Need help interpreting results

[Lina5]

I’m new to this site, but have found it very informative. I’m trying to understand what my celiac results really mean.  I do not want a biopsy and I’ve read it’s not always necessary based on results. 
My Tissue Transglutaminase AB IGA is positive (14 with reference range <4 U/mL), Endomysial Antibody SCR (IGA) w/refl to Titer is negative, Immunoglobulin A is normal (170 with reference range 81-463 mg/dL), HLA typing shows I have one of the genes for celiac. Here are some additional test results that were done too: IgA Quantitative mg/dL 160 (normal range 65-421), Deaminated Gliadin IgA antibody is positive, Deaminated Gliadin IgG antibody is negative, Tissue Transglutaminase IgA antibody is positive, Tissue Transglutaminase IgG antibody is negative.
Given your understanding of celiac testing, what is your opinion of these results? Thank you! 

[trents]

Welcome to the forum, Lina5!

You have two celiac antibody levels that are positive: tTG-IGA and Deaminated Gliadin IGA. The tTG-IGA is the centerpiece of celiac antibody testing and is the single most commonly ordered tests by physicians. It combines good sensitivity with good specificity and is relatively inexpensive to run. The Deaminated Gliadin IGA (I'm assuming this is a variant spelling of "deamidated") is a parallel test that can be run in cases where there is sufficient symptomatic evidence to suspect celiac disease even though the tTG-IGA is negative. If total IGA is low than the tTG-IGA value will be suppressed. The IgA Quantitative mg/dL 160 (normal range 65-421) would seem to refer to total serum IGA which is in the normal range. Also, some people's immune systems just respond atypically to any test so that is another reason to run more than just tTG-IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It does appear likely you have celiac disease. If you do not go forward with the endoscopy/biopsy (considered to be the gold standard test for celiac disease) then the other option is to test the waters by going seriously gluten free to see if your symptoms improve. But doing the is usually more of a challenge than most people realize. This might be helpful: 

What symptoms are you experiencing that led to the antibody testing?

Another possibility is NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but for which there is no test. Celiac disease must first be ruled out. Other than that, the antidote is the same: total avoidance of gluten for life.

[Lina5]

On 6/19/2022 at 8:32 PM, trents said:

Welcome to the forum, Lina5!

You have two celiac antibody levels that are positive: tTG-IGA and Deaminated Gliadin IGA. The tTG-IGA is the centerpiece of celiac antibody testing and is the single most commonly ordered tests by physicians. It combines good sensitivity with good specificity and is relatively inexpensive to run. The Deaminated Gliadin IGA (I'm assuming this is a variant spelling of "deamidated") is a parallel test that can be run in cases where there is sufficient symptomatic evidence to suspect celiac disease even though the tTG-IGA is negative. If total IGA is low than the tTG-IGA value will be suppressed. The IgA Quantitative mg/dL 160 (normal range 65-421) would seem to refer to total serum IGA which is in the normal range. Also, some people's immune systems just respond atypically to any test so that is another reason to run more than just tTG-IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It does appear likely you have celiac disease. If you do not go forward with the endoscopy/biopsy (considered to be the gold standard test for celiac disease) then the other option is to test the waters by going seriously gluten free to see if your symptoms improve. But doing the is usually more of a challenge than most people realize. This might be helpful: 

What symptoms are you experiencing that led to the antibody testing?

Another possibility is NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but for which there is no test. Celiac disease must first be ruled out. Other than that, the antidote is the same: total avoidance of gluten for life.

The reason I tested is really by chance. I’ve had facial acne my whole life and as an adult I’ve had sensitive skin and yeast rashes and some eczema and occasional sensitive stomach for the past 30 years. The consistency of everything made me think there might be a food component, so I went to an allergist for food testing, but it came up with nothing. She suggested I test for celiac. I never had a direct cause/effect when eating gluten so I was confused and surprised by the results. She suggested I go to a specialist who did additional tests, but that doctor wasn’t good at explaining the test results and pushed me to get a biopsy, which I didn’t want without understanding more. 

I read your suggested links, but I’m still confused by all the negative test results I also received. Is that normal? 

Also, are any of the tests I’ve had the tTG2 that I’ve read about which can further determine celiac and if not, is it better at determining celiac then the other tests I’ve had?

Also, I understand I’d need to stay away from all gluten, but if I ate gluten once in a meal or was cross contaminated (which I might not know) is it a huge immediate concern or will the internal affects pass quickly? 

Thank you, I very much appreciate your help. 

[RMJ]

You’ve had the 5 standard blood tests for celiac (TTG IgA and IgG, DGP IgA and IgG, and EMA (Endomysial Antibody).  You don’t have to have all five positive to have celiac disease.  Some people are only positive on one, so your results are normal.

Eating gluten once in a meal if one has celiac disease is a definite concern. Think of it as a booster shot that will get your immune system all rev’d up again. Cross contamination is also a concern, but at least it is a smaller dose so less of a boost.

If you decide against the biopsy, you can have your antibody levels retested after being completely gluten free for 6-12 months to see if they go down. 

[trents]

It is not unusual for some celiac antibody scores to be positive with others negative. The main reason for that has to do with the fact that some of the tests are more sensitive than others.

I am not familiar with the tTG2 test. Is that a typo? If there is a best single antibody test for celiac disease it would be the tTG-IGA since it combines good sensitivity with good specificity. Having said that, there are those whose immune system reacts in an atypical way and so sometimes what the tTG-IGA test misses, others will catch. I don't know what else to tell you about that. The endoscopy with biopsy is considered to be the most reliable test for diagnosing celiac disease but you seem to not be willing to go there. I'm afraid you find yourself in this no man's land of uncertainty as a result since your antibody tests give mixed results and those that are positive are weak positives, tied together with the delayed reaction your describe. The weak positives/mixed results could be tied to the fact that you only have one of the two major celiac genes.

Celiacs are all over the map with how quickly they react to the ingestion of gluten. For me, I become violently ill after about 2 hours of ingesting a significant amount of gluten. I experience no symptoms until that point. Other people on this forum say they react immediately when ingesting gluten and others say the reactions don't come for 24 to 48 hr. I cannot say what your reaction pattern is or will be after going gluten free. What I can say is that many of us find that after being off of gluten for a significant amount of time, if we get accidentally "glutened", we react much more intensely than we did before attempting to go gluten free. 

My concern is that your uncertainty will lead to an inconsistent pattern in your commitment to eating gluten free and you will experience slow, smoldering damage to body systems.

If you decide to go forward with an endoscopy/biopsy realize that you should be eating significant amounts of gluten daily (equivalent of 2 slices of wheat bread) for at least two weeks leading up to the procedure in order for it to give valid results.

Edited July 4, 2022 by trents

[Aurélie]

I know you don't want a biopsy, but it's worth it.

I initially tested as a "weak positive" on the blood tests. Doctor advised gluten free diet.

Two years later, I was still feeling ill and did the biopsy. I had so much more damage than the blood tests could reflect. My doctor was shocked. So she takes my diagnosis a lot more seriously with vitamin and other testing now that she hadn't before.

I also learned my daily prescription medicine probably had hidden gluten in it and I was being poisoned daily (explaining other health problems I kept having).

My IgA is slightly low so my blood tests do not reflect my intestinal damage accurately. So I will now do a biopsy once a year.

I'm totally fine with this because the damage from celiac disease can be devastating and quite serious (and I'm mainly asymptomatic). At this point, I'd so much rather be safe than sorry later.

With a positive biopsy it's also easier to fight insurance on medicine free from cross-contamination. And without GI symptoms, I've had other doctors question my celiac diagnosis until I literally pull up the biopsy on my phone.

I was feeling so stupid having just paid $1,000 to get it done and feeling like a drama queen in that hospital bed, but getting the biopsy was the best decision I made health-wise.

Even if yours comes back fine, at least you know and at least you made sure bad things weren't happening to your body.