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Can you ever be 100% sure it is IBS?
      #64320 - 04/23/04 01:49 PM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

On page 2 of Heather's book she lists all the things you should have ruled out before you can be sure you have IBS. I am having trouble ruling out the following:

Celiac Disease
Endometriosis
Crohn's (if you don't have blood (sorry) in your stool can you rule this out definitively??
Food Allergies

It is exhausting trying to fix yourself if you are going between 3 or 4 diseases and aren't even sure which one you have. Does anyone have some words of wisdom on the above?

Cindy

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Re: Can you ever be 100% sure it is IBS? new
      #64329 - 04/23/04 03:01 PM
jules

Reged: 06/17/03
Posts: 1140
Loc: Michigan

Your doctor should be able to do tests to rule out the above.

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~jules



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Re: Can you ever be 100% sure it is IBS? new
      #64331 - 04/23/04 03:46 PM
pearlmaj

Reged: 03/31/04
Posts: 95


Quote:

Your doctor should be able to do tests to rule out the above.




Except that the food allergy tests are unreliable. And, of course, the fact that you could have IBS along with something else. So the best test (after you rule out the more serious stuff with tests) is to watch your reactions to what you eat.

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Re: Can you ever be 100% sure it is IBS? new
      #64339 - 04/23/04 04:19 PM
FutureDoc

Reged: 04/02/04
Posts: 58


I'm kinda in the same boat you are. What I'm trying to do is just test and watch my body. After all nobody knows it better than I do! I have noticed that I feel better if I don't eat wheat, so I stay away from it. As far as endometriosis, I'm gonna try the pill and maybe that will help. A pain diary helps too. Write down what days you have pain. Then you can identify a cyclic pattern if its there. Food allergies? Try a food diary. Its helped me. Not sure about Crohn's though. I wonder about that too. It helps sooo much if you write things down. Then you can go to your doc and have solid evidence and it may help them diagnose you. Write down your bowel movements too if you have to! Hope this helps. I know exactly how you feel. I wish there was a way to test for everything all at once! That would make things so much easier and give so many people so much peace of mind. Good luck!

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Re: Good advice new
      #64356 - 04/23/04 05:05 PM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Thanks, it is hard. I would like to be devoting my time otherwise but.... yeah, you should see my date book marked with my bodily functions...oh brother!!! But I think that you are right about tracking things. I will give it a whirl and good luck to you too.

Cindy

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Re: You would think so.. new
      #64357 - 04/23/04 05:09 PM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

But not the case. They say it sounds like endometriosis but I don't want to put you thru a laporoscopy so lets just put you on this medecine or your bloodwork suggests celiac but your endoscopy doesn't, just go wheat free and see what happens. So you try these things and nothing fixes your symptoms 100% and you just end up more confused.

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I agree. nt new
      #64359 - 04/23/04 05:13 PM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine



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Re: Good advice new
      #64373 - 04/23/04 06:33 PM
FutureDoc

Reged: 04/02/04
Posts: 58


My calendar is ridiculous too! Every bodily function is on there! If someone who didn't know me ever saw it they would think I was kinda crazy but you gotta do what you gotta do!

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Crohn's new
      #64491 - 04/24/04 03:32 PM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

a colonoscopy should give your doctor an idea whether you have Crohn's or not. make sure you have a colonoscopy if you haven't had one yet!

your GYN would diagnose endo... make sure you're seeing ALL of your doctors!

as for the others, you can get a good idea about the gluten problems through the blood test and through an endoscopy, but they're not definitive. my bloodwork was negative, but i had a hunch. i eliminated wheat and was almost immediately better. now, if i cheat (which i never do bigtime i just sneak the occasional Tofutti Cutie! ), i can't feel it! it's impossible to explain, but i can tell when that wheat is in my tummy. UGH. now i just avoid it. you can try elimination diets on your own (but talk to your doctor about it first, or a nutritionist. you need to make sure you're not eliminating vitamins and minerals and other goodies that you NEED!). stay off a questionable food for 2 weeks or so, then add it back in. if your symptoms had lessened or disappeared while you were "off" and came back or got worse when you go back "on" well... ya may be onto something!

good luck!

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How often do you repeat tests? new
      #64524 - 04/25/04 04:49 AM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

I had a lap 10 years ago, no endo but now gyno thinks I have it but does not want to do a lap????? I am tracking my symptoms on a calendar now to show when they are most awful.

Had a colonoscopy 7 years ago with no Crohns, how often do you have to repeat this test to be sure it is nothing else but IBS?

For the food allergies I am getting the message about a food journal and will be starting one.

Why do I feel like I am playing the doctor here? Oh brother! I want off this ride! Sorry, feeling a little overwhelmed.

Cindy



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hi, Cindy! new
      #64544 - 04/25/04 08:15 AM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

LMAO....


Quote:

I want off this ride!



i hear ya, sistah!

unfortunately, it does appear that we're going to have to become private investigators to get our health straightened out! ridiculous, ain't it. i just want to know one thing: if i'm doing all this research, at what point does someone pay me the doctor's salary!?

as for the endometriosis... i think maybe your doctor is refusing to do the laproscopy becuase it's invasive? but really, that's sounding a little inexcusible to me. i don't know much about gynocological problems 'cause i'm lucky to not have issues with that (*knock on wood!*). i suggest you find a little time to play on the computer. i googled "diagnose endometriosis" and got tons of hits. the very first one said "A definitive diagnosis can be made only by means of laparoscopy." er.... that's kind of what i would have thought! print out some of this stuff and take it to your doctor. if he/she still refuses, i would go to a new doc. crud, you already have IBS, i think you deserve an actual "for sure" diagnosis on the endo!

do you have a GI doc? i would ask him/her about the Crohn's... if you don't, i would ask your primary care doc who should issue you a referral to a GI specialist, i would think. i don't know how often you would do a colonoscopy on something like this, but i would think if you're having symptoms that sound different from IBS but are still intestinal tract-y in nature, you'd be best served by having a colonoscopy. ( )

i haven't done a food diary, but they do sound like a great idea...

best of luck, Cindy, and keep posting so i know how you're doing! i'll send you good luck vibes!

*j



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Re: Crohn's new
      #64576 - 04/25/04 12:07 PM
KellyAndersson

Reged: 03/24/04
Posts: 272
Loc: N.California

jen wrote: ... a colonoscopy should give your doctor an idea whether you have Crohn's ...

Maybe. Or maybe not. I had a colonoscopy and endoscopy in December and turned up nothing at all. Two months later I was in the hospital for 3 weeks with 2 emergency surgeries for Crohn's. There's a whole lotta intestine there that you do not see with these two procedures. RE: blood presence, I don't know about that. My tests for that did come back positive (which is why they wanted to do the colonoscopy) but I'd bet you can have it and still not show blood in the stool -- especially if you're not having a flare-up.

I'd suggest you cross-post this to the Crohn's board or ask Jill to look over the whole thread.

And don't feel alone about "wanting off this ride." No fooling. Yes you do, like jen said, have to track down a thousand details on your own, and these disorders/diseases are incredibly hard to diagnose. But you'll make it!!

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Re: Crohn's new
      #64610 - 04/25/04 05:12 PM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

sorry you had that experience. like i said, the colonoscopy should give your doctor and idea, but certainly nothing is certain. it's a shame there are no definitive tests for any of these things.... very frustrating for all of the patients who go through these things....

the suggestion to check out the Crohn's board is a good one. glad you mentioned it.

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Re: hi, Jen! new
      #64690 - 04/26/04 06:18 AM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

Thanks Jen, terrific post back to me. Made me feel very supported and understood. All weekend I have been meaning to google endometriosis but other more FUN stuff got in the way. I will be doing that though. I go in stages where I ignore things and try to cope and take a break from playing Doc and then get my energy back and delve in again. Of course, the Doc's salary would keep me more motivated.

You know I don't have a GI doc, isn't that weird myself thinks. My doctor referred me to one about 6 years ago but after all the tests showed nothing and I was told it was JUST IBS...hmmmph...he just dropped me and I really think that IBS patients should be kept and looked at by a GI at least once a year. Or at least kept on their patient list so you don't have to get a referral first. Last time I looked it was a intestinal disorder!

Congrats on being a moderator, you are terrrrific!

I will be continuing to read the posts and will let you know if I get any closer to solving these mysteries.

Cindy

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Re: Thanks Kelly! new
      #64691 - 04/26/04 06:23 AM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine

After the eye inflammation thing my eye doctor did mention that people with Crohns get this often. I will be checking into the Crohns board and looking around a bit more. Thanks for the info about colonoscopies not always catching everything...a bit scary to hear that, but it makes sense, it is a long organ!!!

Thanks Kelly for all your responses, they have helped alot.

Cindy

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Re: hi, Jen! new
      #64704 - 04/26/04 07:23 AM
jenX

Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA

Quote:

I go in stages where I ignore things and try to cope and take a break from playing Doc and then get my energy back and delve in again.




yeah, me too. that's why i ignored my CFS for so long, 'cause i just needed a break from playing PI/doctor!

Quote:

I really think that IBS patients should be kept and looked at by a GI at least once a year. Or at least kept on their patient list so you don't have to get a referral first. Last time I looked it was a intestinal disorder!




see... now i know what your problem is! you think rationally and logically. you'll never get anywhere in the medical profession if you keep that up!

*j

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Re: Chuckle,Chuckle!!nt new
      #64832 - 04/26/04 12:53 PM
crc

Reged: 03/01/04
Posts: 161
Loc: Maine



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