Can you please help me understand this test result?

[Karen65]

Greetings, what a valuable resource and experts here! I had zero symptoms but after a first- degree relative (with myriad and classic celiac symptoms) tested positive in all the usual blood work I learned from them about the subset panel of tests that include deanimated gliadin pepptide AB IGA. My doctor was willing to order the panel along with an endoscopy I had done at the same time as my colonoscopy. All the tests came back well within normal limits with the exception of the IGA, flagged elevated at 34, pre- Covid in 2019. Already a vegan and on a fairly restricted diet it wasn't that big an issue to become gluten-free (except for learning to re-bake for family) and see if the level dropped. 3 months later it had, to 30. Kept on the very strict diet religiously, tested 32 6 months later and the same nearly a year later. Last summer it had dropped again to 27, still well above 15 for the cutoff but I was encouraged it was coming down- to be clear, I had NO symptoms prior and feel no symptoms now! But inflammation of any kind concerns me, at nearly 70. My question: my recent test was reported as "1.6" for the IGA and "less than 1.0" for the IGG (which was previously 6,4,4,3,6).  I have talked to my doctor, the lab, the lab manager and the manager of the lab manager and none see the problem. They tell me it's great news and that it's just now dropped to very low. My argument is that it's too huge a change and besides, this looks to be a different range, although still marked as U/mL. The doctor finally agreed to a retest in the event it was entered incorrectly, but assuming I get a similar result have any of you any insight? Thank you in advance!

   

   

  

[trents]

Welcome to the forum, Karen65!

The test names and numbers you provide are a little confusing. Was there a tTG-IGA done? Was there a total serum IGA test done? If not, they should have been. And you would also need to supply reference ranges with regard to what is negative vs. positive, since different labs use different reference ranges for the same tests. Here is a primer to help you understand the different tests that can be run for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

In other words, it would not be possible to comment on your results without more information.

It typically takes about two years for complete healing of the villi once a truly gluten-free diet is begun. I agree with your medical practitioners' assessment that all looks good now. And I wouldn't worry. But always be on guard with regard to purchasing main line food products since companies can and do change their formulations. So, what once was gluten free may not be anymore or vice versa. How are you iron stores and have you had a dexascan to check for bone density?

[RMJ]

Quote

this looks to be a different range, although still marked as U/mL.

Good catch!  What is the new range/cutoff for normal? 

The units (U) in U/mL are arbitrary units set by each manufacturer. Each manufacturer of tests can set their own units. The numerical results from different test manufacturers can’t be compared.  

[Karen65]

12 hours ago, RMJ said:

Good catch!  What is the new range/cutoff for normal? 

The units (U) in U/mL are arbitrary units set by each manufacturer. Each manufacturer of tests can set their own units. The numerical results from different test manufacturers can’t be compared.  

 

20 hours ago, trents said:

Welcome to the forum, Karen65!

The test names and numbers you provide are a little confusing. Was there a tTG-IGA done? Was there a total serum IGA test done? If not, they should have been. And you would also need to supply reference ranges with regard to what is negative vs. positive, since different labs use different reference ranges for the same tests.

    Thank you! I had and have zero symptoms and tested at the suggestion of my first degree relative who has/had every classic symptom of celiac disease. The tTG-IgA blood test for the first time was at the start of 2019. That was 3.71, with negative between 0-20. The GLIADIN AB IGG in U/mL was also negative, with 5 results over 3 years between 3 and 6, well under the undetected range. The only flagged result was for the deanimated GLIADIN peptide AB IGA, those results were in my first query, all flagged high over 3 years until last week of "1.6", a drop from 27.

It typically takes about two years for complete healing of the villi once a truly gluten-free diet is begun. I agree with your medical practitioners' assessment that all looks good now. And I wouldn't worry. But always be on guard with regard to purchasing main line food products since companies can and do change their formulations. So, what once was gluten free may not be anymore or vice versa. How are you iron stores and have you had a dexascan to check for bone density?  

I already follow/ed a no processed foods local, organic semi- vegan diet with healthy iron levels, bone density and vitamins already monitored carefully, no deficiencies. It really wasn't difficult, living alone and 97% of the time cooking for myself to eliminate gluten from any source, and I am really scrupulous, don't eat out, etc. So I also went back to 100% vegan since I learned that can be an issue. Interesting that when I did I had some massive vertigo and found a physician's blog detailing a similar experience when first going gluten and dairy free. Anyway, it resolved and hasn't been an issue since. I posted because my clinic is using the same lab (Qwest Diagnostics) but I believe they either erred when entering this result or have changed to a different range- but my lab report still shows U/mL and the cutoff has now changed to < 15 rather than <30. As well, the endoscopy didn't reveal any damage! My relative wonders if I have "pre- celiac", I guess like pre- diabetes? I have combed the Internet and found one British site that seemed to use 1.0 as the cut off. My IGG was reported as "less than 1.0" with no reference range and the IGA was 1.6. This makes me wonder if it's still elevated, but I have no reference as to how it compares to the previous #s like 27...more thanks!

 

 

[Karen65]

13 hours ago, RMJ said:

Good catch!  What is the new range/cutoff for normal? 

The units (U) in U/mL are arbitrary units set by each manufacturer. Each manufacturer of tests can set their own units. The numerical results from different test manufacturers can’t be compared.  

Thank you! The doctor finally agreed it could be an error and agree to refer for a retest. As above, they haven't changed labs that I am aware of...

[C4Celiac]

biopsy can miss villi damage

[Karen65]

3 hours ago, C4Celiac said:

biopsy can miss villi damage

Thank you- I have read that. I never had any symptoms when I started down this path 3+ years ago. It took me months to get over the colonoscopy/endoscopy combo ( I think it was the prep process for the former that wreaked havoc). Were it not for the one elevated test I would just happily go forward baking my old way. This test is for deanimated peptide IgA. The range for it being detected was 20, now seems to be 15. Mine was 27 a year ago and, albeit slowly, coming down from 34. Now 1.6? I believe it's a different range not on the report  or an error. I just can't believe it dropped that far,  convinced my Dr and am retesting. I am hoping it's correct and that all the gluten-free/vegan changes did bring it down!

[C4Celiac]

why? if you're not eating gluten it goes back to normal range eventually

endoscopy was simple.. never had the other thing

[Karen65]

     Greetings, again- I have retested specifically for deanimated gliadin AB IGA. To be clear, I had zero symptoms prior to my initial round of blood work, including the (negative) endoscopy, but tested at the urging of my first degree relative (who had about every celiac symptom one can have). All the lab work was towards the low end of the normal range with the exception of the test referenced above.

    I tested at the start of 2019 and it was 34, flagged high when the cut off for detectable antibodies was <20 (now it is <15). Already at that time on a very careful diet that was local, organic and vegetarian, with no processed foods, I cut out all gluten and dairy. Had a horrible and scary bout of vertigo initially, but otherwise no change in how I ever felt. Tested again a few months later, it had dropped to 30. Assumed maybe, per my relative, I could be "pre- celiac" and was fortunate to have found out. The following test results were 32, 32, then 27 a year ago.

    Now, 3 years later, I received the "1.6" that prompted my first question on this thread. Did it in fact drop that significantly? But why does it now have a decimal point when using the same reference range of <15? The repeat I got today was a "2.0". Again, then, why in the past were the results not presented as 30.0, etc? 

      The lab can't/wouldn't help, the doctor says just be happy it is now so low (!). I made an apt with a gastroenterologist to go over the lab results and try to get an answer that makes sense. Unless it's true and going gluten and dairy free made a difference. I was just hoping someone would have experience with this test range, I don't need advice about the specifics of celiac, etc.

     Thank you!