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 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748
    AnnaLousGFBakery
    Newest Member
    AnnaLousGFBakery
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.