Borderline test results - Celiac or NCGS?

[AHJM]

I would be very grateful for help with test results, please.

History: I've had IBS for around 25 years.  Mild itchy/blistery skin rashes (not traditional DH, more like contact dermatitis) and joint pain for at least 6 years.  Due to coincidental changes in eating habits and a 23andMe test ("1 variant detected in the HLA-DQA1 gene"), I started to suspect celiac.  I went mostly gluten free (avoided the obvious sources of gluten, missed a lot of hidden sources, and did nothing about cross contamination) for several weeks and started feeling much better, so I requested a blood test.  No one asked me whether I had been consuming gluten prior to the test, so the results probably aren't very reliable, but here they are:

Immunoglobulin A (IgA), S:    285 mg/dL     (normal = 61 - 356 mg/dL)
Tissue Transglutaminase Ab, IgA, S:    6.6 U/mL    (negative is <4.0 (Negative) U/mL)   Interpretation: Weak Positive (4.0-10.0)    
Endomysial Ab:    Negative 
Gliadin(Deamidated) Ab, IgA, S:    22.3 U     (negative is <20.0  U)  Interpretation: Weak Positive (20.0-30.0)

Biopsy was negative, but I was only back on gluten for 2-3 weeks before the biopsy.   So my official diagnosis is negative for celiac.

Since then, I've gone as gluten-free as I can manage, and my IBS is virtually gone, except when I've been glutened through accidental exposure (mostly foods that the restaurants say are gluten-free but I suspect they aren't).  I confirmed at least one incident of accidental exposure by testing the leftovers with an "EZGluten" test.  My symptoms now have become rather severe (sorry for the TMI, but I get diarrhea to the point of incontinence) compared to what I used to experience when I was still consuming gluten, which I understand is not an unusual experience.  So it's very clear to me that I'm at least highly gluten-sensitive, if not celiac.

But I'm having a lot of trouble staying gluten free.  There's only one restaurant in my area that I trust to be truly gluten free, and my family and friends are getting sick of it.  I'm planning on visiting Japan again, and one of the things I enjoyed most about visiting there was the food, and I understand it's nearly impossible to avoid gluten there because of the wheat in soy sauce.  I'm beginning to think that it might be better to go through life with just low levels of gluten rather than none at all, so that I can go to restaurants and travel without such severe reactions.  But I also don't want to harm my health if I'm legitimately celiac.  So I'm hoping for help from those of you with experience in borderline test results.  Thanks in advance for your help!

 

[trents]

Buy some GliadinX and take some before eating out. And do the best you can in ordering non gluten items from the menu. GliadinX can neutralize small amounts of gluten such as you get through cross-contamination. But it is not a license to disregard the need to avoid gluten altogether. 

Since your TTG-IGA is positive, albeit weakly positive, I would bet you do have celiac disease. I'm sure it would be a higher number had you not been working on eating gluten free before the test was done. Guidelines for pretesting gluten exposure is two slices of wheat bread daily (or the equivalent) for at least 6-8 weeks before the blood antibody test and at least 2 weeks before the endosocpy/biopsy.

To be honest, I am concerned about your plan to "go through life with low levels of gluten rather than none at all." Constant inflammation will take it's toll on your small bowel lining and open the door for a host of possible/likely serious health issues over time. But it's your life and your body. We all understand the social toll that having to avoid gluten can extract. But there are ways to take some control back in the situation with family and friends. It takes patient education and grace. 

Sounds like to me you need to go back on gluten for a longer period of time and be retested in order to confirm or not confirm a diagnosis. Some people need that to get serious about eating gluten free. It's too bad your doctors didn't warn you about not starting the gluten-free eating effort before testing but we hear the same thing all the time on this forum. In general, there is a woeful lack of knowledge in the medical community about gluten-related disorders.

[trents]

By the way, the TTG-IGA test is currently considered to be the best blood test currently available to detect celiac disease. Although it's best to run a "full" celiac panel, many physicians will only order the TTG-IGA. It is considered to be the most specific for celiac disease but not the most sensitive. So, when it is positive, even weakly positive, it needs to be taken seriously.

Edited June 28, 2021 by trents

[AHJM]

Thanks so much for your insights.  Since my doctors weren't much help with my unexplained symptoms or during my testing, I didn't figure they'd be much help in interpreting the results either!  My gut (no pun intended!) has been to treat this like celiac.  I'll have to think about it a while longer, but I've already begun to replace things in my kitchen that may have traces of gluten, so I'll probably continue with the strict gluten free lifestyle.  It's just such a bummer!  Thanks again.

[RMJ]

You could have your blood tests repeated after 6 months of being strictly gluten free and see if they return to normal levels.  If they do, that would be another indication that you have celiac and that gluten isn’t good for you.

[trents]

1 hour ago, RMJ said:

You could have your blood tests repeated after 6 months of being strictly gluten free and see if they return to normal levels.  If they do, that would be another indication that you have celiac and that gluten isn’t good for you.

Great suggestion!

[Scott Adams]

I agree with @trents and believe that had you continued to eat gluten daily your blood tests would likely have been higher levels, and if you mentioned to your doctor that you were mostly gluten-free leading up to those tests I'm sure they would agree (if they know much about how these tests work anyway!).

Going gluten-free in Japan isn't that hard, and ask for "Shoyu" soy sauce:

Quote

Shoyu is simply the name for the Japanese-style soy sauce, which can be light (usukuchi) or dark (koikuchi). ... Classically, it's made with only soybeans (and no wheat), making it more similar in flavor to Chinese-style soy sauce — and a great option for those who are gluten-free.

It would be good for you to get a gluten-free dining card in Japanese, or any other language where you travel to regularly. 

PS - I went on a trip to Tokyo a few years back, but I did have my sister in law with me who is Japanese, so it was easy for me to be gluten-free with her help.