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Celiac Disease Misdiagnosed as IBS


Musicfem

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Musicfem Newbie

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

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

“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

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
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

same here - 'ibs' for 25 years :( 

Awol cast iron stomach Experienced
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

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

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

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
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

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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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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