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Celiac 4x Higher In Ibs Patients


happygirl

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happygirl Collaborator

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

Abstract of Study: Open Original Shared Link


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flourgirl Apprentice

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
Tim-n-VA Contributor

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

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

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

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?


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

Excellent point.

Lisa16 Collaborator

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
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

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

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
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
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
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.

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    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
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