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Test Results How Reliable?


TomBone

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TomBone Newbie

Hi all, happy to find this forum!

In the last few months I've had stomach & digestion issues and wanted to check whether it has anything to do with gluten.

I used to eat at least 2 loafs of bread every day as well as other products which seem to have gluten (beer, cookies, soy sauce, etc.).

The doc I asked for a test, made me do four different tests (sorry if the test names are not 100% correct, I'm trying to translate them from Spanish):

 

Antic. Anti endomysial IgA - negative
Antic. Anti endomysial IgG - negative
Transglutaminasa IgG - 9.7U/ml (positive above 10)
Transglutaminasa IgA - 8.3U/ml (positive above 10)

Now, I'm wondering what exactly those results mean. On first sight, they are negative, but Transglutaminasa IgG is very close to the threshold. In fact, I stopped eating bread around 2 weeks before the test (but occasionally had things with gluten) and didn't drink beer for more than 2 months. Could the values have dropped just below the threshold because of that?

How high are valued typically if you have celiac disease? Would they be well over 10U/ml?

I'm hesitant to do any additional testing due to the high cost (my insurance refuses to cover it).

 

Also, from what I've read it's possible to be gluten intolerant but celiac disease negative? Are the negative effects on the gut similar in both cases or is it health-wise ok to eat gluten if intolerant?
Sorry for the very basic questions but I'm pretty new to all this and find the available information quite confusing...

 


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nvsmom Community Regular

I like to refer to this report when discussing test reliability: Open Original Shared Link 

On page 12 it shows the sensitivity of the EMA IgA and tTG IgA, which is the likelihood of the disease being caught by the test.  Both tests can miss up to 25% of celiacs with a sensitivity of 75-100% and 75-95%. They are pretty good tests for most celiacs.

 

The endomysial tests (EMA) are similar to the tTG tests but they tend to detect more advanced disease.  If you are relatively new to celiac disease, it is possible to get a positive tTG with a negative EMA.  It is very unusual for a celiac to get a positive EMA with a negative tTG though.

 

The tTG IgG is not a very sensitive test.  It's sensitivity is as low as 40% which means it can miss the majority of celiacs.  This report discusses it a bit: Open Original Shared Link

 

Your tTG results are both fairly close to being positive and I would be suspicious too.  You might want to request the DGP IgA and DGP IgG (deaminated gliadin peptides) tests.  Those tests are the best for detecting early celiac disease and sometimes catch cases of celiac disease that the tTG tests do not.  

 

Make sure you are eating gluten in the 2-3 months prior to testing.

 

Another option is the biopsy.

 

If you can't get further testing, or the tests are negative, you should be retested every year or so if you continue to eat gluten.  If you decide to go gluten-free anyways, further testing is not crucial.

 

Best wishes and welcome to the board.  :)

TomBone Newbie

Nicole, I appreciate your reply and link to the report. I will check with my doctor if they can do DGP tests here.

nvsmom Community Regular

Good luck!

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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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