I Flunked The 6 Month Follow-Up Blood Test - Help!

[Newbee]

So I had my 6 month follow-up blood test from having been gluten free (TTG IGA). My original score was 125. Even though it appears I've probably had the disease my whole life (I'm 37 now) my doctor was very confident I would be back to normal after 6 months. But I'm not. My result this time was 33. For this test they said anything higher than 19 is considered positive and anything higher then 30 is considered moderate to severely positive. So I'm trying to figure out if I'm still getting some gluten by perhaps cross contamination (I still eat processed foods but I do read the labels and check with manufacturers and such) or if it is just taking longer to get all this stuff out of my system (I've read it can take longer if you've had the disease for awhile).

Have others who have suffered from the disease for a long time before diagnosis taken longer than 6 months to have a normal blood test? I've been wondering why I haven't been feeling much different from when I was eating gluten. Could it be because it is still in my body? Maybe I will start feeling different once the test comes back normal? Has anyone had experience with this?

[Takala]

Think of it this way: you're trending well and with a bit of fine- tuning, you should be able to get it down further.

I don't know where doctors come up with this "back to normal" in a few months routine, even for people like me, who felt much different and less sick within 24 hours within quitting gluten, we are older, so had so much damage and other complicating auto immune conditions we will never feel completely "normal." Maybe functional. Several years into it the current PCP doc did do a blood test and I came out very low numbers which the ding a ling office intrepreted as Not Celiac and I intrepreted as Hot D*mn Look It's Not Zero, it was like an archaeology find of a imprint in lava of something that had dissolved a thousand years ago. (I have no "formal" diagnosis because of this inability to test like this, but I did have brain lesions and bone damage. duh!)

Are you in a mixed gluten consuming/non consuming household ? Start exploring more ways you could be getting cc'd and try weeding it out. Look at supplements also, hair conditioners with wheat (yuck), as well as pet foods if you have pets.

[Newbee]

Think of it this way: you're trending well and with a bit of fine- tuning, you should be able to get it down further.

I don't know where doctors come up with this "back to normal" in a few months routine, even for people like me, who felt much different and less sick within 24 hours within quitting gluten, we are older, so had so much damage and other complicating auto immune conditions we will never feel completely "normal." Maybe functional. Several years into it the current PCP doc did do a blood test and I came out very low numbers which the ding a ling office intrepreted as Not Celiac and I intrepreted as Hot D*mn Look It's Not Zero, it was like an archaeology find of a imprint in lava of something that had dissolved a thousand years ago. (I have no "formal" diagnosis because of this inability to test like this, but I did have brain lesions and bone damage. duh!)

Are you in a mixed gluten consuming/non consuming household ? Start exploring more ways you could be getting cc'd and try weeding it out. Look at supplements also, hair conditioners with wheat (yuck), as well as pet foods if you have pets.

I live by myself so no issues with anyone consuming gluten in my house. I have looked at gluten in everything as you mentioned (hair conditioners, shampoo, anything I put on my face, etc.). What kind of freaks me out is if I could be getting some kind of cross contamination from some processed thing where I can't find information from the company admitting their could be cross contamination. Sorry to hear you have bone damage too (I have osteopenia). I'm sure this disease is what zapped my memory too. I used to remember everything and now I can't remember anything. I'm hoping that starts getting better soon (doctor said it would but I haven't noticed much difference yet).

[health nut]

It can actually take up to 12 months for this lab to normalize- and even then it's not a perfect indicator of gluten intake as other things can affect it as well. I just had my 6 month labs done and it went from 120 to 5, but my GI clinic says anything above 4 is abnormal, so I was a little high for their standards. But it has gone waaay down so they were happy with it, and they are just going to check it again in a few months to see if it normalizes. You may want to see if they would be willing to check yours again in another 3-6 months. I wouldn't be too worried since it sounds like you are doing a good job being careful, and since your ttg was so high to begin with (like mine)it might just need more time.

[sa1937]

When I was 9 months gluten-free, my tTG was 10 with >8 being positive. But my EMA was negative (was positive at diagnosis) and IGG was negative as well. I was rather bummed since I also live alone and am very careful. My GI explained that we don't know what the original >100 really was as the lab didn't specify....398 or 1,000??? He wasn't at all concerned about it so I shouldn't be either.

I will be having follow-up testing done before he sees me again in April at which point I'll be gluten-free for two years so I'm hoping it's in the negative range. I really don't know if it ever goes down to zero.

[brendygirl]

Other hidden areas: kissing your loved one! Using the same toothpaste as gluten-eaters. Using the similar looking drinking glasses as gluten-eaters---you may accidentally drink from the wrong glass. Using your toothbrush AFTER you get glutened by accident. Touching salt and pepper shakers or other contaminated stuff at restaurants.

When I am around "newbies" at my dinner group, I notice lots of us "old pros" wincing at stuff the newbies are unaware of. Some Dr. with a column in the newspaper stated it takes 3 years to get a full handle on the gluten free diet. Be patient with yourself.

[Gemini]

I live by myself so no issues with anyone consuming gluten in my house. I have looked at gluten in everything as you mentioned (hair conditioners, shampoo, anything I put on my face, etc.). What kind of freaks me out is if I could be getting some kind of cross contamination from some processed thing where I can't find information from the company admitting their could be cross contamination. Sorry to hear you have bone damage too (I have osteopenia). I'm sure this disease is what zapped my memory too. I used to remember everything and now I can't remember anything. I'm hoping that starts getting better soon (doctor said it would but I haven't noticed much difference yet).

I wouldn't worry at all about your numbers...they are rarely in the normal range after 6 months. I was re-tested at 1 year and they were good then but my tTg was still in the high normal range , due to other autoimmune conditions. You are doing fine so don't worry that you are being cross contaminated. If the numbers were still high after a year or year and a half, then you might want to re-think what you are doing.

Relax and don't let your doctor tell you this is not normal.

[Newbee]

Thanks for everyone's responses! Although I do find it disturbing that it could take more than a year to really get the blood tests normal. Gemini - you mentioned the ttg was high for you at one year due to other autoimmune conditions. I didn't know it worked like that. I've kind of wondered if I could have other autoimmune issues. What other autoimmune diseases could cause this to be raised? Sounds like maybe something I should ask the doctor about. They never tested me for anything except celiac disease.

[healinginprogress]

Thanks for everyone's responses! Although I do find it disturbing that it could take more than a year to really get the blood tests normal. Gemini - you mentioned the ttg was high for you at one year due to other autoimmune conditions. I didn't know it worked like that. I've kind of wondered if I could have other autoimmune issues. What other autoimmune diseases could cause this to be raised? Sounds like maybe something I should ask the doctor about. They never tested me for anything except celiac disease.

I'd like to know this answer, too. My TTG is still over 200 after a year. I asked my doctor for an IgA AND IgG, but at the lab, they just did the TTG (IgA). I want to ask about other autoimmune disorders, too, but would like to have some more info before I go back to him....since we have to do this on our own, it seems.

[Newbee]

I'd like to know this answer, too. My TTG is still over 200 after a year. I asked my doctor for an IgA AND IgG, but at the lab, they just did the TTG (IgA). I want to ask about other autoimmune disorders, too, but would like to have some more info before I go back to him....since we have to do this on our own, it seems.

Healinginprogress, has your TTG gone down at all in a year? What was your original score?

[healinginprogress]

Healinginprogress, has your TTG gone down at all in a year? What was your original score?

My original score was >200...they stop counting at 200. I have had two tests since then, and both have been >200, still. So, I guess, in reality, it could have gone down, since I have no idea the actual starting value...300, 400. Whatever it is, it is still reading over 200, which is why I think maybe other autoimmune disorders could be involved. Especially since I'm still not feeling 100%. I did have some of my bowel removed 11 weeks ago, so it's hard to know what symptoms are from what.

[Newbee]

My original score was >200...they stop counting at 200. I have had two tests since then, and both have been >200, still. So, I guess, in reality, it could have gone down, since I have no idea the actual starting value...300, 400. Whatever it is, it is still reading over 200, which is why I think maybe other autoimmune disorders could be involved. Especially since I'm still not feeling 100%. I did have some of my bowel removed 11 weeks ago, so it's hard to know what symptoms are from what.

Why did they remove some of your bowel? I guess at least the numbers are going down but frustrating not to know from where.

[Gemini]

Thanks for everyone's responses! Although I do find it disturbing that it could take more than a year to really get the blood tests normal. Gemini - you mentioned the ttg was high for you at one year due to other autoimmune conditions. I didn't know it worked like that. I've kind of wondered if I could have other autoimmune issues. What other autoimmune diseases could cause this to be raised? Sounds like maybe something I should ask the doctor about. They never tested me for anything except celiac disease.

Hi Newbee....here's a little primer on re-testing.....The 3 tests a doctor should always do for repeat Celiac testing are the IgA/tTg and AGA IgA/

AGA IgG or the Demeadiated Gliadin Protein, which is the newer, more precise test replacing the AGA testing. The tTg is a measure of intestinal damage and higher numbers do not always mean more damage. Kind of funny but that's how it can work. The AGA testing is for dietary compliance so if you fail this test, there's a very good chance that you are ingesting gluten somewhere. The AGA tests should normalize fairly quickly, once you get the gluten out of your diet but the tTg can take a long time to get back into the great range, due to different healing rates.

tTg can also be elevated due to other autoimmune conditions, like Hashi's thyroid disease, liver disease, Type 1 diabetes....to name a few. So, if your doctor runs the tTg and it's still elevated but neglects to run the other ones for dietary compliance, you have no idea what's keeping that number up.

If the AGA testing is good yet the tTg is still elevated, then you are most likely NOT ingesting gluten and may have other AI problems developing OR you had major damage and it will take awhile for that to normalize. I have a total of 4 AI diseases and it took nearly 3 years after diagnosis to get that into the range I would accept. It got stuck in the high normal range and that wasn't good enough for me. I wanted low normal. It was my thyroid that was keeping it higher but that has gotten a lot better the longer I am gluten-free.

So, my AGA (dietary compliance) numbers came down to good normal but the tTg took another 2 years to resolve completely. It really can take that long to heal. Mine were in the normal range but not low enough for me.

I would suggest a thyroid panel...a full thyroid panel, just to see if that is functioning well. I wouldn't get all worried that you are ready to pop with something else, either! Americans are used to being handed a pill so you are all better in 48 hours. That is not reality. The body, when healing on it's own, will take much longer, even if you think you feel good.

I hate when they give a > number for the tTg! You need to know the exact number for reasons like these. The lab I used did that for anything over 100 so my tTg could have been 500 at diagnosis, for all I know. Stupid! Makes it harder to know if you are healing in a timely manner.