Ambiguous Results

[LauraLynn]

Hi all, my regular provider is booked out for a month and really hard to get a hold of.  My naturopath does have a Nurse Practitioner who was able to order the Celiac panel for me.  I had been off gluten for two weeks and already starting to feel like a million dollars.  This NP told me that according to the lab, I only needed to do a gluten challenge for 1-2 weeks to get any antibody response.  I had read elsewhere that most doctors are requesting anywhere from 6-12 weeks, but I was happy to cling to the 1-2 week guideline to avoid so much misery.

I ate gluten for 2 weeks, and tested "negative" on all counts.  The puzzling number is the IGA count.  The reference range was 70 to 400, and mine was 346.  It an elevated IGA count possible with Celiac?  (I thought IGA deficiency defined Celiac?) Could this number have gone higher had I continued to eat gluten for longer?

Also, for those of you who had dermatitis herpetiformis, did it coincide with regular eczema?  Did any of you with Celiac have just eczema and no DH?  I had a dermatologist P.A. perform a skin biopsy, but I'm worried that he may have gotten just a patch of eczema rather than the larger burst blisters on my leg.

At this point, I just want answers and closure, but I know that this can be a seemingly elusive goal with gluten-related and G.I. symptoms.

[trents]

First of all you got a bum steer with regard to how long the pretest gluten challenge is. The Mayo Clinic recommends eating an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks before the antibody test. Two weeks is two short for that. That may be why you tested negative. The two week recommendation applies to the endoscopy/biopsy. You should be retested after getting back on gluten for a longer time.

Your IGA count of 346 is within normal range. But that is total IGA. The centerpiece IGA test is the tTG-IGA. tTG-IGA can be skewed downward when total IGA is low. Not your problem.

If you have DH then you have celiac disease. There is no other known cause. So, you need to get that nailed down as well.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test and it does not produce DH. It is 10x more common than celiac disease.

 

[Wheatwacked]

1 hour ago, LauraLynn said:

I had been off gluten for two weeks and already starting to feel like a million dollars.

In my mind this supersedes any test that indicates you are not. Now to convince the doctors. Did your skin also improve with the GFD? 

[LauraLynn]

1 hour ago, Wheatwacked said:

In my mind this supersedes any test that indicates you are not. Now to convince the doctors. Did your skin also improve with the GFD? 

Absolutely it did!  It still itches, but those gross, large, red-purple scabs are going away.  I never did see blisters, however.  I'm not sure if those are required to constitute DH.  The fatigue, bloating, and diarrhea also subside when I do the GFD, although my naturopath did explain that it takes time and patience because gluten stubbornly remains in the body for a few months.  I see my regular Nurse Practitioner for an annual physical next month and will run all of this by her.

2 hours ago, trents said:

First of all you got a bum steer with regard to how long the pretest gluten challenge is. The Mayo Clinic recommends eating an amount of gluten equivalent to two slices of wheat bread daily for 6-8 weeks before the antibody test. Two weeks is two short for that. That may be why you tested negative. The two week recommendation applies to the endoscopy/biopsy. You should be retested after getting back on gluten for a longer time.

Your IGA count of 346 is within normal range. But that is total IGA. The centerpiece IGA test is the tTG-IGA. tTG-IGA can be skewed downward when total IGA is low. Not your problem.

If you have DH then you have celiac disease. There is no other known cause. So, you need to get that nailed down as well.

It is also possible that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test and it does not produce DH. It is 10x more common than celiac disease.

 

I agree about the "bum steer."  I made a type-o.  IGA is 396, not 346.  

I'll look into NCGS, although unfortunately I find it's taken a lot less seriously than Celiac.  😞  Whatever.  That's my own weight to bear, and I'll learn to assert my boundaries regardless.  

[trents]

396 is still within normal range for total IGA. High end of normal. If was low, that would be something that would suppress the individual IGA test numbers. I get the feeling that you are not comprehending that total IGA count is not what they use to diagnose celiac disease. Maybe this  will help:  https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[LauraLynn]

34 minutes ago, trents said:

396 is still within normal range for total IGA. High end of normal. If was low, that would be something that would suppress the individual IGA test numbers. I get the feeling that you are not comprehending that total IGA count is not what they use to diagnose celiac disease. Maybe this  will help:  https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Point well taken.  I'll still be taking these results with a grain of Morton salt given my own poor preparation for the blood draw.  The dermatologist will have more reliable results.  Either way, I think it's the end of gluten for me. 

[trents]

I'm not familiar with how going gluten free beforehand will affect the result of a skin biopsy by a dermatologist. I'm assuming it may have the same impact as going gluten free prior to blood antibody testing since DH is just the epidermal form of gluten antibody manifestation. But I don't know that for sure. Maybe you'd better research that. Can anyone here on the forum comment on that question?

Edited March 9, 2022 by trents