Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Disease Misdiagnosed as IBS


Musicfem

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 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 :)

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.