Re: Comments on Genetic Testing Results??-marianne

October 17, 2004

nn,

What are your child's neurolgical symptoms? My son is one of the rareities

whose CD presented in a neurological manner primarily and a gasto-manner

secondarily. He is DQ-8.

susan

October 17, 2004

His main neurological problem is migraines. He has had an EEG and MRI

and a bunch of other tests and his brain function is normal, no other

problems that they can find. He does have some occasional nerve pain

that might be neurological, but hard to figure out. It is not so bad

now that he is gluten free. His headaches are just happening too

often. I read a few months back in the Free Newsletter from

Celiac.com that with the neurological problems caused by celiac the

length of time between onset of symptoms and starting the gf diet will

affect the total healing process. So if you start having neurological

problems a few months before starting the diet you will most likely

heal completely and the headaches, etc will go away, but if it has been

years then the headaches might get better, but they might never go away

completely. It depends on the individual. I have been getting

migraines for more than half my life, and I can tell you that they have

not gotten better after nearly a year on the gfcf diet. My son has also

been getting headaches since before he could talk. He used to grab his

head and cry. So the likelyhood of his migraines disappearing after

more than 6 years of problems is pretty small, but not impossible.

There is always hope! :-)

My son also has alot of the gastro symptoms and had the most intestinal

damage of all of us. The poor little guy has just been put through the

ringer!

What are your childs symptoms?

God bless,

nn

ozonasusan@... wrote:

nn,

What are your child's neurolgical symptoms? My son is one of the

rareities whose CD presented in a neurological manner primarily and a

gasto-manner secondarily. He is DQ-8.

susan

October 18, 2004

nn, I got migraines (severe headache for days but not the flashing lights) ever since I was a teenager. Now I am in my 60's. This year I went gluten-free. Shortly after that I stopped having migraines, and I only get them now when I have had accidental gluten.

Jo Anne

Re: Comments on Genetic Testing Results??-marianne

His main neurological problem is migraines. He has had an EEG and MRI and a bunch of other tests and his brain function is normal, no other problems that they can find. He does have some occasional nerve pain that might be neurological, but hard to figure out. It is not so bad now that he is gluten free. His headaches are just happening too often. I read a few months back in the Free Newsletter from Celiac.com that with the neurological problems caused by celiac the length of time between onset of symptoms and starting the gf diet will affect the total healing process. So if you start having neurological problems a few months before starting the diet you will most likely heal completely and the headaches, etc will go away, but if it has been years then the headaches might get better, but they might never go away completely. It depends on the individual. I have been getting migraines for more than half my life, and I can tell you that they have not gotten better after nearly a year on the gfcf diet. My son has also been getting headaches since before he could talk. He used to grab his head and cry. So the likelyhood of his migraines disappearing after more than 6 years of problems is pretty small, but not impossible. There is always hope! :-) My son also has alot of the gastro symptoms and had the most intestinal damage of all of us. The poor little guy has just been put through the ringer! What are your childs symptoms?God bless,nnozonasusan@... wrote:

nn,What are your child's neurolgical symptoms? My son is one of the rareities whose CD presented in a neurological manner primarily and a gasto-manner secondarily. He is DQ-8.susan

October 18, 2004

Jo Anne, That is good to know that you were able to get rid of your

headaches. I say this as I sit here with a headache! It isn't too

bad, and I am wondering if something else might be causing it, since I

have not had a gluten accident in well over a month. I am so darn

careful and I just wish the headaches would stop... I do get the

flashing lights(occasionally), nausea(frequently) and extreme light and

noise sensitivity(always) with my migraines. One time I even had this

loss of central vision for about 20 minutes. I was at the grocery

store and I couldn't hardly steer the cart without running into

something. I only had periferal vision and I was about to call for a

ride home, since I couldn't drive that way, when it suddenly cleared.

It freaked me out. I went to the eye doctor and he said that my eyes

were fine, it was migraine related. It hasn't happened again, THANK

GOD!

God bless,

nn

J. wrote:

nn, I got migraines (severe

headache for days but not the flashing lights) ever since I was a

teenager. Now I am in my 60's. This year I went gluten-free. Shortly

after that I stopped having migraines, and I only get them now when I

have had accidental gluten.

Jo Anne

-----

Original Message -----

From:

fernandofamily@...

To: SillyYaks

Sent: Monday, October 18, 2004 12:14 AM

Subject: Re: Comments on Genetic Testing

Results??-marianne