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Celiac Disease Misdiagnosed as IBS

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I've only just received the news that I have Celiac Disease which for many years had been misdiagnosed as IBS. It was only after having the latest attacks I realized that something more must be wrong. The pain was excruciating after eating just one smal piece of pizza. It just got worse and worse with everything gluten-related. I found out after being tested that it was Celiac and not IBS.

I was just wondering how many other people have been diagnosed with IBS?

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IBS was one of the first things I got diagnosed with before they found out I had celiac disease. Once I discovered that IBS was really a description of symptoms and not a disease I continued searching for the real cause of my issues.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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“I Be Stumped.”  
 

I think too many doctors use an IBS diagnosis as a catch all.  They should look for the root cause, like Scott said.  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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dunno..  but I never had any of the classic symptoms.. never had diarrhea.. never really had any pain after eating gluten food...   but my Dr never misdiagnosed me..  He did an Endoscopy and biopsy found it.. it took like 3 months though.. 

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On 7/6/2020 at 4:31 PM, Scott Adams said:

IBS was one of the first things I got diagnosed with before they found out I had celiac disease. Once I discovered that IBS was really a description of symptoms and not a disease I continued searching for the real cause of my issues.

IBS was one of the first things I got diagnosed with

Ditto

23 years later.... I'm here

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same here - 'ibs' for 25 years :( 


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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I was the same , going to the docs for years , they treated me for ibs all the time even prescribed some bran drink that made it worse, they didnt really have much of an idea, it was an Indian doc that said it could be Celiac, my wife had made a connection that I, "seemed sensitive to bread ", but that's where it ended, but she was on the right tracks 

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the medical community can't continue to make $$ if you get a diagnosis of celiac, the gluten free diet is the cure.  no meds, no surgeries, etc.  my doctors never did test me until i was so malnourished they were ready to put me in the hospital on a feeding tube.   i had wonky blood tests and vitamin deficiencies for years, but they never did suggest celiac.  i never even heard of it, to be honest.  then, my pc told me to try the diet, which i did, and i immediately put on weight.  by the time i got to my g.i. appointment, the doc was afraid to have me do a gluten challenge because i was still underweight.   which gave me a negative blood test.  so, that's how that happens.  when she did the endoscopy, she could actually see the damage, therefore i got a dx.  good enough for me.  i follow up once a year with my gi doc.  

my story is not exclusive.  


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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6 hours ago, manaja1 said:

I was the same , going to the docs for years , they treated me for ibs all the time even prescribed some bran drink that made it worse, they didnt really have much of an idea, it was an Indian doc that said it could be Celiac, my wife had made a connection that I, "seemed sensitive to bread ", but that's where it ended, but she was on the right tracks 

Me too for over 40 years. I was diagnosed with IBS and kept Immodium in business taking it multiple times a day. My DH was diagnosed as a child as 'poison ivy in my bloodstream' to explain why I had it 12 months of the year and later as 'pickers acne' when it moved to my face, neck and scalp. My ataxia was 'you're just clumsy' as a child and in later years as MS when I lost the ability to walk unaided. When my spinal tap came back clear I was then told 'I wanted to be sick'. I was finally diagnosed by a very elderly allergist who typed his notes on an old Underwood with carbon paper for copies. When I showed up allergic to 98 of the 99 things he tested me for he sent me to a GI who almost killed me with a challenge but I got my diagnosis.

Fortunately doctors are much more Celiac savvy now and in many cases diagnosis takes place much sooner.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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