<<Disclaimer: Verify this information before applying it to your situation.>>
Hello Again - This is the second try for this summary as the first sending
was abridged.*
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The responses to my inquire for the above and gluten ingestion were all
were supportive and very kind. I've decided to forego the poisoning - whew!
Here is the synopsis:
1) I also had slurred speech before. I just realized it hasn’t happened in
quite a while and I’ve been GF for about 1 ¾ years now.
One more thing – if you’re going to poison yourself – make it worth it!
Have a big hunk of cake or a delicious slice of pizza! Use something you
really miss.
2) I want to give you a link to a wonderful forum called
Brain Talk, where there is a wealth of information
(and answers) on gluten ataxia, and neurological
issues, testing, symptoms, tec.. We have many experts
on this subject; and lots of filed medical
data/studies and info - it's a very kind and
compassionate group.
Also - lots of yummy GF recipes.
Here it is::
http://brain.hastypastry.net/forums/forumdisplay.php?forumid=141
3)I would not eat the gluten if I were you. You already know it bothers
you, and the ataxia could also be caused by something else going on with
you (but I hope not for your sake). I hope you don't have to "prove" this
to others, but realistically I know if you are applying for any type of
disability benefit you probably do. Good luck.
4) Just run a Medline search and you will find many references to peer-
reviewed research that parallels your experience.... but many of those
patients do not experience the recovery from their ataxia. One member of my
support group continues to deteriorate despite his careful attention to his
diet.
5) I, too, have the ataxia symptoms. I had MRIs from before I was dxed
with celiac disease, so I was not gf then. My neurologist said he could
see damage, but it is my understanding that the damage can clear up with a
gf diet. Also, I wouldn't want to try glutenating myself for that, as it
is also my understanding that it is like gut damage--you might have to have
gluten for several weeks or months before the damage to exhibit on the MRIs.
Good luck, I know what you are going thru with this. Hope you find what
you are looking for. My neurologist was mostly clueless and didn't think
the damage was related.
6) I was tested last year for MS due to neuropathy, etc., after eating
several times at P.F. Chang's. So, eating so-called GF restaurant food
is another option, but that's like recommending torture, so I feel weird
saying it! (Incidentally, the neurological symptoms went away within
months of not eating at the Chinese place, and I was negative for MS.)
7) Hi, When I was a kid it caused me to be learning disabled. I had a hard
time thinking of words to express myself. My kids always finished my
sentences because I would zone out before finishing a thought. Yes gluten
can definitely cause brain problems.
8) I have all sorts of neurological soft signs when I eat gluten, including
eye tics, leg tremors.
My children get slurred speech and ataxia.
9)I hope you don't get any unkind responses. That must be very frustrating
for you. I hope someone can tell you if the ataxia would show up on the
MRI. How long do you have symptoms after having gluten? I think if I knew
if would help in the diagnosis of my problem I would eat gluten and I would
have pizza and licorice snaps! It might even help me to associate being
sick with the Snaps because I miss them a lot and don't have a substitute
for them like I do for other things.
Good luck. I know how hard it is to try to find out what's wrong with
you. I thought there was something wrong with my brain - possibly white
brain lessions since that can be caused by gluten in celiacs. I had a MRI
and it said my brain was fine. My symptoms were lightheadedness, blurred
vision and cognitive problems not to mention fatigue that could really be
explained by my other problems (Rheumatoid arthritis and long time type 1
diabetic not so well controlled). Well the neurologist suggested a sleep
study (I do snore loudly) and I have severe sleep apnea! So one thing I
have learned is that sometimes there is more than one solution to your
medical problems. The blurred vison was a problem with the way my eye
responds to light (decreased foveal reflex
10) I hope that the MRI leads to some conclusions for you! I also have
terrible cognitive disabilities from this without solution yet! Some people
have responded to me to look into multiple sclerosis and fibromyalgia -
something you may want to ask your neurologist about.
Hmm, about the intentional gluten I know what you''re thinking ... I've
seriously considered it before too! If I were going to do it I'd go full
throttle, fresh toasted bruggers bagel with cream cheese, cheezeits,
chocolate cake, and a good muffin or donut from dunkin. With such a small
amount of gluten producing a strong result, it seems to me that you would
get the same amount of damage with a large one time ingestion. I don't
know. I just figure, this is the only time you'll ever do it, so get in
whatever it is that you miss, even if only one bite.
I wish you strength in continuing to pursue adequate diagnosis and hope
that the MRI / other tests lead to new and useful conclusions for you!
I am very curious to find out what others respond as well and will look
forward to reading your summary.
11) Here is an article about MRIs:
http://www.mercola.com/2001/aug/15/mri.htm
>I'm also considering ingesting gluten to trigger symptoms to coincide with
>the test. Does anyone know if the brain function that presents as ataxia
>will show up on an MRI?
Here is a site to show you what shows up:
http://www.nlm.nih.gov/medlineplus/ency/article/003796.htm#What%20the%
20risks%20are
>It takes only a few molecules of gluten to trigger me - any suggestions
>about what I should poison myself with?
Personally, I would not get the MRI. I know that gluten is my problem plus
whilst being on a gf diet, I found out that dairy, nuts and seeds and their
oils, cinnamon, mold, soy, grainfed meat, some olive oils cause me problems
like ataxia.
If it were me I would try a lot of elimination of allergens before I was
assaulted with a machine as dangerous as an MRI machine. Forget it! A diet
is safer.
>The thought of eating gluten gives
>me fright -
I know. Me too! I would be extremely sick. It would not be worth it for me.
End of part 1
* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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