The Straight "poop" - Non-celiac Bm Question

[Lynayah]

Okay, I don't know how else to ask this question without getting too "Augh, GROSS!", but I'll do my best . . .

I have recently been diagnosed as a highly gluten sensitive non-Celiac. All the results for a definitive diagnosis of Celiac were inconclusive until my last test - the gene test -- came back negative.

My question is: Can pre-diagnosis non-Celiac bowel movements be the same as Celiac bowel movements?

Mine (when they weren't full blown diarrhea) were either small and hard or large, kinda fluffy, light in color -- most all of the varieties floated. I thought this was only supposed to happen when your body is not absorbing nutrients properly and the fat passes through? Yet, if I do not have Celiac, my body shouldn't have been rejecting nutrients, yes? No? I'm so confused.

I have been gluten-free for a few weeks now, and finally my bowels have already become more normal -- darker and they do not float.

Yes, I know I need to ask the doctor, and I plan to on my next visit in November. In the meantime, any thoughts from friends here would be most appreciated.

Thanks for letting me give you the straight poop on this!

[jabberwife]

I too have had "poop" questions, so I'm curious as to what people think about this. Mine float almost all the time and are hard and round too...but I don't know for sure if that means anything.

I'm curious if they told you what genes you do have? I've seen evidence (individuals on this forum and in articles) that those that don't possess DQ2 or DQ8 can sometimes still get celiac. I don't have these genes, and am self-diagnosed gluten intolerant, but my dad has celiac, and my brother and sister are both gluten intolerant (self-diagnosed as well - they just never went to the doctor to find out about it). While I'm the only one that has had gene testing, in my experience, it seems unlikely that we'd have so many intolerant people in our family without some genetic involvement of celiac disease here. Just my experience, for what it's worth. That, and I had low B12 levels prior to going gluten-free, in spite of a healthy diet with vitamin supplementation. That signals malabsorption, celiac disease or not.

My thoughts are - they don't definitely know how to diagnose celiac in all cases. You just have to listen to your body, and regardless of whether you're a celiac or not, you sound like you're on the right track, with a gluten-free diet, and it does sound as though you're healing, so that's great.

[Lynayah]

I too have had "poop" questions, so I'm curious as to what people think about this. Mine float almost all the time and are hard and round too...but I don't know for sure if that means anything.

I'm curious if they told you what genes you do have? I've seen evidence (individuals on this forum and in articles) that those that don't possess DQ2 or DQ8 can sometimes still get celiac. I don't have these genes, and am self-diagnosed gluten intolerant, but my dad has celiac, and my brother and sister are both gluten intolerant (self-diagnosed as well - they just never went to the doctor to find out about it). While I'm the only one that has had gene testing, in my experience, it seems unlikely that we'd have so many intolerant people in our family without some genetic involvement of celiac disease here. Just my experience, for what it's worth. That, and I had low B12 levels prior to going gluten-free, in spite of a healthy diet with vitamin supplementation. That signals malabsorption, celiac disease or not.

My thoughts are - they don't definitely know how to diagnose celiac in all cases. You just have to listen to your body, and regardless of whether you're a celiac or not, you sound like you're on the right track, with a gluten-free diet, and it does sound as though you're healing, so that's great.

Great post, thank you. I believe you are absolutely correct, the medical community (even the more advanced part of the medical community) does not have all the answers. We here are in the forefront of what will eventually be a much greater understanding of Celiac.

It is so sad that without there being a drug so the drug companies can profit, there is no marketing and a horrible lack of info.

My gene test came back negative, but I not not yet have a copy of the lab results. I go to the doctor in November but will try to get copies faxed to me sooner.

Wow -- your case is particularly interesting, with all the family history you have.

This sure isn't easy.

[elle's mom]

This sure isn't easy.

Agreed.

Regarding the "floaters": it is my understanding (and someone please correct me if I'm wrong) that even though you tested negative for celiac, you can still be gluten intolerant, you can still have malabsorption, and this would account for the floaters. Likewise, since you've gone gluten-free you most likely are absorbing better and thus no floaters.

As far as the genes go.....I know there are people without DQ2 or 8 that definately have gluten issues. I don't think you have to have those two to be celiac, it's just that ninety some percent of diagnosed celiacs have one or both of those.......but there are many more undiagnosed, maybe they all have a different gene or cannot test positive on the currently available methods of testing? Or maybe those who are fortunate enough to be tested positive do so because of something on DQ2 or 8?? There is much more research to be done. Listen to your body.

[Lynayah]

Agreed.

Regarding the "floaters": it is my understanding (and someone please correct me if I'm wrong) that even though you tested negative for celiac, you can still be gluten intolerant, you can still have malabsorption, and this would account for the floaters. Likewise, since you've gone gluten-free you most likely are absorbing better and thus no floaters.

As far as the genes go.....I know there are people without DQ2 or 8 that definately have gluten issues. I don't think you have to have those two to be celiac, it's just that ninety some percent of diagnosed celiacs have one or both of those.......but there are many more undiagnosed, maybe they all have a different gene or cannot test positive on the currently available methods of testing? Or maybe those who are fortunate enough to be tested positive do so because of something on DQ2 or 8?? There is much more research to be done. Listen to your body.

That's a really good point -- I thought that only with true Celiac malabsorption was an issue. I hope someone here will know for sure. Thank you!

[AKcollegestudent]

Don't quote me, but at some point, I distinctly remember someone (ravenwoodlass, maybe?) saying that other countries recognize other genes that can cause celiac. You might have one of those genes.

[Lynayah]

Don't quote me, but at some point, I distinctly remember someone (ravenwoodlass, maybe?) saying that other countries recognize other genes that can cause celiac. You might have one of those genes.

Yes, thank you for posting this!

In other threads a few people have told me the same. I will definitely ask my doctor about it at my next appointment in November.