Antibody Levels

[elle's mom]

My daughter was diagnosed with celiac disease in nov 07 by IgAttG and endoscopy. At that time her ttg was over 1000 (I got this verbally from her pediatrician-I didn't actually see the report). Then, we had her antibodies rechecked in Jan 08 (about two and a half months after starting gluten-free diet)-they were then in the "300 range" (again verbal information). I started freaking out because I thought we were being VERY careful, doing everything right, only giving her gluten-free food. Well, no one from the medical community including our pediatrician, pediatric GI, or dietician from the ped GI's office, told us up to that point about cc......we had been double dipping, using same toaster etc.

OK, so major household changes occurred and we finally (after being scared to do so) had her antibodies checked again May 2009-they were now 44 (I actually saw the report this time). Still high, but at least much improved, but still NOT normal. Again, I freak out-that's when I found this forum-realize our soap and toothpaste or fine, but MY shampoo (not hers) does contain gluten. That is the only culprit I find. She was still playing with playdough on rare occassion but washing her hands afterwards; but we cut that out anyway. Vitamins, fiber, everything else checks out to be gluten-free. We did get her a McDonalds cheeseburger no bun on occassion, we thought possible cc so cut that out too.

My question is how long before we should get them checked again??? ie how long does the body take to purge antibodies once you are completely gluten-free?

Our pediatrician is somewhat educated about celiac, but not totally. I basically ask him to do what I want and he does it. I have to give him some credit compared to some of the other posts I read, he's OK. At least he ran the celiac panel to begin with. We do not currently take her back to the PedGI that did the endoscopy because he was very patronizing, his office seemed very unorganized, plus it's over 2 hours away for us.

The second question I have is, while we're at it (getting the blood drawn) what else should we have checked? (specific vitamins); as I've been reading deficiencies can be common in celiacs.

Obviously having a 4yo get blood drawn is traumatic so I don't want to do it too soon and have it be pointless, and I don't want her to end up feeling like a pincushion, rechecking them over and over. I'm hoping once we get them down below 20, my understanding is that this is the "normal" range, we will only need to do it once a year. On the other hand I feel like we finally got things nailed down with the cc and I want her levels to be proven "normal" before she starts pre-school. That way I can know if there's a slip-up it's not something we're doing at home, as long as our household remains constant. Anyone with knowledge please help. Thanks.

[ravenwoodglass]

It sounds like you are doing a good job of eliminating what you need to eliminate. It sounds like it has been about 3 months since her last blood test. Since there are other blood levels that you want to have accessed it won't be a bad idea to go ahead and check them at the same time. She should have her B12, folate, iron, D, and IMHO any other vitamin and mineral levels that they can check checked. My Gi said they usually check every 6 months or so but different doctors want to do it at different times. Her antibodies were really high and you have brought them down a lot. Hopefully the new changes will bring them down to normal levels.

[elle's mom]

It sounds like you are doing a good job of eliminating what you need to eliminate. It sounds like it has been about 3 months since her last blood test. Since there are other blood levels that you want to have accessed it won't be a bad idea to go ahead and check them at the same time. She should have her B12, folate, iron, D, and IMHO any other vitamin and mineral levels that they can check checked. My Gi said they usually check every 6 months or so but different doctors want to do it at different times. Her antibodies were really high and you have brought them down a lot. Hopefully the new changes will bring them down to normal levels.

Thanks ravenwoodglass, I really appreciate your input.

Can anyone tell me how long (or short) they've went between a high antibody level and a normal one?

[Gemini]

My daughter was diagnosed with celiac disease in nov 07 by IgAttG and endoscopy. At that time her ttg was over 1000 (I got this verbally from her pediatrician-I didn't actually see the report). Then, we had her antibodies rechecked in Jan 08 (about two and a half months after starting gluten-free diet)-they were then in the "300 range" (again verbal information). I started freaking out because I thought we were being VERY careful, doing everything right, only giving her gluten-free food. Well, no one from the medical community including our pediatrician, pediatric GI, or dietician from the ped GI's office, told us up to that point about cc......we had been double dipping, using same toaster etc.

OK, so major household changes occurred and we finally (after being scared to do so) had her antibodies checked again May 2009-they were now 44 (I actually saw the report this time). Still high, but at least much improved, but still NOT normal. Again, I freak out-that's when I found this forum-realize our soap and toothpaste or fine, but MY shampoo (not hers) does contain gluten. That is the only culprit I find. She was still playing with playdough on rare occassion but washing her hands afterwards; but we cut that out anyway. Vitamins, fiber, everything else checks out to be gluten-free. We did get her a McDonalds cheeseburger no bun on occassion, we thought possible cc so cut that out too.

My question is how long before we should get them checked again??? ie how long does the body take to purge antibodies once you are completely gluten-free?

Our pediatrician is somewhat educated about celiac, but not totally. I basically ask him to do what I want and he does it. I have to give him some credit compared to some of the other posts I read, he's OK. At least he ran the celiac panel to begin with. We do not currently take her back to the PedGI that did the endoscopy because he was very patronizing, his office seemed very unorganized, plus it's over 2 hours away for us.

The second question I have is, while we're at it (getting the blood drawn) what else should we have checked? (specific vitamins); as I've been reading deficiencies can be common in celiacs.

Obviously having a 4yo get blood drawn is traumatic so I don't want to do it too soon and have it be pointless, and I don't want her to end up feeling like a pincushion, rechecking them over and over. I'm hoping once we get them down below 20, my understanding is that this is the "normal" range, we will only need to do it once a year. On the other hand I feel like we finally got things nailed down with the cc and I want her levels to be proven "normal" before she starts pre-school. That way I can know if there's a slip-up it's not something we're doing at home, as long as our household remains constant. Anyone with knowledge please help. Thanks.

Checking a person's tTg level is not the correct test for compliance to the gluten-free diet. I cannot believe so many doctors use this test for it and then try to tell someone they are still ingesting gluten in their diet. It's not a bad thing to re-test to see BUT they should also do the following tests.......

The correct testing for dietary compliance is the AGA IgA and the AGA IgG tests and these numbers need to be as low as possible in the normal range. The reason for NOT using the tTg test alone is that other autoimmune problems can cause an elevated tTg, like Hashi's thyroid, autoimmune liver disease and others.

So, either your daughter has not had enough time for her tTg to come down, which is very common OR she has other autoimmune problems brewing which the doctor is missing. That may be the case as her tTg is still slightly elevated after a year but you won't know for sure until she is re-tested again.

My tTg levels are always in the high normal range because I have 4 autoimmune diseases. It's impressive I have been able to get this into the normal range, albeit higher than I'd like. I was first re-tested at 1 year, by my choice. The only tests I pay attention to are the ones I mentioned above as they are the only tests that will tell you if you are still ingesting gluten. There ought to be a required refresher class for the medical profession.......

I would wait another 6 months to re-test her again. FYI....my thyroid antibody testing is STILL slightly elevated, by 6 annoying little points, and this is what is keeping my tTg in the high normal range. I went for many years with undiagnosed celiac disease so this may be as good as it gets for me. Your daughter is only 4 so she will fare much better, in the long run. My AGA numbers are really, really good so I know there is no gluten anywhere in my diet. I also do NOT screen personal care products for gluten-free status, except for lip and mouth products, and I have brought my numbers down from astronomical also. Relax, be patient and you will get there.

[elle's mom]

OK gemini (or anyone else who is knowledgable)........I didn't pay attention to it on the lab report before because it wasn't flagged as abnormal like the ttg was but, I believe this is what you're talking about:?

Gliadin ABS, IgG + IgA

Gliadin AB, IgA 2 (normal <20)

Gliadin AB, IgG 4 (normal <20)

So this is good right!? I can't believe I never even noticed this part of the report before; I guess we have a good pediatrician after all..........although he didn't stress that this was good; but I'm just so happy that this means she ISN'T inadvertently getting gluten!..............that is what it means, right???

So do you think there just hasn't been enough time for her ttg to come down since it was so high to begin with if it was over 1000?

[Gemini]

OK gemini (or anyone else who is knowledgable)........I didn't pay attention to it on the lab report before because it wasn't flagged as abnormal like the ttg was but, I believe this is what you're talking about:?

Gliadin ABS, IgG + IgA

Gliadin AB, IgA 2 (normal <20)

Gliadin AB, IgG 4 (normal <20)

So this is good right!? I can't believe I never even noticed this part of the report before; I guess we have a good pediatrician after all..........although he didn't stress that this was good; but I'm just so happy that this means she ISN'T inadvertently getting gluten!..............that is what it means, right???

So do you think there just hasn't been enough time for her ttg to come down since it was so high to begin with if it was over 1000?

Her Antigliadin numbers are excellent!!!!!!!! What that means is she is NOT consuming gluten in her diet. Really! These are the tests to check for that. I would definitely say her tTg is still not normal because of the severe elevation at time of diagnosis. Yes, I am not a doctor but the lab I had my testing done at (Genova) does a fantastic job of detailing results, in layman's terms, and explains what each test means. I studied it and asked my own doctor questions and learned a lot about them so I guess you could call it an educated opinion.

My advice would be to wait a bit longer and see if they come down even more. If you get a couple of re-checks and they haven't moved much, I would start to pay attention to see if she is symptomatic for any other autoimmune problems which would show in the tTg test.

Some of these include Hashimoto's thyroid disease and Sjogren's Syndrome. Please do not panic and think she has other problems because I really think it's just a matter of waiting for the tTg to come down. My tTg levels are still in the high normal range after 4 1/2 years

because I have 4 autoimmune problems. I wish it could be lower BUT the doc reassured me that anything in the normal range is OK as my tTg was over 200 at time of diagnosis. I am asymptomatic and the other problems have calmed down.

[elle's mom]

Thank you so much Gemini for this info. My dh and I are practically dancing a jig in our living room. We were so devastated when we got the ttg results; just because we've tried so hard to eliminate any traces of gluten; I'm sure you know how hard it is. It's almost worse when it's your child and they can't really communicate their symptoms. . . I soooooooo appreciate your knowledge!

[Gemini]

Thank you so much Gemini for this info. My dh and I are practically dancing a jig in our living room. We were so devastated when we got the ttg results; just because we've tried so hard to eliminate any traces of gluten; I'm sure you know how hard it is. It's almost worse when it's your child and they can't really communicate their symptoms. . . I soooooooo appreciate your knowledge!

If your daughter looks and acts and feels OK, this is a bigger indicator of how things are going. That was a pretty high tTg number to begin with so I think it's going to take awhile longer to get into the normal range. I think it's pretty impressive you've gone from around 1000 down to 44 in a child that young so I don't know why the doc would be concerned. The hard part now is to keep her totally gluten-free for the long haul but you'll get used to it and it really does become second nature. I think it better for a child to be diagnosed in that age group because there won't be years of eating habits to correct. She'll get comfortable with eating gluten-free and not remember anything else! Just make sure that when they repeat the tTg, to also repeat the AGA numbers as well so it'll give you a clearer picture of what's going on.

Keep up the good work....I know she'll get there soon!