18 and stuck with what to do?

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Good advice. thanks

When I went to the doctors I didn't say anything about not wanting to see a neurologist or get tests done. I feel as though Im never going to get my freedom back.

My mom is starting to (not irritate me) but concern me. Why video tape it? Sorry if that sounded rude but what good will video taping it do?
My nephew has grand mal seizures all the time and I was alone babysitting him at the age of 11 when he had his first. I had never seen one before and it was scary as hell.
 
If you videotape it, it gives the neuro a good idea of what exactly he's treating. That, and if you watch and see what is happening when you seize, you might understand where your mom's fear is coming from. Sometimes what we think we look like and what we actually look like when we seize are two different things.
 
Well thanks for the idea. I have a question to ask. Well more of me explaining my seizures. I get all tingly, I lose sensation in my hands and feet, I sometimes get a high pitch sound in my ear, is this all normal?
 
Yes, those are normal sensations with seizures. There are many kinds of sensations that people experience, often related to the part of the brain where the seizures originate.
 
Gall bladder disease or malfunction is often associated with celiac disease. It can cause pain in the upper right quadrant of the abdomen, just at the lowest rib on the right side. In one study of 1300 celiacs in Canada, 9% indicated that gall stones were the earliest presentation, sometimes followed by many years prior to correct diagnosis of their celiac disease. In another report, Dr. Kozlowska indicated that 13 of the 41 newly diagnosed celiacs she investigated were suffering from atresia, a condition which is a partial or complete blockage of the bile duct.

CCK (cholecystokinin) is the hormone responsible for gall bladder contraction. The bulk of this hormone is produced in the duodenum.

Active celiac disease would be likely, then, to cause a reduction or a cessation of duodenal production of CCK. A radiologist in Hungary is currently researching this problem. In private correspondence, one gastroenterologist reports having found (accidentally) a gallstone in a 12 year old girl who had active celiac disease.

The 30% incidence of atresia among celiac children, as reported by Dr. Kozlowska, would suggest an even higher number among adults with active celiac disease. Given the low level of clinical suspicion for celiac disease in North America, it would not be at all surprising if a large portion of patients with gall bladder disease were suffering from occult celiac disease. Future research may reveal that gall stones and atresia are only symptoms of celiac disease.

I did a Medline search on cck and celiac disease. I got 65 hits. Researchers repeatedly identified a connection between celiac disease and gall bladder malfunction with such comments as: Thus the already impaired fat absorption in celiac sprue is magnified by the lack of bile delivery.....; and We conclude that there is a reversible defect of gallbladder emptying and cholecystokinin release in celiac disease. and Cholecystokinin (cck) release and gall bladder emptying in response to a fatty meal are completely abolished in celiac disease. and the abnormally decreased gallbladder contraction in celiac patients is the result of endogenous cck secretion and not a lack of end-organ responsiveness to cck.

There just isnt much ambiguity there. If youve got celiac disease, you have gall bladder malfunction, of the sort that may well develop into atresia and gallstones.

Upon receiving a diagnosis of gall bladder disease, whether gall stones or atresia, one might be wise to request a blood test for celiac disease. The anti-endomysial antibody test is currently the most reliable and available test.

Now, given the low level of clinical suspicion for celiac disease, I anticipate the suggestion that absent gall bladder emptying, atresia, and gall stones might occur in the absence of celiac disease. I did another Medline search, and I cant find a single study that has tested atresia patients or gallstone patients for celiac disease. My answer to the suggestion that gall bladder disease may occur in the absence of celiac disease is that there is no evidence to support such a contention. Considerable evidence exists, however, which points to celiac disease as a likely cause of gall bladder malfunction, atresia, or stones. As for childhood gallstones, there appears to be only one answer.... it is associated with celiac disease.

A view that incorporates the association of gall bladder disease, and celiac disease, but does not preclude the above, has been expressed by Dr. Joseph Murray, of the University of Iowa, who is a gastroenterologist specializing in treating celiac disease. He believes there are several triggers that can activate Celiac disease in genetically susceptible people. One of them is: Surgery, particularly GI (gall bladder, etc.) In any case, the connection between celiac disease and gall bladder disease is well known.

http://www.celiac.com/articles/119/...-Celiac-Disease---By-Ronald-Hoggan/Page1.html

Seizures are also connected to celiac disease in many that have the disorder.
 
Hi Shelby, welcome to the forum. :hello:

Are you aware that there are different types of seizures? Most people only think about tonic clonic (aka grand mal) seizures when they think about the word "seizure", but there are many types and some are very subtle. It's possible that you are (and have been) experiencing more seizure activity that you realize. You really should see a neuro and get some EEG testing done to find out what's happening in your noggin.

Recomended reading:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

more epilepsy 101 threads
 
To Everyone

Wow, that celiac thing is quite intriguing. I never would have thought of that!
Yes I am very aware of the different levels and types of seizures. I am contemplating doctors for many reasons. I am considering my options and thinking about what to do next.

I had another seizure last night and it was defintely an out of body experience for me. I felt as though I had complete control of my brain just none over my body! I could hear and see everything that was happening just couldnt do anything about it.

My mom still does not understand my side of situation. Some one help with my mom!! I need advice on what to do with her! What do I tell my mom to do when Im seizing...she feels helpless and I know that feeling but is there anything that she really can do?
 
I think seizures are so disorienting and strange that it's great if the caregiver can be calm and reassuring for you post-seizure. If you're having a grand mal, then your mother should make sure you're not falling or hurting yourself as you seize, help you into a comfortable position as you ease out of it, and tell you what happened when you become fully conscious and alert. If she's up to it, you could ask your mother to take notes on what happened during the seizure, so that the doctors have additional information to go by.
 
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