NCGS Stool Question

[Feeneyja]

Sorry for the TMI in advance. And I have posted my story in another thread, but here's a recap:

My biopsy Was negative after my 1 month gluten challenge (almost 3 years gluten-free) and I'm trying to get my  GP to run the celiac panel which the GI wouldn't do because the biopsy is the gold standard. So technically I have NCGS. So does my daughter, by the way and many of her symptoms are neurological. 

 

Anyway, I am now 1 week back gluten-free with most of the acute symptoms gone (dizziness, brain fog, nausea, headaches, swollen gums) but my digestion is still not right.  By the end of the day my stomach is gurgling and rolling, I'm still constipated, still lots of mucus, still oil floating in toilet after BM.   Does anyone with NCGS see this?  Especially the mucus and oil. I'm guessing my gut still needs to heal, but that doesn't seem to fit with NCGS.  I do know that recent findings at Columbia U show intestinal damage with NCGS, but my doctor stated the removal of gluten with NCGS is purely for symptom management and not because of damage.  

 

I'm just trying to make sense of it all.  Do folks with celiac and NCGS both have oily stools?  I only see it listed with celiac.  I'm guessing that the recent NCGS findings haven't really filtered down to the doctor I'm seeing.  But even the Columbia U paper seems to imply the damage is not a malabsorption issue but only leaky gut (thus the extra intestinal symptoms).  So why the funny BMs

 

Thanks!

 

[Feeneyja]

Also want to add:  I have a history of anemia. I was not anemic prior to my challenge.  No feratin levels checked. But I noticed after about 2 weeks of my challenge that when you pulled my eyelids down it was pale and my hands and feet would be cold a blue, both symptoms I used to get when anemic as a young adult.  Can you become anemic that quickly?  And why?  NCGS?  I'm thinking I should have my iron and vitamin levels checked anyway even though I was not celiac positive. 

[Ennis-TX]

NO proof here but random thoughts, the mucus can either be undigested fats not breaking down, or a mucus produced by the intestines to protect itself from a irritant. Either way would not such a film around your food going through your intestines between it and the walls prevent the said walls from absorbing the needed nutrients at 100% efficiency and in that regard some would be significantly hampered due to the way the body absorbs and processes them more then others?

 

[Jmg]

1 hour ago, Feeneyja said:

 Do folks with celiac and NCGS both have oily stools?  I only see it listed with celiac.  I'm guessing that the recent NCGS findings haven't really filtered down to the doctor I'm seeing.  But even the Columbia U paper seems to imply the damage is not a malabsorption issue but only leaky gut (thus the extra intestinal symptoms).  So why the funny BMs

Yes I had this prior to going gluten-free. I can't honestly remember now if it recurred during the challenge, I think so but without finding my diary I can't say for certain. I do know it took me longer to recover from the challenge than it did the first time I went gluten-free.

The best source I've found on NCGS has been the Italian researchers, I think they're at the forefront of this. Check out the second link on this post from Umberto Volta: 

You will find that he says malabsorbtion is a factor in NCGS, but it appears to be mediated via inflammation in the bowel rather than villous atrophy. I definitely had malabsorbtion symptoms, which made me think I was celiac but misdiagnosed, which may be an option for you as well, but NCGS would apparently explain this also for us both. 

1 hour ago, Feeneyja said:

my hands and feet would be cold a blue

I had this, used to wear socks in bed and 2 pairs of socks during the day  I thought it may be related to thyroid however rather than anemia?

1 hour ago, Feeneyja said:

I'm trying to get my  GP to run the celiac panel which the GI wouldn't do because the biopsy is the gold standard.

Can you get a second opinion?

Hope this of help and that you soon recover.

[Feeneyja]

Jmg, thank you for the resources. Terrific list.  And thanks for the symptom info. I really feel much better overall , but the digestion (which was just perfect before the challenge!) is bothersome.   

My history of anemia and stress fractures has me concerned. I'm looking for another doctor that will be willing to monitor my health in light of my gluten intolerance and not just dismiss it because it's not celiac...or is it?

[Feeneyja]

Jmg, another question I have had is whether or not NCSG is a possible precursor to celiac.

 I think the Columbia U paper only established that there was intestinal permeability and innate immune system activation in folks with NCGS.  That doesn't really rule out future celiac. And doesn't Volta speak of adaptive immune system response in NCGS because of elevated anti gliadin antibodies.  And the study that shows equal increased risk of autoimmune disease in both celiac and NCGS (with the NCSG patients being celiac HLA positive) makes me think that if left unchecked, NCGS could develop into celiac.  And this evolution changes the immune system response with the hyperactive gut immune response not allowing the NCGS response but instead damaging the villi. 

Oh, and this just occurred to me...what if that is it?  The body responds to this intestinal inflammation and permeability but in the process turns on the body itself, thus the damage and celiac. 

Anyway, just ? 

[Ennis-TX]

There was a article I read a while back about how during times of when your body is fighting disease, infections, inflammation, sickness, or under extreme stress and you have the celiac gene, that it can become active. The theory ran along the lines of your bodies heightened immune response and if your consuming gluten during it the body was prone to create T cells to also fight the gluten and it would become a permanent issue and then result in the body also attacking the villi and other parts of the body pretty much becoming celiac disease/activating the dormant gene for it.  DO not quote me on any of this, this is from my basic understanding of a article I skimmed over months ago.

[Feeneyja]

Right, I've read something of the sort too. I was just thinking of Fasano's triad for autoimmunity and this sort or fits. 

Just speculation.