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Can You Be Gluten Intolerant And Not Cd

GUSSLER9

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GUSSLER9 Newbie
GUSSLER9
Posted

HI, IM NEW HERE. MY DAUGHTER WAS DIAGNOSED WITH GLUTEN INTOLERANCE,DOES THAT MEAN SHE HAS CELIAC?

THANKS,STACY

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Rachel--24 Collaborator
Rachel--24
Posted
HI, IM NEW HERE. MY DAUGHTER WAS DIAGNOSED WITH GLUTEN INTOLERANCE,DOES THAT MEAN SHE HAS CELIAC?

THANKS,STACY

How was she diagnosed? It could be Celiac but it could also be intolerance. If you can tell us what tests were run it would be easier to answer the question. The treatment is the same regardless of whether she has full-blown celiac or intolerance. Gluten-free diet for life. If she carries a celiac gene she could have intolerance that hasnt yet become full-blown celiac. The difference there would be that not enough damage has occurred ...YET....to show up in a biopsy. Doctors pretty much rely on the biopsy for "officially" diagnosing celiac. But she could definately still have it.

KaitiUSA Enthusiast
KaitiUSA
Posted

She can be gluten intolerant without celiac. However, even if she is not celiac and has gluten intolerance she needs to be kept 100% gluten free ...that still does damage to the body but in different ways than celiac may do so.

She may very well have celiac though.

Did she have blood work done for celiac? Was it mentioned she has celiac? Who diagnosed it? What did they tell you to do?

celiac3270 Collaborator
celiac3270
Posted

Few believe me on this despite medical references, but actually gluten intolerance is not necessarily a lifelong 100% gluten-free diet. There are basically two definitions of gluten intolerance, one of which means 100% gluten-free, one of which does not:

1) Gluten intolerance can be a term used synonymously with celiac disease. If you look up some synonyms for celiac, you'll find things like gluten intolerance, gluten enteropathy, gluten-sensitive enteropathy, nontropical sprue, etc. These all mean celiac disease, but doctors will often use different names for it. So in that regard, saying you're gluten intolerant can mean you have celiac disease.

2) Gluten intolerance can also be used literally as meaning you have an intolerance to gluten. It is the same as saying, for example, that one is lactose intolerant. In people with gluten intolerance that is not celiac disease, you don't need to be 100% gluten-free. It is advisable that you limit gluten intake to what you can tolerate (as one would with lactose intolerance), but even if you don't do that, nothing is going to be damaged long-term. Of course, if you do this, you should really be sure it's not celiac. Make sure the lab is good, the right tests were run, the diagnosis of gluten intolerance was done with not only serologic testing, but also an endoscopy, etc. The big point I make, though, is that you're not going to be damaged if you have gluten intolerance and eat gluten.

Rachel--24 Collaborator
Rachel--24
Posted
The big point I make, though, is that you're not going to be damaged if you have gluten intolerance and eat gluten.

I *highly* disagree with that statement (you had to know I would say that :) )There is plenty of evidence that shows that gluten intolerance w/out Celiac causes damage. It just doesnt cause the SAME damage as seen in Celiac. It does not cause the same villi damage but it DOES cause damage to other areas of the body. It was never proven whether I have Celiac or not. I have DQ1 so chances are I'm intolerant w/out celiac disease but gluten definately caused me all kinds of problems. I'm still not recovered because there was damage done. My GI told me the diet for me is the same as if I'd had a positive biopsy for Celiac. Its life-long.

celiac3270...I'm just curious as I know you've read alot of books. Have you read Dangerous Grains? You might think differently after reading it.

celiac3270 Collaborator
celiac3270
Posted

LOL, yes, I thought you would say something like that :) . I have read Dangerous Grains. But if it causes damage, then it is, inherently and by definition, not gluten intolerance. If you have "gluten intolerance that causes different damage" and some other gene, it's probably actually just celiac that manifests itself in an atypical way. But gluten intolerance by definition means that it does not cause damage, but you may feel bad when consuming gluten. So it must be celiac or something like celiac.

Rachel--24 Collaborator
Rachel--24
Posted
LOL, yes, I thought you would say something like that :) . I have read Dangerous Grains. But if it causes damage, then it is, inherently and by definition, not gluten intolerance. If you have "gluten intolerance that causes different damage" and some other gene, it's probably actually just celiac that manifests itself in an atypical way. But gluten intolerance by definition means that it does not cause damage, but you may feel bad when consuming gluten. So it must be celiac or something like celiac.

Ok...I *get* what you're saying. I do think Celiac can manifest itself in other ways but right now a doctor cant verify celiac without villi damage. Since Celiac = villi damage anything else is considered gluten intolerance or non-celiac gluten sensitivity or whatever. There really is no "official" name for it...maybe someday after more research has been done the terminology will be more clear. I firmly believe that whatever its called...it causes damage. If I had had my biopsy when I was sick and not 6 months after going gluten-free I might have a better answer for myself but just from reading all the posts it seems like gluten does affect other areas of the body just as sverely as it would affect the villi in a celiac. Just my 2 cents. :)

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e&j0304 Enthusiast
e&j0304
Posted

I also have to disagree with what you said, celiac3270.

My daughter has a double copy of DQ-1 and was never proven to have celiac disease since she did not have a biopsy due to her blood tests being negative. We put her on a gluten-free diet about 6 weeks before we did tests through enterolab. Those tests showed a gluten intolerance along with genes that suggest gluten sensitivity. I know there is a small number of people with celiac who have DQ-1, but it's not a common.

My daughter had LOTS of very serious things going on with her including severe malnutrition that resulted in severe hair loss. Malnutrition can lead to many very serious health complications. In addition to that, she was displaying quite severe behavioral problems and her quality of life was definitely not as good as it could have been or as good as it is now.

She has to be 100% gluten free. If she even has a tiny amount of gluten she has a reaction that is very obvious.

I think I understand the point you're trying to make, but I just think that there is so much that needs to be learned about non-celiac gluten intolerance and I don't think anyone really knows how serious it may or may not be....

Just my 2 cents!

floridanative Community Regular
floridanative
Posted
If you look up some synonyms for celiac, you'll find things like gluten intolerance, gluten enteropathy, gluten-sensitive enteropathy, nontropical sprue, etc. These all mean celiac disease, but doctors will often use different names for it. So in that regard, saying you're gluten intolerant can mean you have celiac disease.

celiac3270 - what do you think gluten sensitive enteropathy means? My Celiac panel test results was flagged only for the tTg, saying this antibody level is 99% specific to GSE. When I asked the doctor (on the phone) what that meant all he could say was that he doesn't think I have celiac disease and that my results are inconclusive.

Noelle126 Apprentice
Noelle126
Posted

I've had this question because my cousin is gluten intolerant...and I thought that was celiac but I guess I'm wrong? (When I found out I was Celiac I called my aunt and uncle and they just said that no he has a gluten intolerance...) this is all still a little confusing...

skbird Contributor
skbird
Posted

I get what celiac3270's saying, but I think there needs to be another name. Celiac comes from Latin (I think Latin, maybe Greek?) for "stomach." While I have stomach symptoms, I believe just as much if not more of my damage is neurological and psychological. But, if you follow the logic that a person with DH is automatically diagnosed Celiac, then I guess it doesn't matter where the gluten intolerance manifests itself.

I don't personally consider myself Celiac, but for brevities sake, sometimes I do agree with that when I am describing it to someone else (IE someone says, "Oh, you're gluten intolerant, are you Celiac?") I also have some Celiac jewelry. I think it's fair I'm lumped in with the seriousness of Celiac, as I suffer as much as anyone with documented enteropathy.

:)

You say tomato... and I don't eat tomatoes... :P

Stephanie

Emme999 Enthusiast
Emme999
Posted

I think that my dad must be gluten intolerant. He hasn't tested positive for Celiac but his mother is (self-diagnosed) "allergic" to the gluten grains and he has all sorts of issues frequently associated with celiac disease. Plus, he's my dad & I have it! :angry: Damn it, I must have gotten it from somewhere!

Sheesh :rolleyes:

Anyway - I don't think it matters if it attacks your intestines or if it attacks your mind or your skin or whatever. I think that all the labels are pretty silly. If gluten is causing problems, it's causing problems (period!) (okay, exclamation point - whatever ;)).

I don't understand people who don't stay away from it if they haven't gotten the "gold standard" biopsy diagnosis. I knew, from the day I started the 'gluten challenge' that it was seriously affecting me - regardless of the biopsy results - and that I wasn't going to have anything to do with it after that.

(Okay, getting off the chair now.. ;) )

I just wish there was a test that would show people if it affected them in *any* possible way so that they could have a little insight into their body's workings. *sigh* ... Oh well, maybe someday!

- Michelle :wub:

GUSSLER9 Newbie
GUSSLER9
Posted
  • Author
She can be gluten intolerant without celiac. However, even if she is not celiac and has gluten intolerance she needs to be kept 100% gluten free ...that still does damage to the body but in different ways than celiac may do so.

She may very well have celiac though.

Did she have blood work done for celiac? Was it mentioned she has celiac? Who diagnosed it? What did they tell you to do?

KAITI, THE GI DID A BIOPSY AND SAID SHE IS ALLERGIC TO GLUTEN. WE JUST HAD BLOODWORK DONE AND NOW ARE WAITING. SHE'S NOT HANDLING THE NEW DIET WELL,IT'S ONLY BEEN A WEEK.NOT TO MENTION SHE'S ONLY 4.THANK YOU FOR THE HELP.STACY :)

tarnalberry Community Regular
tarnalberry
Posted
I've had this question because my cousin is gluten intolerant...and I thought that was celiac but I guess I'm wrong? (When I found out I was Celiac I called my aunt and uncle and they just said that no he has a gluten intolerance...) this is all still a little confusing...

*Technically* CELIAC disease means that you've had biopsy evidence that you have flattened villi and blood evidence that you have antigliandin antibodies. So, I refer to myself as gluten intolerant, because I never had a biopsy and can't tell you if I've got any intestinal damage, but I know that my body doesn't react well to gluten by dietary challenge.

In the end, the difference doesn't really matter, as the treatment is still the same.

DonnaD Apprentice
DonnaD
Posted
KAITI, THE GI DID A BIOPSY AND SAID SHE IS ALLERGIC TO GLUTEN. WE JUST HAD BLOODWORK DONE AND NOW ARE WAITING. SHE'S NOT HANDLING THE NEW DIET WELL,IT'S ONLY BEEN A WEEK.NOT TO MENTION SHE'S ONLY 4.THANK YOU FOR THE HELP.STACY :)

I'v just made rice crispy mars bar cakes, (supposedly gluten free) but my 11yo is still very 'off the wall' what do you other parents do? Her sister 16yo is starting to really resent the extra attention.

L has been really volitile and hard to live with. She is really tired and going to bed early (she has always needed lots of sleep) I feel that she is 'playing' it a bit but feel so **ap myself that I can understand her although the rest of the family are getting fed up with it all.

Tired mummy.

RiceGuy Collaborator
RiceGuy
Posted
I'v just made rice crispy mars bar cakes, (supposedly gluten free) but my 11yo is still very 'off the wall' what do you other parents do? Her sister 16yo is starting to really resent the extra attention.

L has been really volitile and hard to live with. She is really tired and going to bed early (she has always needed lots of sleep) I feel that she is 'playing' it a bit but feel so **ap myself that I can understand her although the rest of the family are getting fed up with it all.

Tired mummy.

It will take time to adjust to the new diet of course. Hidden gluten sources might be a problem too. There's also the "gluten withdrawal", which differs from person to person, and it depends on the amount of gluten which had been in the diet.

However, this thread topic isn't the right place to get the best answers to your questions. There is a specific forum just for dealing with children, located Open Original Shared Link, so I'd suggest looking/posting there instead.

KaitiUSA Enthusiast
KaitiUSA
Posted
KAITI, THE GI DID A BIOPSY AND SAID SHE IS ALLERGIC TO GLUTEN. WE JUST HAD BLOODWORK DONE AND NOW ARE WAITING. SHE'S NOT HANDLING THE NEW DIET WELL,IT'S ONLY BEEN A WEEK.NOT TO MENTION SHE'S ONLY 4.THANK YOU FOR THE HELP.STACY :)

If they did a biopsy and said that it sure sounds like celiac. I am curious to why they never said celiac though. Were they specifically looking for celiac when they did the biopsy. Obviously, by what you are saying it sounds like the biopsy came back showing damage which then means she should be on the diet 100%. A positive biopsy has been the "gold standard" for diagnosis(only if positive-you can still have celiac if the biopsy shows negative because she could have beginning stages with little or no damage yet or sporadic damage that they miss)

So if she had a positive one it is concrete that she has celiac.

Do you know what blood tests they ordered?

tarnalberry Community Regular
tarnalberry
Posted
I'v just made rice crispy mars bar cakes, (supposedly gluten free) but my 11yo is still very 'off the wall' what do you other parents do? Her sister 16yo is starting to really resent the extra attention.

L has been really volitile and hard to live with. She is really tired and going to bed early (she has always needed lots of sleep) I feel that she is 'playing' it a bit but feel so **ap myself that I can understand her although the rest of the family are getting fed up with it all.

Tired mummy.

Did you use Kellogg's Rice Crispies? If so, it's got gluten in it.

2Boys4Me Enthusiast
2Boys4Me
Posted
I'v just made rice crispy mars bar cakes, (supposedly gluten free) but my 11yo is still very 'off the wall' what do you other parents do? Her sister 16yo is starting to really resent the extra attention.

L has been really volitile and hard to live with. She is really tired and going to bed early (she has always needed lots of sleep) I feel that she is 'playing' it a bit but feel so **ap myself that I can understand her although the rest of the family are getting fed up with it all.

Tired mummy.

As Tiffany mentioned, Kellogg's Rice Krispies (and most others) are not gluten-free and I'm not even sure Mars bars are gluten-free.

Effem Foods Canada told me the only gluten-free products they have are M&Ms (except crispy). Maybe the U.S. Mars bars are gluten-free.

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