Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 4x Higher In Ibs Patients

happygirl

Recommended Posts

happygirl Collaborator
happygirl
Posted

For article on Celiac.com: https://www.celiac.com/articles/21807/1/Cel...rers/Page1.html

Abstract of Study: Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


flourgirl Apprentice
flourgirl
Posted

Thanks for the posting, Happy Girl! My mom, I'm convinced, is Celiac, but she won't be tested. Lately she is having some serious "bouts" but says it's just IBS. This backs up my thinking, but, like so many others, I can provide information but can't force family to test. I'm always grateful for more info. :)

happygirl Collaborator
happygirl
Posted
  • Author

This is related, as well: https://www.celiac.com/gluten-free/index.ph...c=53907&hl=

Tim-n-VA Contributor
Tim-n-VA
Posted

No. It's just IBS.

I have celiac. My oldest brother has IBS and thyroid issues. Our mother had diabetes. His daughter has an auto-immune condition that resulted in a false diagnosis of Lupus. All diseases of the immune system. He has a pill that he can take. If he doesn't take it and eats a "normal" meal he has all the classic celiac symptoms. He has to give himself B12 injections because he doesn't absorb the pill form.

But it's just IBS.

Lisa16 Collaborator
Lisa16
Posted

I was mis-diagnosed with IBS for 23+ years. Do not be quick to exclude celiac as a possibility.

I hate the diagnosis of IBS because you are repeatedly told "there is nothing you can do about it." Furthermore, once you get stuck with that diagnosis, doctors are not so willing to do the celiac tests.

Maybe that will change now.

The only surprise to me is that the rate is ONLY 4x.

nutralady2001 Newbie
nutralady2001
Posted

Mis diagnosed with IBS for close to 50 years............ first it was called "mucous colitis" but then IBS became "fashionable" so got that label............ all w/o testing of course :rolleyes::angry:

happygirl Collaborator
happygirl
Posted
  • Author

I read this recently, "Some call celiac disease the mockingbird syndrome because it mimics the symptoms of other health conditions like irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome or stress" SOURCE: Medical News Today

Interesting that Celiac is the "mockingbird sydrome" when there are objective tests to diagnose the condition (fully aware that the testing is not perfect, and doesn't catch non-celiac gluten intolerance) - but Celiac is fully defined and testable....instead of the more general, subjective, often 'diagnoses of exclusion' in IBS, fibro, cfs, or stress (when we know that generally, these syndromes are labeled without 'ruling out' other things. I would say, as a whole the Celiac tests (for Celiac, not ncgi) are better than the "tests", as a whole, for IBS, fibro, cfs, or stress.

Shouldn't it be the other way around? Shouldn't the other diseases be mockingbird syndromes of Celiac?

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
Shouldn't it be the other way around? Shouldn't the other diseases be mockingbird syndromes of Celiac?

Excellent point.

Lisa16 Collaborator
Lisa16
Posted

Oh yes! If only doctors would look at it that way instead! How many more people could be saved?

In the immortal words of Momma Goose, "thump.... thump.... thump!" Of course, she was talking about french fries at the time. But this is an even bigger head-banger.

And to make matters even worse, with IBS they tell you, "Oh, don't worry about it. Studies show there are no long term detrimental effects to your overall health."

Cancer anyone?

ravenwoodglass Mentor
ravenwoodglass
Posted
Oh yes! If only doctors would look at it that way instead! How many more people could be saved?

In the immortal words of Momma Goose, "thump.... thump.... thump!" Of course, she was talking about french fries at the time. But this is an even bigger head-banger.

And to make matters even worse, with IBS they tell you, "Oh, don't worry about it. Studies show there are no long term detrimental effects to your overall health."

Cancer anyone?

I was misdiagnosed with IBS for many many painful years. That diagnosis cost me a great deal. My signature really says it all. Folks should also bear in mind that IBS is not IMHO a 'diagnosis' of anything. It is simply a catch all term which means doctors don't want to find out what the real cause is.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I am another one who was "diagnosed" with IBS when I was 14. I am 34 now. It took my young son being diagnosed with Celiac for my doctor to take my complaints seriously. Twenty years of suffering....

lonewolf Collaborator
lonewolf
Posted

I was diagnosed with IBS in college. (At first they called it "colitis", then decided it was IBS.) All my symptoms went away on the gluten-free diet. But I don't have Celiac, because I don't have the right genes. I wonder how many other people are like me - severely gluten intolerant, but not Celiac, and misdiagnosed with IBS.

ravenwoodglass Mentor
ravenwoodglass
Posted
I was diagnosed with IBS in college. (At first they called it "colitis", then decided it was IBS.) All my symptoms went away on the gluten-free diet. But I don't have Celiac, because I don't have the right genes. I wonder how many other people are like me - severely gluten intolerant, but not Celiac, and misdiagnosed with IBS.

What genes were you told you have? There are 7 more genes other than DQ2 and DQ8 that are associated with celiac they just are not recognized yet in the US. Gene testing is in it's infancy, so to speak, and should not be used to say you for sure have celiac or not. If it walks like a duck and it quacks like a duck it is not a horse.

lonewolf Collaborator
lonewolf
Posted
What genes were you told you have? There are 7 more genes other than DQ2 and DQ8 that are associated with celiac they just are not recognized yet in the US. Gene testing is in it's infancy, so to speak, and should not be used to say you for sure have celiac or not. If it walks like a duck and it quacks like a duck it is not a horse.

All I got back was a note saying that I was negative for DQ2 and DQ8 and therefore did NOT have Celiac. My son has double DQ3 subtype 7, so I know I have at least one copy of that.

All 4 of my children were tested (two had symptoms) and all came back negative on the whole Celiac panel. The 2 with symptoms went gluten-free anyway and have had great results. When a 14 year old decides she feels better eating gluten-free "no matter how much anyone teases me", you KNOW that there's something to it.

I don't really care that much if I actually have Celiac or not - there's no way I will EVER eat gluten again after the amazing turn around in my health.

ravenwoodglass Mentor
ravenwoodglass
Posted
All I got back was a note saying that I was negative for DQ2 and DQ8 and therefore did NOT have Celiac. My son has double DQ3 subtype 7, so I know I have at least one copy of that.

All 4 of my children were tested (two had symptoms) and all came back negative on the whole Celiac panel. The 2 with symptoms went gluten-free anyway and have had great results. When a 14 year old decides she feels better eating gluten-free "no matter how much anyone teases me", you KNOW that there's something to it.

I don't really care that much if I actually have Celiac or not - there's no way I will EVER eat gluten again after the amazing turn around in my health.

I do so wish US medicine would look outside their own narrow little world. There are other genes that are associated with it and clearly recognized in other countries. Perhaps someday the US will catch up on the research. I am glad your family is doing so much better.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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
      - trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well: Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative...
    2. Scott Adams
      - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t sh...
    3. KDeL
      - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac...
    4. Peggy M
      - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

      Kroeger has quite a few Gluten free items. Right now they are redoing my Kroeger store and are adding everything into the regular sections. Since this was done some new ones have been added. Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    5. Scott Adams
      - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,278
    • Most Online (within 30 mins)
      7,748
    Pinkwells19
    Newest Member
    Pinkwells19
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      diagnostic testing variance

      By trents · Posted

      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Does Kroger Offer Affordable Gluten-Free Options?

      By Peggy M · Posted

      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Scott Adams · Posted

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
×
×
  • Create New...