The Gluten Summit

The Gluten Summit

At one time I did wonder if Gluten was responsible for my ataxia. Anyone who is Idiopathic can take a test to rule it out. :slightly_smiling_face: xB

Gluten Ataxia or “Regular” Ataxia -

Gluten seems to have a significant effect #justSaying

I am new to this group. I know my ataxia is due to celiac. In the six years that I have been able to be 100 percent gluten free I have gone from not being to hardly transfer from my wheelchair to walking a little. I can not walk a lot but it sure makes it easier living alone. I also had a lot of trouble feeding myself and cooking was out of the question. Now I am doing art and playing the piano again. I still have lots of struggles with the ataxia but it is so much better I feel like a new person -well almost. I was officially diagnosed with celiac with a biopsy and all that way back in 1986. but the diet is extremely hard to follow when one is in severe povery and/or homeless like I was. It is just the past six years that I have enough money to eat everyday at all let alone gluten free. I can’t believe how much better I am feeling too.

:slightly_smiling_face: It’s good to hear you feel so much better. I have a friend with Gluten Ataxia so I know how challenging it is keeping to a strict Gluten Free diet. Eating out is especially difficult, even if food is listed as Gluten Free, there’s no guarantee it’s free from cross contamination. Food preparation areas need to be separate. I’ve been told that even some medications can have traces of Gluten, so any prescriptions are best discussed with a Pharmacist.

It is possible to have Gluten Sensitivity, not the same as Gluten Ataxia, but with similar symptoms. :slightly_smiling_face:xB

:wink: Thanks so much for your response Beryl. My doctor does not understand
how difficult it is to follow the diet.
I turned 70 on Dec. 28th and one of my sisters and her husband brought me
lunch from a restaurant that I have
eaten the same meal several other times. But this time there must have been
some gluten in it. And the next
morning I woke up with a very sore mouth. The taste buds in the back of my
mouth were so swollen I could
barely swallow let alone eat. This was the only incidence of gluten
ingestion in almost a year and it did affect
my legs for about a week. It took over three weeks for my mouth to heal.

I got dentures in 2014 because of the damage celiac did to my teeth. In
September I will be having a major
surgery on my right arm. The osteoporosis from celiac left me with just two
pieces of thin flat bone for the
shoulder joint. The rest of the humerus bone is nothing but dead bone from
avascular necrosis. In addition
to the celiac, I have had several very severe injuries to my arm and hips
and these sure did not help. These
injuries were from domestic violence which is why I ended up homeless
several times—trying to escape
was a feat that many women with disabilities can never do. And this is very

Where I live disability of any type is viewed as caused by sin and
personal evil. this makes it very difficult
to be proactive. But I came up with a way to do some work. They love piano
music here and they love
gardening. So I started a center-a nonprofit one at that -to enable me to
teach art and piano to persons
with neurological disabilities like I have. I even have one of the best
dieticians on my Board of Directors.
She is top in the information of about celiac. The grocery store where she
works is one of the few places
where they even sell gluten-free food. By the way, my dietician also has
celiac which makes us quite
a pair.

I will also be working with the local Area Agency on Aging to create
more awareness of celiac
and older persons. Meals on Wheels does serve gluten-free meals elsewhere
but not here. So
this is one thing my center is going to be working on. I will also be
working on abuse towards
women with disabilities and especially towards older women. Later on, I am
starting with women
now but later want to add men too.

I am in a rural development housing program and have worked it out with
the housing program
to be able to sell my own art to fund the center. This makes it loads of
fun. One thing about the
art and piano lessons is that they will all be adapted towards each
individual’s physical ability.
And because of funding my center with my art the lessons will be free.
People can make a donation
if they want to but no one will be excluded because of money.

I am doing my work locally but hope to eventually help other people start
a similar group
in their community. My focus is on rural areas because this is one area
that is very hard
to have any difference and medical care for celiac is very limited.

One other issue I will be addressing is the neuropathy from celiac. I
have horrible pain
and it is only partly from my arm injuries. With all the hostilities
towards opioids these
days I have been working very hard to find ways to use music for pain
relief. And there
really are ways to alleviate piano by playing the piano. It is even an
method. but here it will still be difficult because most people have not
even heard
of it. The tool is called Vibroacoustic Therapy. Most often a lot of
technology is
used to provide the sound vibrations. Harp music is also used. I may be the
person who uses a good old acoustic piano. I know I cannot promote therapies
here but it works and when your body feels like someone took a rusty jagged
knife and scraped all your skin off and then rubbed cayenne pepper in the
skin one has to find a doable way to alleviate the pain.

One of the main reasons I started my center was the isolation I was
I had lived in Austin, TX for 22 years before I moved back home to Nebraska
in 2012
to be closer to my family. but after our Mother died in 2013 I never saw
any of my 8
siblings. Most of the time I saw a human being once or twice a month. It
was awful.
When one of my neighbors committed suicide during the night I knew something
had to be done. And that something had to be more than just putting any
older person who
any problem in a nursing home.

After reading posts from persons with other forms of ataxia I do know that
one thing
I will very clear about is that celiac disease ataxia is only one type and
that when I make
do my work I have to make sure I don’t just promote any idea that celiac is
the only ataxia.

Anyway, Beryl, thanks so much for the response. One thing about celiac is
that there really
needs to be more awareness of how serious a problem that it is. Here many
people think it
is just a fad diet. It definitely isn’t In addition to the ataxia, I have
even had a brain
aneurysm as a result of the celiac.

Life is not always a bowl of peaches as the saying goes—but it sure can
have joy and
community in it . This is why I was so glad to find this group.

Have a super wonderful day,
Your friend Marcille

:slightly_smiling_face: I’m glad you are now safe Marcille. And, I wish you all the best with your work of creating awareness in your community :slightly_smiling_face: xB