Newbie

[GILBERTO]

Am new to the group. Found you through a Dystonia group on MSN. I have had Torticollis (Cervical Dystonia) for about 4 years. I have gone through the Botox treatment and the DBS surgery--all no joy. I am next considering denerveation surgery, which is not reverseable like the DBS. I came upon this site almost by accident. I first read the article by DR. Lewey. What an eye opener. My 19 year old son has Celiac Disease . My wife has been tested for it, I have not. She tested negative for it. I plan to be tested and try a trial gluten free diet, which won't be hard because my son is on it already. Can anyone give me any advice? This is the route that Lewey suggests.

Regards,

Gil Oakes

[annelb]

Hi Gil, You may want to go over to the Gluten Sensitivity/Celiac Disease forum here on BT. I am sure you will get more answers there. http://brain.hastypastry.net/forums/forumdisplay.php?f=152

Dr. Lewey is one GI doc who truly understands the whole spectrum of gluten sensitivty. Most doctors will look only for celiac disease, but gluten can cause problems without causing flattened villi. Many people with neurological problems have non-celiac gluten sensitivity.

Another good place to learn more about gluten sensitivity/celiac disease is The Gluten File http://jccglutenfree.googlepages.com/

If you want to be tested by blood and biopsy, then you must continue to eat gluten until tested. Those tests are based on eating enough gluten long enough to cause damage great enough to be measurable by the doctor. There is a stool test www.enterolab.com . You do not have to be eating gluten to have this test, but this test does not diagnose celiac disease. It can only tell you if you are making antibodies to gluten. Did you read Dr. Lewey's article about getting tested? http://ezinearticles.com/?Diagnosing-Celiac-Disease-and-Gluten-Sensitivity&id=239028

Hope to see you over at the gluten sensitivity forum.
Anne

[GILBERTO]

Anne ,
Thanks for the info. I hope to use it wisely.
Gil