Further testing needed?

[Klugett]

I know this is a common theme here, but with all the thoughtful and helpful responses I’ve read, I thought I’d throw out my situation and see what you all think.  

I recently had Celiac Screen blood work done due to fatigue, iron anemia, brain fog, anxiety and loose BMs. The TTG IgA portion of the screen came back with elevated levels (37.4 kIU/L with a reference range of 0.0-14.9), but the Endomysial Ab IgA test came negative. My doctor tells me that this means I do not have celiac disease but that I am sensitive to gluten. He recommends that I follow a gluten free diet and that no further testing be done. From all that I’ve read, the recommendation is to do an endoscopy/biopsy when this is the result, so it surprises me that my doctor doesn’t think there is a chance I could actually have celiac disease. I keep swaying back and forth between pushing for further testing or just cutting gluten and see if my symptoms resolve. There’s something about knowing the actual diagnosis, I guess. Any advice? Recommendations? Maybe just commiseration? 
Thanks for reading.  

[trents]

Welcome to the forum, Klugett!

I believe your doctor is incorrect in saying that you don't have celiac disease even though your tTG-IGA is elevated. And gluten sensitivity does not result in anemia because gluten sensitivity (I assume the doctor is referring to NCGS or Non Celiac Gluten Sensitivity) does not damage the small bowel villi. No inflammation of the small bowel villi would mean a negative tTG-IGA whereas yours is positive.

The endomysial IGA test is the most specific test for celiac disease but is not very sensitive so it can easily miss the presence of the disease. The tTG-IGA combines both good specificity with good sensitivity. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If you really want an official diagnosis for celiac disease then push for an endoscopy/biopsy. Otherwise, the antidote is the same as for NCGS - lifelong abstinence from gluten.

[Wheatwacked]

Go with his diagnosis and ask for a nutrition consult familiar with Celiac/NCGS.

Either way the treatment is GFD plus resolve vitamin deficiencies. You could push for a biopsy, but in my opinion, it won't change your treatment. It will expose you to a procedure requiring anesthesia and the low risk of a tear and more costs. Celiac Disease does sound cooler than boring old NCGS. It could be you caught Celiac Disease before any enough damage was done. Do you really want to eat more gluten and do more damage to prove the point? Does your insurance cover them the same way? Will your insurance classify you as pre-existing with Celiac but not NCGS? That could mean a premium spike.

[Scott Adams]

You have one very positive test for celiac disease (this test is not for NCGS), so it is likely that you have celiac disease and need to go gluten-free. The normal protocol would be to follow up this positive test with an endoscopy to check for villi damage associated with celiac disease.

[Klugett]

23 hours ago, trents said:

Welcome to the forum, Klugett!

I believe your doctor is incorrect in saying that you don't have celiac disease even though your tTG-IGA is elevated. And gluten sensitivity does not result in anemia because gluten sensitivity (I assume the doctor is referring to NCGS or Non Celiac Gluten Sensitivity) does not damage the small bowel villi. No inflammation of the small bowel villi would mean a negative tTG-IGA whereas yours is positive.

The endomysial IGA test is the most specific test for celiac disease but is not very sensitive so it can easily miss the presence of the disease. The tTG-IGA combines both good specificity with good sensitivity. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If you really want an official diagnosis for celiac disease then push for an endoscopy/biopsy. Otherwise, the antidote is the same as for NCGS - lifelong abstinence from gluten.

Thanks for the welcome and for your input. I have started and will continue to abstain from gluten. I just need to decide if the official diagnosis is really needed. 

[Klugett]

21 hours ago, Wheatwacked said:

Go with his diagnosis and ask for a nutrition consult familiar with Celiac/NCGS.

Either way the treatment is GFD plus resolve vitamin deficiencies. You could push for a biopsy, but in my opinion, it won't change your treatment. It will expose you to a procedure requiring anesthesia and the low risk of a tear and more costs. Celiac Disease does sound cooler than boring old NCGS. It could be you caught Celiac Disease before any enough damage was done. Do you really want to eat more gluten and do more damage to prove the point? Does your insurance cover them the same way? Will your insurance classify you as pre-existing with Celiac but not NCGS? That could mean a premium spike.

Thanks for the input. Thankfully and fortunately, the expense isn’t a concern, but no, I do not want to do more damage to simply prove a point. 

11 hours ago, Scott Adams said:

You have one very positive test for celiac disease (this test is not for NCGS), so it is likely that you have celiac disease and need to go gluten-free. The normal protocol would be to follow up this positive test with an endoscopy to check for villi damage associated with celiac disease.

Thanks for the response and the input. This is what I thought to be true, as well.