Positive Celiac Blood Tests After 6 Mos gluten-free

[CAP2012]

The GI who confirmed my celiac with a biopsy ordered celiac panels at 3 and 6 mos post Gluten Free diet. Both tests, at 3 mos and 6 mos. post gluten-free diet have come back positive. I'm curious about others experience with this. I'm 99.9% certain I haven't ingested gluten. The only way would be through cross contamination or if people/companies are lying to me about how their food is prepared/processed. I don't even eat anything processed with wheat and I am highly suspect of any processed foods even if they claim to be gluten-free (meaning I don't eat it if it has any gluten 20ppm included.) One thing that is interesting to me is that two of the numbers are going down while one is staying steady at >100. I am so curious to know if anyone has any experience with this. When should I expect these tests to normalize? Here are the more specific numbers:

March 2011 (eating lots of gluten - prediagnosis)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 14.8 U/ml

Gliadin IGA antibodies >100.0 U/ml

September 2011 (3 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 5 U/ml

Gliadin IGA antibodies 28 U/ml

December 2011 (6 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 4 U/ml

Gliadin IGA antibodies 9 U/ml

Thanks for your time!

Carla

[ravenwoodglass]

March 2011 (eating lots of gluten - prediagnosis)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 14.8 U/ml

Gliadin IGA antibodies >100.0 U/ml

September 2011 (3 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 5 U/ml

Gliadin IGA antibodies 28 U/ml

December 2011 (6 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 4 U/ml

Gliadin IGA antibodies 9 U/ml

Thanks for your time!

Carla

Welcome to the board. Your gliadin IGA and IGG are both coming down nicely. How are you feeling? Have most of your symptoms gotten better?

Since they aren't giving any numbers other than over 100 for the TTG it may be actually coming down as we don't really know how high it was to begin with.

Others have more knowledge about the TTG than I so hopefully they will be on soon to give some insight.

[Gemini]

The GI who confirmed my celiac with a biopsy ordered celiac panels at 3 and 6 mos post Gluten Free diet. Both tests, at 3 mos and 6 mos. post gluten-free diet have come back positive. I'm curious about others experience with this. I'm 99.9% certain I haven't ingested gluten. The only way would be through cross contamination or if people/companies are lying to me about how their food is prepared/processed. I don't even eat anything processed with wheat and I am highly suspect of any processed foods even if they claim to be gluten-free (meaning I don't eat it if it has any gluten 20ppm included.) One thing that is interesting to me is that two of the numbers are going down while one is staying steady at >100. I am so curious to know if anyone has any experience with this. When should I expect these tests to normalize? Here are the more specific numbers:

March 2011 (eating lots of gluten - prediagnosis)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 14.8 U/ml

Gliadin IGA antibodies >100.0 U/ml

September 2011 (3 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 5 U/ml

Gliadin IGA antibodies 28 U/ml

December 2011 (6 mos. gluten-free)

transglutaminase IGA >100.0 U/ml

Gliadin IGG antibodies 4 U/ml

Gliadin IGA antibodies 9 U/ml

Thanks for your time!

Carla

Hi Carla,

Your IgA/IgG antibodies are coming down very well, which means you are not ingesting gluten so stop worrying about that. If you were, those numbers would still be higher. The vast majority of people also do well with processed gluten-free goodies...they are not as contaminated as some claim they are. If they were, no one would heal. It's good you eat a mainly unprocessed diet but do not deny yourself food because you think they may have gluten. Stick with dedicated facilites, like many here do, and you should be fine.

As far as your tTg is concerned, when that stays elevated it can be a couple of things. You may need more time to heal as it can take a while to normalize tTg BUT it has stayed stubbornly over the 100 mark, which is very high. Mine was around 200 when diagnosed and I did not re-test for 1 year. It was in the normal range but high normal and took another 2 years to get into the low normal range. The reason for that is because I have 3 other autoimmune diseases, related to Celiac, and those can keep tTg high. Too much inflammation in the body. Have you been screened for other autoimmune problems? Hashi's thyroid disease, liver disease and Sjogren's Syndrome, to name a few, can be the reason for a high tTg. Do you feel well or do you have other symptoms? I do not wish to scare you but it is extremely common to have other autoimmune issues with Celiac. Celiac is not the only disease to elevate tTg. Also, do not let any doctor tell you that an elevated tTg is from eating gluten....it could be but then your other numbers shown on your testing would NOT be coming down so well....those are the tests for dietary compliance, not tTg.

If you are feeling well overall, I would wait until the 1 year mark and re-test the numbers...all of them. If your tTg still hasn't come down, you should probably be screened for other autoimmune issues. I wouldn't worry until you have gone a full year...healing can take a long time as anyone on this board will verify. You have to be very patient!

[CAP2012]

Thanks for both replies. It's very helpful as it confirmed my "gut" feeling that my GI was being a little overzealous in her assumption that I'd eaten gluten. I also wondered how she could tell the other number >100 wasn't going down when who knows where it started. Anyway, again this is very helpful! I also should have mentioned that I feel like a new person since I cut gluten out of my diet. I didn't realize how bad I felt until I felt better.

[Gemini]

Thanks for both replies. It's very helpful as it confirmed my "gut" feeling that my GI was being a little overzealous in her assumption that I'd eaten gluten. I also wondered how she could tell the other number >100 wasn't going down when who knows where it started. Anyway, again this is very helpful! I also should have mentioned that I feel like a new person since I cut gluten out of my diet. I didn't realize how bad I felt until I felt better.

They always do that! They blame the patient when they can't figure it out. I think it wrong to just measure tTg over a certain number because then you don't know if it is coming down unless it dips below that threshold.

Yours could have been 300 for all we know. If you feel like a new person, then congratulations on a job well done. That is the sign that you are doing everything correctly. It really can take a long time for everything to calm down....it took me 3 years of a strict gluten-free diet to see my last symptoms go bye-bye!

I find that doctors like to overblow everything because they can keep you in their office more and subject you to more tests. I went away after diagnosis and didn't return to the doctor until 1 year later. She wasn't too happy but I did not care. I felt so good after going gluten-free, for the most part compared to the zombie I was, I didn't feel the need to go back. I just learned the diet and ate well and healed slowly. You'll be fine but if you do develop any annoying symptoms, that's when you go back....not when you are doing well. Stay positive!