Some Research To Consider When In The Diagnosing Prosess

[Mum in Norway]

I came across Open Original Shared Link, and I find it very interesting. It states that not all celiacs will develope villous atrophy, and is therefor never diagnosed with celiac disease.

It makes me think that maybe I am one of those people? It olso (to me personally) raises the question if this meens that what is now called non-celiac gluten intolrance will one day be prooven to be a form of celiac after all?

 

This is just the abstract, but I am getting a hold of the whole report and will read it all when I get the time.

 

 

[GF Lover]

We just discussed this in the thread below.  Read through to the end.

 

https://www.celiac.com/forums/topic/104636-just-cant-help-myself/page-1

 

Colleen

[dilettantesteph]

Some with a positive DH biopsy and therefore considered positive for celiac disease get negative intestinal biopsies.  In my opinion, that shows that some celiacs will not have enough intestinal damage for a positive biopsy and may show damage elsewhere.

[nvsmom]

Good thread colleen. I missed that one.

 

I would guess that NCGS is linked to celiac. Two of my kids had negative tTG IgA tests but they clearly have issues with gluten and their mom (me) is a celiac. It would be quite a bizarre coincidence if they had NCGS and there is no link to celiac disease at all.  It is possible that they have celiac disease but their tests missed it but they were 9 and 5 when tested so it should have been pretty accurate... and I'm not keeping them on gluten just so I can test them again in the future.

 

My guess (its only a guess) is that gluten sensitivity is a spectrum. People get different symptoms, right? I think that the autoimmune attack on the villi is just one symptom, just like nutritional deficiencies is one symptom (can be caused by inflammation), or migraines, ataxia, DH, or GI issues are symptoms.... But that's just a guess. I'm, waiting to see what they'll find next as doctors are always proving themselves wrong... Remember how back in the day a kid couldn't be celiac if they did not experience failure to thrive? Theories change.

[GF Lover]

Nicole,

 

Just like the area of histamine intolerances is evolving.  In five years it will be interesting to see all the developments in these areas.

 

Colleen 

[nvsmom]

I completely agree! I just wish doctors would quit with their sweeping statements of "fact" in the meantime. If only doctors would say, "what we think we know right now is..." instead of saying something doesn't exist just because they haven't personally read about it yet.    The stuff I've had doctors tell me as a fact is quite dsturbing; if I hadn't educated myself, I would never be getting well.  

[dilettantesteph]

I sure agree with that sweeping statement comment.  It's even worse when the doctor seems about 10 years behind in his reading!!

[answerseeker]

Some with a positive DH biopsy and therefore considered positive for celiac disease get negative intestinal biopsies. In my opinion, that shows that some celiacs will not have enough intestinal damage for a positive biopsy and may show damage elsewhere.

Interesting thought, I may be one of these celiacs. I was diagnosed by DH but had negative intestinal biopsy, however my GI dr believes it was due to the large amount of prednisone I was on only weeks before testing.

But, I still have malabsorption issues so can you still have malabsorption without villi damage? And the lactose intolerance, that's believed to be due to damaged villi not able to break down the lactose? Based on these factors my Dr does think there is damaged that was missed. Thoughts?

[GF Lover]

Interesting thought, I may be one of these celiacs. I was diagnosed by DH but had negative intestinal biopsy, however my GI dr believes it was due to the large amount of prednisone I was on only weeks before testing.

But, I still have malabsorption issues so can you still have malabsorption without villi damage? And the lactose intolerance, that's believed to be due to damaged villi not able to break down the lactose? Based on these factors my Dr does think there is damaged that was missed. Thoughts?

There are many different causes of malabsorption, so yes to your question. 

 

Open Original Shared Link

 

Lactose Intolerance is due to the lack of the enzyme lactase.  Other causes can be Viruses, Parasites, Bacteria and Celiac Spru.

 

Open Original Shared Link

 

Hope this helps.

 

Colleen

[answerseeker]

There are many different causes of malabsorption, so yes to your question. 

 

Open Original Shared Link

 

Lactose Intolerance is due to the lack of the enzyme lactase.  Other causes can be Viruses, Parasites, Bacteria and Celiac Spru.

 

Open Original Shared Link

 

Hope this helps.

 

Colleen

yes but mine is from my celiac, so in the absense of the other causes and there is a diagnosis of celiac from DH but no detectable villi damage, what causes the malabsorption? that's my question. inflammation?

[GF Lover]

yes but mine is from my celiac, so in the absense of the other causes and there is a diagnosis of celiac from DH but no detectable villi damage, what causes the malabsorption? that's my question. inflammation?

 

_co

 

You would have to rule out Every Single Other Cause...and then take a guess.  I really don't know how to answer your question.  Maybe browse the DH Section and see if others with DH have malabsorption issues not due to villi damage.

 

Good luck.

 

Colleen

[answerseeker]

_co

You would have to rule out Every Single Other Cause...and then take a guess. I really don't know how to answer your question. Maybe browse the DH Section and see if others with DH have malabsorption issues not due to villi damage.

Good luck.

Colleen

Oh I wasn't really asking for me, I've already been diagnosed and am getting better. More of just general curiosity :-) its been interesting to read through these threads. Makes some light bulbs go on lol

[bartfull]

This makes ME think, or should I say SPECULATE, that there really is no such thing as NCGI. I speculate that if you have been diagnosed with NCGI, you really DO have celiac. No scientific evidence to back that up, just a feeling I have had all along and this article makes me believe it.

[nvsmom]

I know inflammation is LINKED to nutrient deficiencies (and possibly malabsorption) but I'm not sure how. People with other autoimmune issues or chronic diseases tend to have inflammation and that can lead to malabsorption which then leads to inflammation... I'm not sure where it all starts! Maybe this will be my weekend reading.  

 

All I know is that it isn't just the villi damage that causes nutritional deficiencies. Not just celiacs have those problems; many with NCGI do too.