: walnuts, sunflower, almonds, 1 T flax meal in oatmeal etc).Lay off the dairy & meats (especially processed meats with nitrates) for at least 6 months.

Green smoothies (not juicing) are miracles for getting better! Here's my recipe:

1 apple

1 T ginger root

1/4 C lemon juice

1-2 Cups of cucumber (leave the skin on)

1 big handful of baby spinach

1 big handful of baby kale

Put the first four ingredients in the blender first. Blend till smooth then add the greens and blend till smooth. Very filling. The apple and ginger are what you taste. I eat these every day. Yummy!

Start thinking of food as medicine. IT IS!! You CAN get better, and the power is in your hands (or mouth, ha ha!!). Please join our Gluten Ataxia group within this site! :-)

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Also:

We have an Ataxia group for those in the US: http://americanataxianetworking.ning.com

That way doctors, meds etc make sense. :-)

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Great advice Julie! How do you join the Gluten Ataxia group on this site?

Sandy

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Oops! It's actually on the American Ataxia Network. It's an offspring of this site. On THAT site is the gluten ataxia group. Sorry for the misinformation.

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Hi Rebecca, I have gluten ataxia also. I have been gluten free for 3 years. Being gluten free is difficult at first because there is a high learning curve about what foods are gluten free, having gluten contamination from various surfaces, and learning what other products contain gluten that you are using. Once you can truly get gluten out of your system and know how to play it safe you will have more stable days. Here is an example of what I mean. You say you eat Asian take out. More than likely it is filled with gluten unless the restaurant says it's gluten free, and they take measure to assure no contanimation. Asian food usually uses soy sauce, terriakyi sauce. or hoisin sauce. Unless they are using gluten free sauces, you are eating gluten. Also if they don't use dedicated pots, pans, and utensils, you will be eating gluten through contamination. You also need to realize that it is not just eating gluten free. Anything that touches your skin, hair, and mouth must be gluten free. I had to buy gluten free make up, shampoo, lotions, toothpaste, etc. I also had to get new cutting boards, have a dedicated toaster, make sure my jams, jellies, peanut butter, butter, etc. stayed contanimation free. I made a lot of mistakes, but I learned fast because my body slapped me down for each mistake. Here is a simple example. I was playing with play dough with my grandson. After 20 minutes, I became suddenly ill. We looked on the play dough container and it had a big label saying contains wheat. Gluten entered my body through my hands touching the play dough. You also mentioned supplements. Have your vitamins levels checked. Both my vitamins B-12 and D were extremely low. That will affect your thinking. I have to give myself B-12 shots weekly because I lost the ability to process it through my stomach. I take Vit D daily. Your vitamins should be in capsule form. I also had calcium deficency and Osterpenia had started. I have since reversed most of it. I'll write later about exercise.

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Hi Rebecca! I too have gluten ataxia and have been on a GF diet now for nearly twenty years. Folks writing to you here are right in all they say - you got to be really really really vigilant…Ahbee and I have become good friends through this site and its so good to be able to chat and talk things through. I’m not typical in what is happening to me and I am due to g back to see Dr Hadjivassiliou next month- he is the man that if you like discovered and named the condition as is one of the world expert s on it. Ill let you know more when I know more myself.have a look at the Useful Gluten free guide I posted here recently - it’s mainly for British coeliacs but the principles remain the same- you don’t risk it for a biscuit!!
Send me a message and we can chat - Ahbee did and she hasn’t regretted it!
All the best to you,
FeelingOurWay