Antibodies Elevated After A Year Plus - Mayo Test

[April in KC]

Recently, I asked my GI to recheck my antibodies after a year gluten free. I have gained a needed 10 lbs in the last year - and my Celiac son's TTG antibodies have fallen in the same time period. Symptom-wise, i am sensitive to CC, and I eat more carefully than the rest of my gluten-free family. I have some lingering health issues I chalk up to a lifetime of eating the wrong diet.

I read somewhere that when you're testing for dietary compliance, it makes sense to retest whichever of the tests were initially positive. In my case, it was my AGA-IGA that was positive (unlike my husband, who had positive TTG - and our oldest son, who had positive EMA, TTG, IGA, and IGG).

My doc ordered the entire panel...the EMA, TTG, AGA-IGA, and AGA-IGG. The samples were sent off to Mayo for reading. The EMA, TTG, and AGA-IGG came back cleanly negative - yea!!! (But those were never positive...) However, the AGA-IGA was really positive...like 73! More than double the reference range limit.

I asked my GI about this, and he said, "sometimes the antibodies don't fall." Does anyone else have experience with this? Does anyone else have AGA-IGA as their "primary" antibody, like me? I know that different antibodies can fall at different rates, but I am having trouble finding information on this.

Also, the lab printout said that the test was for "deamidated" antigliadin antibodies. Somewhere (here?) I read that there is a newer-generation antigliadin antibody test that is both sensitive and specific. I wonder if this was the test I had this time.

Any thoughts? I really feel like, with my sensitivity and with my husband also having Celiac, that I would know if I were consuming gluten regularly. And whatever intestinal damage was there clearly isn't anymore...my weight loss has reversed.

Still, it kind of freaked me out to see such a strong positive after a year gluten-free!

Also - the day i went to be tested I did happen to have a mild CC reaction occurring - enough to make my elbows itch but not break out. It was gone within the day... Do you think I could have "spiked" positive antibodies that high just on the basis of a CC reaction??

Thx - April

[ravenwoodglass]

How often are you having the minor CC reactions? When you have a reaction from even small amounts of CC it reactivates the antibody response. Those antibodies can take a long time to clear the system, when we have DH, which it sounds like you might, the antibodies remain in the skin for up to 2 years. I do not know how long they remain in the rest of the system. How high was that reading when you were first diagnosed? Has it gone down significantly? It sounds like you have a gluten free house but you also mention that you are still having some issues. Are you still consuming oats and distilled gluten grains? They are safe for some of us but not for all. I don't know if you have already eliminated them but if you havent' you may want to for a bit and see if it helps.

[April in KC]

How often are you having the minor CC reactions? When you have a reaction from even small amounts of CC it reactivates the antibody response. Those antibodies can take a long time to clear the system, when we have DH, which it sounds like you might, the antibodies remain in the skin for up to 2 years. I do not know how long they remain in the rest of the system. How high was that reading when you were first diagnosed? Has it gone down significantly? It sounds like you have a gluten free house but you also mention that you are still having some issues. Are you still consuming oats and distilled gluten grains? They are safe for some of us but not for all. I don't know if you have already eliminated them but if you havent' you may want to for a bit and see if it helps.

All good questions/thoughts, ravenwoodglass. The minor CC reactions - about once a month (no longer tied to my menstrual cycle so I think they are CC reactions). I do have DH. It takes a little bigger reaction to give me D and mouth sores...that has only happened a couple times in the past year....which is a couple too many - but still did not involve "frank" amounts of gluten...i.e. I did not cheat, so it would have had to have been crumbs, or hidden flour.

Interesting that DH antibodies can stay in the skin 2 years.

When I was first diagnosed, that same result was a tad LOWER, but it was a different lab interpreting the result. In the future, I will try to track with the same lab (Mayo) each year so I have a reference point.

I did try gluten free oats a couple of times in the past year. Both times I didn't have dramatic reactions, but I also didn't feel 100% - so I don't eat them now.

Distilled grains (as in vinegar) are a good idea for targeting. I don't know that I have been careful enough with those.

I found a really interesting article that made me question some of the gluten-free foods I have been eating. I will post it later.

Am I reading from your tag line that you are not DQ2 or 8? If so, I might mention it to a friend who is wondering whether she could have Celiac without the genes.

Other foods that have caused symptoms in the past or present - corn, coconut, rice (which I currently eat - seemingly without problems), milk. But I would not think any of those foods would cause an anti-GLIADIN antibody test to be positive.

Thanks for the thoughts! Reallly! It helps to examine things.