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Antibody Levels

The Glutenator

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The Glutenator Contributor
The Glutenator
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

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sa1937 Community Regular
sa1937
Posted

I just got back from the gastroenterologist and am a bit confused. Before going gluten-free, my antibody levels were 53 when normal is 2 - 5 and anything above 18 is celiac. Needless to say I was a strong positive! About 6 weeks after going gluten-free I went for a second blood test and have finally gone for a follow up to get the results. My levels are the exact same! I am pretty sure I am completely gluten-free with my diet, because when I have been cc'd or glutneated boy do I know it! Are there any other reasons my antibody levels are the same? The doctor said I may have a very very sensitive immune system and that this level may be a plateau for me. Is this dangerous for my health? Any other explanations? I am a bit concerned right now and would love some feedback.

I'm questioning the short length of time you've been gluten free to be already testing for antibodies and expecting them to drop if you had significant damage at diagnosis. That being said, I really don't know what is recommended although my gastro suggested being retested in 6 months to a year.

I'm interested to see what others have to say about this, too...I've only been gluten free since April 9 and have not yet been retested.

Frances03 Enthusiast
Frances03
Posted

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Gfresh404 Enthusiast
Gfresh404
Posted

I would not be worried - I believe it takes a lot longer than 6 weeks for your antibodies to go down.

Wait at least six months - then if they're still high, that's when you can freak out.

The Glutenator Contributor
The Glutenator
Posted
  • Author

I'm not sure I understand how long you've been gluten free. It sounds like you said you had one test, then 6 weeks of gluten free later you had another, and then you've had a 3rd test?? But how long from the 1st to the 3rd if that is the case? My dr also said to re-test in 6mos to a year. My first test before diagnosis I believe my antibodies were 88 (it's in my sig) and I just had it redone, and it was down to 9.

Sorry for the confusion, I have only had two tests. The first one for diagnosis, and now a second. The second test was after 6 weeks going gluten-free, but then I had two wait 2 and a half months for a follow up appointment (my scheduling issues, not the doctor's...but now that I feel so great no need to rush back to the appointments, haha).

Thanks for your feedback. He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

sb2178 Enthusiast
sb2178
Posted

A second biopsy after 4 months? that didn't leave you much time to heal. I'd be inclined to just get blood work done at 6 months and then, if there is no change, to consider a second biopsy at one year. (But I tend to wake up during such things and remember them as rather uncomfortable.) Especially since you feel good! If you still felt awful, that would be another matter.

ravenwoodglass Mentor
ravenwoodglass
Posted

He is doing a second biopsy to make sure that is starting to look better. All I know is I feel so great these days.

I would get antibodies rechecked at 6 months and then if they are still elevated it might be appropriate to rebiopsy in case you are someone who has 'silent' celiac to make sure that damage is being repaired. IMHO rechecking at this point is too soon.

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Roda Rising Star
Roda
Posted

I had my antibody levels rechecked at 6 months and then again a little over a year later. I did have a repeat EGD and biopsy this April (1 1/2 years since last one) but I had the test for other reasons and since he was there he rebiopsied the small bowel to check progress. I my opinion I wouldn't rescope this soon. Wait for your six month blood work and then go from there.

heatherjane Contributor
heatherjane
Posted

My antibody levels were tested finally at near normal levels after 15 months from initial diagnosis. Definitely give it more time...your doc is too hasty.

The Glutenator Contributor
The Glutenator
Posted
  • Author

Good to hear. I am actually going away for the next couple months and won't have the endo until I get back, so the second biopsy will be over 6 months after being gluten-free. It's already booked and I wasn't very affected by it last time, so mind as well keep the appointment. It is really great to hear that I don't need to get too worried yet.

Kim27 Contributor
Kim27
Posted

I agree with everybody else, too soon to worry yet! What blood test are you talking about? tTG? My tTG level was 168 at first... 5 gluten free weeks later my doctor retested it only because I had to get some other bloodwork done anyway and it had dropped to 65. She did however make a point to say it's not normal to retest that quickly and that she wants to test again around 6 months gluten-free to see if it has dropped closer to more normal ranges since 65 is still too high but my body definitely didn't have enough time yet! It seems REALLY soon to have another EGD...

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      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.
    • trents
      Test interpretations

      By trents · Posted

      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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    • MicG
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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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