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Celiac Disease Misdiagnosed as IBS

Musicfem
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Musicfem Newbie
Musicfem
Posted

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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Scott Adams Grand Master
Scott Adams
Posted

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.

cyclinglady Grand Master
cyclinglady
Posted

“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.  

  • 2 weeks later...
DJFL77I Experienced
DJFL77I
Posted

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.. 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
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

notme Experienced
notme
Posted

same here - 'ibs' for 25 years :( 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
16 hours ago, notme! said:

same here - 'ibs' for 25 years :( 

Wow. Clearly I am in the right forum.

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  • 3 weeks later...
manaja1 Rookie
manaja1
Posted

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 

DJFL77I Experienced
DJFL77I
Posted

how on earth can any Dr mis diagnose celiac...   checking for food allergies is like the most common thing to check for

you just take a blood test for celiac

notme Experienced
notme
Posted

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.  

ravenwoodglass Mentor
ravenwoodglass
Posted
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.

  • 2 months later...
paisleydaisy Apprentice
paisleydaisy
Posted

Yep. Me for years. Ran limited blood tests because Celiac runs in my family but totally missed it for numerous reasons and just kept telling me it was IBS caused by anxiety and to take Valium and peppermint oil 'as needed'. 
I agree with all the above. Doctors are much more onto it these days and the diagnostics are also simplifying :) . 

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