Scared/Gluten/Seizures/Celiac
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Don, your article regarding seizures and celiac disease has just about thrown
me for a loop. Could it be that after ALL the treatments, all the
professionals, and the therapys, all the diets, and the vitiamins, all the
drugs, that my son could have Celiac disease. Your articles regarding the
seizures, Is there a certain type of seizure that this goes with. (My son
PDDnos, has absence seizures and/or sub clinical stuff happening every
minute, 24 hours a day, confirmed in Chicago by Dr. Morrell to be bilateral
frontal lobe spikes.)
I have been literally skipping over all this gluten/diet topic for months now
because we have tried the yeast thing with Richard TWICE, the last time
lasted for 6 months, with NO results, absolutely, NO results. But then you
mentioned seizures in connection with Celiac. You see, of all the diets
Richard was on, he never went off wheat. He was on yeast free,sugar free,
salt free, you name it free, bread with both of these diets but NOT Gluten
free.
Now the biggest thing here besides the diet and seizures that I have not
mentioned is the fact that my husband, when he was very small, had celiac
disease. His parents have long been dead, way before I met him. So I have
no way of asking anyone anymore details.
Could this all be a possiblitiy for Richard. I never heard the
neurologist/epileptologist mention anything about cerebral calcifications.
Don, should I forward the Lancet article to him? Should I see what my
pediatrician says about it?
Richard is otherwise a very healthy child. Has not been sick with all those
ear infections since he had is tonsills(sp) out at 6years. He is 14 now.
Should I push the pediatrician and/or specialists for some tests? Is there
one paticular test to screen for more tests?
Thanks you a million times.
Ann Briggin
P.S. Richard, by the way is doing much better. He has been on prozac and
wellbutrim lately and OCD has gone down a bit, attention up a bit, seems
happier, hardly any aggression lately.
P.S. again The VERY LAST THING I want to do is put Richard on another diet
without a very clear picture of what is wrong. He is going through PUBERTY
and eating me out of house and home and the last thing I want to do is put ME
through another diet with him again. I hate to cook and for that matter I
eat like a bird anyway. On the last diet 2 years ago or so, Richard go more
obsessive than ever ON the diet, talking about what he could have and could
not have. Boy, am I really ready for this?????
Don Wiss
>Don, your article regarding seizures and celiac disease has just about thrown
>me for a loop. Could it be that after ALL the treatments, all the
>professionals, and the therapys, all the diets, and the vitamins, all the
>drugs, that my son could have Celiac disease.
Possibly. But if so, it only gets better if one can maintain the diet.
> Your articles regarding the
>seizures, Is there a certain type of seizure that this goes with. (My son
>PDDnos, has absence seizures and/or sub clinical stuff happening every
>minute, 24 hours a day, confirmed in Chicago by Dr. Morrell to be bilateral
>frontal lobe spikes.)
My background is more engineering, economics, and bond math. I don't
understand all this neurological stuff. There was a medical conference
April 10-12 in San Marino on this very topic of seizures and celiac
disease. I have seen slides of scans of these calcifications put up by Dr.
Markku Maki at the recent celiac medical conference in Baltimore. The only
person in the US that I know attended in San Marino is Karoly Horvath, MD
<khor...@UMABNET.AB.UMD.EDU>.
>I have been literally skipping over all this gluten/diet topic for months now
>because we have tried the yeast thing with Richard TWICE, the last time
>lasted for 6 months, with NO results, absolutely, NO results. But then you
>mentioned seizures in connection with Celiac. You see, of all the diets
>Richard was on, he never went off wheat. He was on yeast free,sugar free,
>salt free, you name it free, bread with both of these diets but NOT Gluten
>free.
I also follow the Yeast-L mailing list. I'm not convinced there is a
systemic yeast infection. It just seems more likely to me that the Candida
yeast is taking advantage of a weakened host, with gluten being the
weakening agent. Confusingly, gluten and yeast work hand-in-hand and are
often used together. I find Dr. Crook's explanation for why the dead yeast
are still a problem after being killed in the oven to be empty. And his
main predictor of being a candidate is having taken a course of
antibiotics. Who hasn't?
>Now the biggest thing here besides the diet and seizures that I have not
>mentioned is the fact that my husband, when he was very small, had celiac
>disease. His parents have long been dead, way before I met him. So I have
>no way of asking anyone anymore details.
Celiac disease is very genetic. It is also lifelong and your husband would
still have it, assuming he was correctly diagnosed when young. Do you know
what was the cause of his parent's death? Was it digestive system related?
>Could this all be a possiblitiy for Richard. I never heard the
>neurologist/epileptologist mention anything about cerebral calcifications.
> Don, should I forward the Lancet article to him? Should I see what my
>pediatrician says about it?
You certainly can forward the articles to them. The more they know about
this connection the better they will be able to help others.
Where do you live? The pediatric gastroenterology department doing the most
research into celiac in the US is the University of Maryland at Baltimore.
410-328-0812 can get you started.
>Richard is otherwise a very healthy child. Has not been sick with all those
>ear infections since he had is tonsills(sp) out at 6years. He is 14 now.
I find it interesting that removing tonsils clears these up. As I had mine
out very young, maybe that is why I don't remember having many ear
infections.
>Should I push the pediatrician and/or specialists for some tests? Is there
>one paticular test to screen for more tests?
The establishment line is you test before you diet experiment. They are
also dogmatic in their belief that the biopsy is the only gauge of the
condition. I think everybody should get the three or four antibody tests
done ASAP and get the actual numbers back for yourself to analyze. These
methods are discussed in the GET CELIAC BLOODTST available from
LIST...@SJUVM.STJOHNS.EDU.
One can also look for peptides in the urine. This is discussed in the
middle of Lisa Lewis <li...@pucc.princeton.edu>'s web page. I or she can
e-mail it (46K) if one doesn't have web access.
http://www.princeton.edu/~lisas/gfpak.html
>Thank you a million times.
You're welcome.
Don Wiss.