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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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    • trents
      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
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      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  I didn't notice any gluten ingredients in Kirkland Almond non-dairy beverage, however it does contain Locust Bean Gum. Some gums may cause IBS-type issues in some people with celiac disease or gluten sensitivity:    
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