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Divergent

No increase in intraepithelial lymphocytes

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Hi all,

I received a diagnosis of celiac not too long ago - I had positive (although not crazy high) blood work (both TTG IgA and DMG IgG), and endoscopy. Ate several months of gluten beforehand.

And yet... I recently received a copy of the pathology report from the biopsies, and it seems less cut and dry than I would like. While it does indicate that some of the biopsies showed signs of villous blunting (subtotal), and they say that there is moderate inflammation, they specifically point out that there was no increase in IELs! My gastro's interpretation of everything (bloods, symptoms, encodscopy visuals, this report) lead to my diagnosis, but I'm sitting here wondering if there is even such a thing as celiac without raised intraepithelial lymphocyte counts. There seems to be a lot of literature describing elevated IELs preceding or without blunting, but I'm not finding much talking about it the other way around.

Has anyone seen this situation before?

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2 hours ago, Divergent said:

Hi all,

I received a diagnosis of celiac not too long ago - I had positive (although not crazy high) blood work (both TTG IgA and DMG IgG), and endoscopy. Ate several months of gluten beforehand.

And yet... I recently received a copy of the pathology report from the biopsies, and it seems less cut and dry than I would like. While it does indicate that some of the biopsies showed signs of villous blunting (subtotal), and they say that there is moderate inflammation, they specifically point out that there was no increase in IELs! My gastro's interpretation of everything (bloods, symptoms, encodscopy visuals, this report) lead to my diagnosis, but I'm sitting here wondering if there is even such a thing as celiac without raised intraepithelial lymphocyte counts. There seems to be a lot of literature describing elevated IELs preceding or without blunting, but I'm not finding much talking about it the other way around.

Has anyone seen this situation before?

I can only guess  based on what I do know. 1)  allowable limit of IELs changed over the years.  Depending on your pathologist and what lab you used, you would have to find out what limit they consider a normal range. 2) having said number one, in the early stages of the disease process you may only have a slight increase in IEL. 3)  the way the biopsies are oriented on the slide when the pathologist reads it can have an effect on the count. 4) The disease can be patchy with its destruction. IELs are situated along different parts of the villi. I don't remember which it is for celiac, it may be the tip, it may be the base. 

With all of this, you may simply have patchy damage, poorly oriented samples on the slide, lab specifications for looking at and counting IEL, villi that are blunted in a small sample so that no cell increase is at the tip. 

 

 There may be some other fascinating reason for this however. It sort of makes me want to look at Google University.

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Thanks for this, ironictruth.

I personally believe that should my dx be accurate, it's not recent; my complaints are pretty consistent and go back years. But the logistics of analysis and reporting methods are always at play and you've raised some great points that are helping me think through this a bit more.

Regarding #4, I've been reading that IELs are typically found more towards the base of the villi and thin out towards the top, and that celiac can affect this distribution by making it look more uniform (because of more IELs present at the tip than usual).  What you say about blunting affecting that is interesting, but the Marsh classifications include both degree of atrophy/blunting and the IEL counts, no? So it must be possible to still gather info on IELs even when villi are blunted.

I will have another endoscopy at some point to assess a change following the gluten-free diet, I think what I'll do it try and get the same blood work done that was initially positive somewhere along the line as well. If that all comes down, then I think I'll feel a little more certain that I'm in the right place diagnosis-wise.

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My understanding about the antibody blood test is that the amount of a positive result is not indicative of anything...higher does not mean definately have celiac's and lower does not mean could possibly not have it.  My doc told me that anything a little above 0 is the same as a big response, it just depends on the person how much antibody they will produce.

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