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How Many of Us Were Misdiagnosed With IBS?
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Were you ever misdiagnosed with IBS?
Yes
55%
 55%  [ 34 ]
No, but it took years to get a diagnosis of MC, and at least one of my doctors suspected IBS
13%
 13%  [ 8 ]
No, I was never misdiagnosed with IBS, and my MC was promptly diagnosed
31%
 31%  [ 19 ]
Total Votes : 61

Author Message
draperygoddess
Rockhopper Penguin
Rockhopper Penguin


Joined: 29 Aug 2011

Posts: 558
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, lactose, casein, eggs, MSG, potatoes/potato starch, soy,peanuts, bananas, tomatoes, coconut,grapes, citrus, tree nuts, apples--cautiously adding back all but Big 4
Location: Tennessee

PostPosted: Sun Oct 16, 2011 2:57 pm    Post subject: How Many of Us Were Misdiagnosed With IBS? Reply with quote

Quote:
Wondering how many "IBS" labelled patients are out there, having actually LC or CC


Harma, I have wondered about this myself. How many of us on the forum were originally diagnosed with IBS?
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Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4754
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Sun Oct 16, 2011 7:06 pm    Post subject: Reply with quote

I just talked to the wife of someone who has all the symptoms of MC. His doctor's diagnosis? IBS and anxiety. It makes me want to scream. I'm sending him this website URL and will put him in touch with JoAnn.

Gloria
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You never know what you can do until you have to do it.
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draperygoddess
Rockhopper Penguin
Rockhopper Penguin


Joined: 29 Aug 2011

Posts: 558
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, lactose, casein, eggs, MSG, potatoes/potato starch, soy,peanuts, bananas, tomatoes, coconut,grapes, citrus, tree nuts, apples--cautiously adding back all but Big 4
Location: Tennessee

PostPosted: Sun Oct 16, 2011 9:29 pm    Post subject: Reply with quote

Gloria,

I have all the clinical symptoms of MC as well, but have been told for 5 years that I "probably had IBS." The only reason my doctor did a colonoscopy was due to my family history of colon cancer. Rolling Eyes
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Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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harma
Rockhopper Penguin
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Joined: 04 Oct 2009

Posts: 984
User's local time:
2017 Sep 26 - 1:00 PM


Food Intolerances : lactose, caseine, soy, gluten, yeast, probalby egg (enterolab testing) also problems digesting corn, mushrooms, pepers.
Location: amman

PostPosted: Mon Oct 17, 2011 1:37 am    Post subject: Reply with quote

Really there are so many people with any bowel disease, UC, Crohn, Celiac, MC who first get the diagnosis IBS. Especially Celiac is famous for that, the normal diagnosis times seems to be 10 years. How easy could 10 years of misery be spared by a simple blood test.

I wish I knew earlier about the gluten and bowel problems (besides celiac) I could have spared me so much misery in the last 10 years.

But of course better now than never.
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"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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harma
Rockhopper Penguin
Rockhopper Penguin


Joined: 04 Oct 2009

Posts: 984
User's local time:
2017 Sep 26 - 1:00 PM


Food Intolerances : lactose, caseine, soy, gluten, yeast, probalby egg (enterolab testing) also problems digesting corn, mushrooms, pepers.
Location: amman

PostPosted: Mon Oct 17, 2011 1:43 am    Post subject: Reply with quote

oh by the way, my GI does not give on IBS, I have now CC + IBS, even when there is a diagnosis for the bowel problems...if not all the symptoms fit in with the classical picture of MC (that is in my GI opinion only watery D), than the rest is, what else, IBS. First I thought IBS was created for patients to reassure patients that they really "have something". But I am sure it is also easy for doctors, call it IBS an sent them home.
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"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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beni
Adélie Penguin
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unknown IP

Joined: 23 Sep 2011

Posts: 111
User's local time:
2017 Sep 26 - 5:00 AM




PostPosted: Mon Oct 17, 2011 5:33 am    Post subject: Reply with quote

hi, here is one to beat all! i was diagnosed with IBS 13 years ago, within a month I had to have an urgent total hysterecomy, strangely the IBS so called went after my op only to get another diagnosis 8 years later of IBS followed by a colonoscopy showing MC !!!!!!Beni
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karenswans
Adélie Penguin
Adélie Penguin


Joined: 03 Sep 2011

Posts: 86
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, dairy, soy, egg

PostPosted: Mon Oct 17, 2011 6:09 am    Post subject: Reply with quote

My GI said it could be IBS or MC, and we had to do a colonoscopy to differentiate because "the treatments are very different." It did take me years to get a diagnosis anyway because it took me that long to actually address it with my doctor because I assumed I had IBS!
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Dee
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Joined: 26 May 2005

Posts: 1940
User's local time:
2017 Sep 26 - 5:00 AM



Location: OHIO

PostPosted: Mon Oct 17, 2011 1:50 pm    Post subject: Reply with quote

Initially I was told IBS and was prescribed Bentyl & Questran.
After no signs of improvement was finally diagnosed by colonoscopy biopsies, showing collagenous colitis.
Then I was put on Asacol. Didn't help.
Then Entocort EC, which did work.
GI does not recognize anything to do with MC & food intolerances.
Just shakes his head when I bring it up and says, "you are not a celiac"!
You don't even want to know what I'd like to express to him!

Dee~~~
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"What the heart gives away is never gone ... It is kept in the hearts of others."
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MotherGrizzly

United States

Joined: 17 Sep 2011

Posts: 13
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : dairy, soy, eggs, gluten

PostPosted: Fri Oct 28, 2011 8:24 pm    Post subject: Reply with quote

I have spent most of my life with the misdiagnosis! Now, I have a GI who correctly diagnosed me with the lymphocytic colitis, but he tells me that diet "doesn't improve" the LC and that it's a TYPE OF IBS. If it weren't for this board, I would be so confused. WHY do these doctors, who get paid so much, know so little?
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Just diagnosed LC--thought I was IBS-D for the last 30 years! : /
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draperygoddess
Rockhopper Penguin
Rockhopper Penguin


Joined: 29 Aug 2011

Posts: 558
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, lactose, casein, eggs, MSG, potatoes/potato starch, soy,peanuts, bananas, tomatoes, coconut,grapes, citrus, tree nuts, apples--cautiously adding back all but Big 4
Location: Tennessee

PostPosted: Mon Oct 31, 2011 6:30 am    Post subject: Reply with quote

I am not a swearing person, but two abbreviations are fast becoming bad words in my vocabulary: GI and IBS-D!
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Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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harma
Rockhopper Penguin
Rockhopper Penguin


Joined: 04 Oct 2009

Posts: 984
User's local time:
2017 Sep 26 - 1:00 PM


Food Intolerances : lactose, caseine, soy, gluten, yeast, probalby egg (enterolab testing) also problems digesting corn, mushrooms, pepers.
Location: amman

PostPosted: Mon Oct 31, 2011 8:28 am    Post subject: Reply with quote

Quote:
but he tells me that diet "doesn't improve" the LC and that it's a TYPE OF IBS


MC, CC or LC a type of IBS....sigh...some even with inflammation markers that is linked to a disease with a name call it IBS. This one is really the worst one I have heard ever on MC.
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"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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Lesley
King Penguin
King Penguin


Joined: 03 Sep 2011

Posts: 2914
User's local time:
2017 Sep 26 - 3:00 AM


Food Intolerances : Too many to list

PostPosted: Mon Oct 31, 2011 1:22 pm    Post subject: Reply with quote

My doc beat all. He did the biopsy and dx'd MC. When I told him how uncomfortable I was he said it must be IBS. I asked him how it could be both when he had actually dx'd it through a biopsy. NO REPLY! His silence was deafening.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30499
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Nov 11, 2011 10:27 am    Post subject: Reply with quote

It appears that almost half of us were misdiagnosed with IBS. Shocked That's mighty significant. It says a lot about the prevailing medical mindset regarding diagnosing digestive system issues. Rolling Eyes

Tex
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cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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hoosier1
Rockhopper Penguin
Rockhopper Penguin


Joined: 06 Sep 2010

Posts: 764
User's local time:
2017 Sep 26 - 6:00 AM


Food Intolerances : Gluten
Location: Indiana

PostPosted: Fri Nov 11, 2011 10:33 am    Post subject: Reply with quote

I was misdiagnosed with, LOL, IBS for 7 years!!!!!!!!
_________________
"It's not what I believe. It's what I can prove." - A Few Good Men
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draperygoddess
Rockhopper Penguin
Rockhopper Penguin


Joined: 29 Aug 2011

Posts: 558
User's local time:
2017 Sep 26 - 5:00 AM


Food Intolerances : gluten, lactose, casein, eggs, MSG, potatoes/potato starch, soy,peanuts, bananas, tomatoes, coconut,grapes, citrus, tree nuts, apples--cautiously adding back all but Big 4
Location: Tennessee

PostPosted: Fri Nov 11, 2011 7:31 pm    Post subject: Reply with quote

My doc is STILL trying to tell me it's IBS, despite pathological evidence to the contrary. When I questioned him about it, he said, "So you think you know more than a doctor and two pathologists?" anger
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Cynthia

"Can we fix it? YES WE CAN!" -Bob the Builder
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