Re: unknown pancreatitis

September 6, 2002

-Dennis,

Although I am an admitted alcoholic I do not believe this was the

sole cause of my disease. Besides various chemicals I have used that

are known to cause pancreatitis and panc cancer I also carry a gene

that causes Batten's disease which is a neurological degenerative

disease that progresses in plateaus with children and adults.

Thankfully I've caught the attention of a researcher that wants to

study this link. Apparently this gene like the CF gene can cause

pancreatitis. I talked with my father's nurse this evening and she

said she would try to find the Dr. that did several GI series on me

when I was a preteen and early teenager. The test results came back

negative as far as I know but my dad was a surgeon and suspected

there was something wrong...wish I could ask him personally but he

passed 4 years ago. As I remember I would have severe pain after

eating when I was around 8-9 years old but I was a big eater and most

people (especially my mom) passed it off as either not wanting to go

to school pain or simple gastritis from over indulging in food.

By the way...from everything I have read...less than 5% of

alcoholics develop cp. I personally feel that that excuse is a cop

out generalization for Dr's to give when they can't pinpoint a direct

cause.

Just a note...a met a gal 26 yrs old when I was in the hospital in

early August. She was finally dx with cp after the Drs accused her of

being alcoholic (she has never drank alcohol..I know from her medical

records and reliable sources), drug addict etc. etc. Her OB/GYN Dr

went as far to do a total hysterectomy when there was no obvious sign

of any gyn problems. She had her gallbladder, spleen and appendix

removed also. Seems her pain started in her 3rd month of pregnancy

with her 2nd child 5 years ago.........with all of the signs and

symptoms...one would think that one of the Drs that is treating me

would have a light bulb go off in his head and figure 2+2=4. She's

had the same progression as I have had with elevated enzymes to

suddenly low amylase & lipase levels ........

Just my point of view.......There is no way for anyone to be

diagnosed without having all avenues explored. when you go to an auto

mechanic...they put your car on a machine to locate the problem or

problems.....genetic testing is a great suggestion but not the end

all be all.........

N'Awlins Gal

-- In pancreatitis@y..., " runthefox65 " wrote:

> This would probably be the place to spill my guts about everything

I

> have gone through in last ten years...You just wouldn't believe

it.

> I am going to save some of you alot of needless surgeries, cat

> scans, x-rays, etc....and possibly some hope for those of you who

> are not alcoholics, heavy drug users, or eating only fat for

> breakfast, lunch, and dinner...After ten years and 50 pancreas

> attacks later, (i am not being sarcastic), I finally know why I

keep

> having these attacks..see, not only did my physician not have a

> clue, but my girlfriend just happened to run across it on the

> internet..and she has been ramming this info that she found down

> everyones throat until they finally gave me a genetic test and

found

> out that I had a mutated cystic fibrosis gene which is causing my

> pancreatitis. Now let me tell you, that noone in my family has

this

> disease and I would never, ever, ever, have went that direction on

> my own since it is not that common. Only now, since they have

> figured this out, (After they have put you through the wringer and

> made you stick to special diets, cut out certain foods which were

> originally thought to be triggers, keep diaries of everything you

> ate or did, accused you of being an alcoholic, or tried to make

your

> family believe you were a closet alcoholic)they have tested more

and

> more people and found that there are more people who have this gene

> than they thought...BE FIRM...Ask your doctor if he knows anything

> about this and if not..DEMAND a rx for a genetic test. Don't just

> accept that you have this and will never know why..I wouldn't have

> made it this far if I continued to let them decide for me what to

> do..after all, they tried for 10 YEARS and couldn't come up with

> anything....so on your next visit, ASK just for the heck of

> it...Some of you will be very surprised

>

> Happy Testing, Dennis

September 6, 2002

Dennis,

I have this C/F form. It has a xy relationship. Which some how was in

our mothers. My mother passed away before I had this information. She

had this weird sickness they could not figure out. They thought early

it was TB but is was not. I had to go for bloodtests and xrays when I

was a child. Nothing ever showed. They just dropped it. They should

have been on the C/F line, I am positive it would have shown. Now

knowing the way it works I went to my daughters and had them tested.

They showed positive also. My oldest daughter had a daughter and this

is the end of the line point. If my daughters have no sons, this ends

the cycle of pain. I wish my mother could have held out till I found

this out. She may have well be living right now.

I urge you buddy, get your mom checked if she is still living. Get

your daughters checked if you have any. I used the Genectics

department at UNC Medical. They paid my way and put me up in a nice

hotel. I ran a lot of test, went over my history. Things locked in

place and the C/F relation was named. What is so bad is that the

genes control when the attacks happen. In the meantime we must try to

avoid the chronic daily attacks. I think the future here is gene

research. It may not help us but may future cases. Would it be nice

to benefit also? I need to make contact with them soon. My main

contact does not seem to be there. They are all nice there.