endoscopy shows mild damage + high tTG IgG

[donuthole]

Hi folks,

I managed to get an endoscopy (!) in these hard times after some setbacks due to the covid situation. I'm struggling to understand my results. Is there any way to tell if this is "early celiac" or "non-celiac gluten sensitivity"? (I'm ~30 and I got some sort of virus a year ago and was really sick with diarrhea and gastritis, I suspect that whatever I have has its origins there since I had zero problems before that; I'm now finally on a gluten-free diet and it has been working wonders for me.)

- endoscopy: mild non-specific inflammation in the small intestine (explanation says it could be NSAIDs, which I don't take, or early celiac), more precisely the summary reads: "duodenal mucosa with a patchy mild surface intraepithelial lymphocytosis, otherwise no significant histopathological abnormality"

- IgA: 383 (high) [lab's range: 87-352]

- tTG IgA: 3 [where 4-10 is a weak positive]

- tTG IgG: 10 [where 6-9 is a weak positive]

- EMA: negative

- probably relevant to mention: they also found thyroid antibodies (antiTPO, presumably Hashimoto's some day soon) and the diagnosis journey started when I was found to be iron deficient back in July

Thanks! I'm really happy to see that there is such a big community of people out there with similar issues.

 

[Scott Adams]

To me, a non-doctor lay expert, it looks like you've got celiac disease. Thyroid issues are quite common in celiacs, and iron deficiency anemia is very common. The blood tests and biopsy seem to support this.

[Scott Adams]

PS - Can I assume that your doctor will interpret these test results for you, and diagnose you? Please let us know.

[donuthole]

Yeah, I have a follow up in two weeks, I'll let you know what the "official" position is.

[Scott Adams]

The relief of symptoms on a gluten-free diet would be the ultimate confirmation, but technically you're supposed to wait until all tests are completed. I am not sure what further tests they would want to do at this point, but you may want to wait until they give you the green light to go gluten-free.

[Jan Meindfak]

Doesn't look like coeliac disease to me much - at least from those findings. Or could suggest early stage of the disease. There's a chance your doc will not give a diagnosis based on them. IgA is often below normal rather than above in celiac disease patients. But what's more important is that you see improvement on diet - in the meantime while waiting for your appointment you can do DGP test in both IgA and IgG classes, and a genetic test (which can only rule celiac disease out). 

Good luck! 

[Scott Adams]

I agree with Jan here, IF you are only looking at your test results, which are not definitive. However, when you include the original poster's statement of "I'm now finally on a gluten-free diet and it has been working wonders for me," along with the test results, it looks, at the very least, like gluten sensitivity. The treatment for celiac disease and gluten sensitivity are the same--a gluten-free diet for life.

[donuthole]

Thanks, yeah, I was just fishing for some more information with respect to the two options given my blood/endoscopy results.

The doc had recommended I go on a gluten-free diet till our next appointment. I did. On day 7 when I woke up the symptoms were suddenly just gone, for the first time (my biggest symptoms have been fatigue and tingling/heaviness/numbness/dull ache in arms/legs). Then a week later my partner did some gluten-free baking and I can only guess that even though we had cleared out all the obvious gluten items, some flour must have been present somewhere (either on the old baking utensils/trays/bowls or in some of the opened items, like the baking soda or the muffin cups box). The next day when I woke up I noticed the symptoms again and they've continued since. I'm hoping for some relief again on day 7.

[donuthole]

Update:

The diagnosis was indeed celiac disease. (I also specifically asked whether he had considered distinguishing between celiac disease and non-celiac gluten sensitivity.)

[Jan Meindfak]

I'm a lousy doctor apparently! 

Anyway, welcome to the club

[donuthole]

Honestly, I was a bit surprised because I thought the tTG IgG test was not very sensitive in the context of normal or high IgA's, so I expected to be diagnosed with NCGS. In any case, as Scott says it doesn't matter for practical purposes. I'll mention something else here for the records in case someone finds this useful some day: I had a celiac panel ordered by my endocrinologist 1.5 months before the GI doctor's. The endo's panel did not include the tTG IgG test, unfortunately, but it had all the rest. The interesting difference was that the tTG IgA was "<2" back then (the IgA's were 380, so high like now, same lab) -- so tTG IgA had gone up by 1 or more U/ml in that time frame. Maybe that's because I started making sure to eat gluten daily after the endo's results in order to prep for the endoscopy (ordered for the iron deficiency). I had been eating gluten products only semi-regularly before. I think I just naturally started choosing other things over bread and pasta because it made me tired (I just thought that was normal... 😞).

[Scott Adams]

It can seem like a curse at first, but knowing about this so you can properly deal with it is actually a blessing. This article might be helpful:

 

[donuthole]

22 hours ago, Scott Adams said:

It can seem like a curse at first, but knowing about this so you can properly deal with it is actually a blessing. This article might be helpful:

 

Thank you for the support and for this wonderful website/forum ❤️