bowel disorders

[Guest guest]

Adrienne

Your post reminded me that I also was thought to have Celiac about 3 years

ago. I had the blood test and it was like yours, inconclusive. Since I

already had the mito diagnosis, the doctor didn't think it necessary to do

the biopsy, but would if I continued to have problems. I now have my

dysmotility under control and have no problems. I was also diagnosed with

lack of bile from the gall bladder and took pills of bile (yuck) for a

couple of years. I was also diagnosed with probable Irritable Bowel

Syndrome. I had completely forgotten these things since they were wrong.

laurie

>

> debbie,

> I was dx'd with fibromyalgia 4 yrs ago just before being dx'd with lupus and

> they thought i had celiac also just last yr but now they arent sure about

> that, i went gluten free for awhile to see if it would help and it did for 2

> months then after that i just got really sick so i stopped it and started

> feeling better. they said that the blood work showed i had 2 of the 3

> antibodies for it and my genes showed i was suseptable to it, then they did a

> biopsy and said it looked like my filli were damaged before but had healed

> possibly because of being on prednisone. after they double thought the celiac

> thats when someone started to think mito so have been looking into that ever

> since then. all these illnesses do have alot in common though, gotta wonder

> if someway are they all connected (all autoimmune or something?) i know ive

> hear fibro and lupus be mention here before but first time someone said

> something about celiac i think. just gotta wonder which dx's are right and

> which ones arent- gets so confusing after youve been dx'd with a dozen or

> more things lol. hope they find something to help, my dr seemed to think

> celiac disease was causing the fibro and it would all clear up when i went

> gluten free, would of been nice! maybe the diet will help you in some way or

> another though, sure hope so! keep me updated.

> take care,

> Adrienne

[Guest guest]

laurie,

hey there, i can see why drs think of celiac with us- it does have alot of

similar symptoms. Also i got the irritable bowel syndrome diagnosis about 6

yrs ago when they first said i had delayed gastric emptying and reflux but

didnt look into it anymore for 4 yrs. Had an awful gastrologist then- now i

see several that are good (my local one, and 2 down at UVA 3 hrs away- ones a

motility specialist the other is a gastro-surgeon). I'm glad that theyv'e

finally at least figured i have gastroparesis, dysphagia, pyloric stenosis,

and other gi dysmotility problems. They also say that along with my problem

with gallstones that my gallbladder isnt functioning right. That it has

dysmotility too, do you think that might of been why you werent producing

enough bile? geez, i couldnt imagine taking bile pills, are they trying to

see how fast you will vomit or something? lol I have noticed that my

dysmotility has gotten better since i started coq10, l-carnitiene, and the b

vitamins i started on about 3 mos ago. What do you think has helped yours? I

also take prevacid and trying to find a good nausea/vomiting med (have tried

zofran, phenergan, compazine, etc- either dont work or stop working after

time) Im seeing a surgeon wednesday to discuss getting my gallbladder out,

doing more permanent things for the pyloric stenosis (right now they just

dialate it through endoscopy every 2-3 mos.) and about other things to help

including a feeding tube. Ive been having more problems with vomiting and

with gallbladder pain the past 3 wks. So something needs to be done. have you

had your gallbladder removed yet? my drs have been saying i need it removed

for about 8 months now but keep hesitating on actually doing it, really hate

that, i just want the darn thing out! Hopefully on wednesday ill get new

answers or something. anyways, arent these bowel disorders so fun! lol im

glad youve gotten the dysmotility under control though, hope mine will be

soon (seems to be on the way to it). well, hope your having a happy easter!

take care,

Adrienne

[Guest guest]

Adrienne

I'm glad you have a good team of doctors.

My dysmotility went away after about 50 years of having it when I got my

CoQ10 and Carnitor levels up where they must need to be. When I was off of

them before my muscle biopsy, I was off for a month and the dysmotility was

back. I never knew what it was like to feel " unstuffed " .

I may have had a sluggish gall bladder as it was after my son was born and I

was energy depleted, I'm sure. I still have my gall bladder, but my mother

had hers out due to stones and Lilsis needs hers out. I think this is one of

the few things they haven't tinkered with.

The irritable bowel diagnosis was a lactose intolerance and dysmotility. I

figured out the lactose factor myself.

It is sometimes hard to believe that those little mitochondria can cause us

so many problems. I hope you can get the vomiting under control. This is not

a symptom that I have had to deal with, thank goodness. One week when I had

a bug was enough. I don't know how you and others deal with it on a daily

basis.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Sun, 31 Mar 2002 16:47:11 EST

> To:

> Subject: Re: bowel disorders

>

> laurie,

> hey there, i can see why drs think of celiac with us- it does have alot of

> similar symptoms. Also i got the irritable bowel syndrome diagnosis about 6

> yrs ago when they first said i had delayed gastric emptying and reflux but

> didnt look into it anymore for 4 yrs. Had an awful gastrologist then- now i

> see several that are good (my local one, and 2 down at UVA 3 hrs away- ones a

> motility specialist the other is a gastro-surgeon). I'm glad that theyv'e

> finally at least figured i have gastroparesis, dysphagia, pyloric stenosis,

> and other gi dysmotility problems. They also say that along with my problem

> with gallstones that my gallbladder isnt functioning right. That it has

> dysmotility too, do you think that might of been why you werent producing

> enough bile? geez, i couldnt imagine taking bile pills, are they trying to

> see how fast you will vomit or something? lol I have noticed that my

> dysmotility has gotten better since i started coq10, l-carnitiene, and the b

> vitamins i started on about 3 mos ago. What do you think has helped yours? I

> also take prevacid and trying to find a good nausea/vomiting med (have tried

> zofran, phenergan, compazine, etc- either dont work or stop working after

> time) Im seeing a surgeon wednesday to discuss getting my gallbladder out,

> doing more permanent things for the pyloric stenosis (right now they just

> dialate it through endoscopy every 2-3 mos.) and about other things to help

> including a feeding tube. Ive been having more problems with vomiting and

> with gallbladder pain the past 3 wks. So something needs to be done. have you

> had your gallbladder removed yet? my drs have been saying i need it removed

> for about 8 months now but keep hesitating on actually doing it, really hate

> that, i just want the darn thing out! Hopefully on wednesday ill get new

> answers or something. anyways, arent these bowel disorders so fun! lol im

> glad youve gotten the dysmotility under control though, hope mine will be

> soon (seems to be on the way to it). well, hope your having a happy easter!

> take care,

> Adrienne

>

>

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