<<Disclaimer: Verify this information before applying it to your situation.>>
Finally! I have some time to post the summary of my inquiry about celiac
and seizures. Sorry it's so long, it was hard to summarize with so much
good info!
Because of the below information, my daughter has (reluctantly) agreed to
an EnteroLab stool test for gluten sensitivity and fat absorption. In
fact, her 2 brothers have agreed to be tested as well. FYI, my 2 sisters
and their kids and one of my brothers are all gluten sensitive also.
A million thanks to those who helped out!!!
* My questions were- Is there any evidence that gluten can damage
specific portions of the brain? Does anyone have an experience with
seizures stopping after going gluten-free?
One person referred me to the older postings on "neurological symptoms" -
these were very interesting.
"In his work, he (Hadjivassiliou) is finding neurological problems
associated with high antigliadin, even if the people do not have actual
celiac disease. He is mostly working on gluten ataxia, but there are so
many other neurological conditions associated with celiac disease,
including epilepsy, that it may possible that these could be associated
with the antigliadin alone and not full-blown celiac disease... By the
way, if her total IGA test is low, then the other IGA-based tests, tTG
and antigliadin IGA, will not be positive. That's why they do the
antigliadin IGG, as a check in case she has low IGA. If she did have all
the above tests and they were all negative, I would be inclined to
believe them and look elsewhere for her problem."(also suggested a food
journal)
My son had a few real seizures before we were fully gluten free. He has
had none since. (...the gf diet also eliminated malabsorption) It
certainly made a difference with his migraines which have a behavioral
component as well, but the truly saving grace for him are the
prescription pancreatic enzymes he takes with each meal and snack... My
guess would be that regardless of the root cause of your daughter's
seizure disorder, it is very possible that a gf diet would help her to
feel better (my son's personality is gravely affected by gluten...).
"There most certainly is, just do a google search combining epilepsy and
gluten. My daughter has benign occipital lobe epilepsy caused by gluten
ingestion. Actually, part of her brain has calcified."
"Yes, it's a poison, and tell her she can get cancer anywhere in her body
from gluten, I live on TPN no eating or drinking from too much damage."
One person suggested that the Ttg and EM tests were false negatives.
"DogtorJ.com has info on epilepsy and gluten intolerance." -Very
interesting, about humans and pets.
"There is information on seizures & brain calcification mentioned at
http://www.aafp.org/afp/980301ap/pruessn.html You can also do a search
for the original article at www.celiac.com"
...in our family, 4 of us had negative blood testing but all had positive
biopsies and GI symptoms. Has anyone tested your daughter's circulating
IgA levels? If they are low, the blood tests will not be valid since
they depend upon an IgA response... The gene testing will not give you
definite proof one way or the other... Many confirmed celiacs do not
have the "typical" genes and the whole picture has not been identified.
Biopsy will give you the best answer and that is what is there today, not
what may occur down the road. Sadly, no easy solutions... I believe Dr.
Fasano at U. Maryland has written on seizures and celiac.
"My son has the neuro symptoms with CD. Was originally diagnosed with
MS--when actually it was CD. I would get Fine's tests as they test for
intestinal antibodies... The stool sample test would be much better in my
opinion and of course the gene test would tell you if it is even
possible."
You might try reading the book "Dangerous Grains". There are people who
think the ketogenic diet helps seizures mainly *because* it is gluten
free, but no one knows for sure.
I would suggest you to ask your questions at this other excellent GF
forum: http://forums.delphiforums.com/celiac/messages
Don't forget that the tests are not always dependable. Dr. Fine's test
may give you better results.
http://www.worldwidehealthcenter.net/article.php?article=115
http://hnn.us/comments/5299.html
http://www.niddk.nih.gov/health/digest/pubs/celiac/
http://healthlink.mcw.edu/article/956622658.html
On the www.celiac.com website I just read yesterday that about half of
epileptics who did not respond to medication were cured by a GF diet.
There was also mention of Ca deposits going away. The researcher quoting
the article said it was too much for him to believe, but I had JUST READ
an article saying that Vit K had something to do with preventing Calcium
from depositing in soft tissues where it didn't belong. Vit K is
generally def. in celiacs.
Could have been birth trauma, but then celiac could have made it worse
with possible Ca deposits, or low levels of antioxidants to prevent
oxidative damage following the injury. Kids get hurt sometimes and their
parents may never hear of it.
"...certain neurological issues are connected with insufficient intake of
fat, and that could happen in a malabsorption situation even with normal
intake - I wonder if that might be a clue to check her absorption, though
I don't know specifically if seizure disorders fall in that realm."
*Support summarization of posts, reply to the SENDER not the Celiac List*
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