NeuroTalk Support Groups - Celiac Disease and Seizures- Mystery Diagnosis on youtube

Quote:

Originally Posted by jccgf (Post 509272)

Here are some youtube excerpts of a Mystery Diagnosis show on a little boy with neurological manifestations of celiac disease [autoimmune disease caused by dietary gluten... wheat, barley, rye] He had complex partial seizures, as well as speech and developmental delays. He had no gastrointestinal problems. His seizures resolved almost immediately on a gluten free diet. Unfortunately it took four years to be diagnosed... and his MOTHER has celiac disease!
Please remember... you can have gluten sensitivity that cause seizures without testing positive for celiac disease, and for some children, casein and soy sensitivities are also a problem. If there is any family history of autoimmune disease... all the more reason to consider this possibility!

I have Celiac. I was diagnosed in 2009 after 2 years of pain in the stomach. Since then, I have been complaining to my primary care physician and to "specialists" of joint pain, rash, and seizures. I have also been sent to the ER because of unintelligible speech-slurred, jerky. The speech comes and goes, but gets worse with stress. My primary care physician, neurologist, and a rhumatologist did MRIs and CT scans and all said it is all in my head, probably stress.

I recently went to my gastroenterologist for a celiac check. I was told the speech could be celiac related. I am very careful about my diet, but do find I make mistakes once in a while (I recently got hit with eggnog that has mono and diglycerides. Apparently they can use wheat as carriers, but since it is incidental, they do not have to list it on the ingredients.) He is the oen who says I am not crazy.

I recently got checked out for epilepsy (because of the seizures and speech disorder), and was told it is unlikely. There is no physical data to indicate epilepsy. The neurologist questioned the validity of the Celiac diagnosis even though it was determined via blood tests and gastroscopy. He told me that seizures were very unlikely to be caused by other than epilepsy or psychological reasons. He votes for psychological. I vote for the celiac stress causing the psychological.

Can Celiac cause hot flashes, itchy rashes that come and go, joint pain, intestinal cramps, speech problems, confusion, memory problems, and non epileptic seizures? All of which come and go alone or together? I am suspecting that dairy might be involved as well.

Any idea what I should do? I have paid for counseling and mental health for about a year and a half with no results excecpt a convenient way to let off steam. I do not want to throw good money after bad because of a misdiagnosis, but I do want to get well.
Please help.