Ttg Levels Gone Down While Eating More Gluten!

[Meg123]

Has anyone ever had their levels go down while eating gluten?

I recently had a biopsy which was negative. I was eating increased gluten during the 8 weeks leading up to my biopsy, but I just got the results back from the final 'base blood test' I requested. I wasnted one final blood test before going gluten free, so I could compare it in 8 months time after being strict gluten free. (I got the idea from here )

But my level of Ttg has gone down from 26 on a light gluten containing diet down to only 7 after two months of heavy gluten.

My GP still wants me to stay gluten free for a few months to see if my iron levels go up. He's thinking maybe it's gluten intolerance causing the malabsorption....

But gluten intolerance would not cause raised auto immune antibodies would it?

So I guess the initial raised Ttg must not be gluten related at all.... Luckily I did get this base blood test, or I would have assumed in 8 months time that my negatie blood test was due to being gluten free.

Also, I've only been gluten free for 6 days and my head is clearer, and belly a bit less bloated.

Any thoughts?

[cassP]

my ttg was only an 8 at first test, and after 2 weeks on gluten challenge- it went down to a 7.

did u have the other antibodies tested??? antigliadin? Endomysial Antibody??

actually, if you had a positive on that first TTG- they should know to then check the Endomysial Antibody-

celiac tests are funny- like not always accurate- u really have to listen to your body- and besides your first ttg was positive enough. and YES gluten intolerance can cause malabsorption- & several deficiencies including IRON.

ALSO- being Hypothyroid can cause you to have Low stomach acid, and also to have LOw iron-

thyroid conditions are pretty common in those who are gluten intolerant.

[sb2178]

So, there was this one study were they took blood from confirmed celiac (biopsy-positive, previously sero-positive) patients and sent it to different labs. Most labs sent back about 20% of them as negative. One lab actually sent back 50% of them as negative.

We treat negative blood results with some skepticism for a reason.

[Jestgar]

So, there was this one study were they took blood from confirmed celiac (biopsy-positive, previously sero-positive) patients and sent it to different labs. Most labs sent back about 20% of them as negative. One lab actually sent back 50% of them as negative.

We treat negative blood results with some skepticism for a reason.

Do you have a ref for this? It would be nice to point people towards...

[sb2178]

No, darn it, I never figured I would be sharing my screwy blood test issues initiated research.

I found it through either google scholar or pub med though... and I'm pretty good about evaluating the presence of peer review and basic methodology.

[sb2178]

Okay, quick review led to this, which is not that article but is somewhat similar... I'm too sleepy to actually go get an ID to access the full article, but the abstract is in the same ball park.

Utility in Clinical Practice of Immunoglobulin A Anti-Tissue Transglutaminase Antibody for the Diagnosis of Celiac Disease

Abrams, JA et al

Clinical Gastroenterology and Hepatology

Volume 4, Issue 6 , Pages 726-730, June 2006

I'd bet lunch that it cites the article I found last year.

[Meg123]

my ttg was only an 8 at first test, and after 2 weeks on gluten challenge- it went down to a 7.

did u have the other antibodies tested??? antigliadin? Endomysial Antibody??

actually, if you had a positive on that first TTG- they should know to then check the Endomysial Antibody-

celiac tests are funny- like not always accurate- u really have to listen to your body- and besides your first ttg was positive enough. and YES gluten intolerance can cause malabsorption- & several deficiencies including IRON.

ALSO- being Hypothyroid can cause you to have Low stomach acid, and also to have LOw iron-

thyroid conditions are pretty common in those who are gluten intolerant.

my bold,I was negative for everything else they tested, but I don't think any of my tests have included endomysial antibody. I've had antigliadin though and always comes back fine.

I'm taking note of how I feel, and so far I just feel clearer and brighter, and less bloated. Still have sore joints and fatigue though, will see if being gluten free effects my iron levels in time.

How long do you think it would take to make a positive difference to iron levels IF gluten was the cause?

[October3]

Well, i have no helpful words of wisdom but we are in the same boat. My son's levels went from 48 (0-19.9 is normal) to 22 with no change in diet at all. Then down to 14 on an 8 week gluten-free diet. So did the drop from 22 to the normal range at 14 have to do with diet, or was it dropping anyway and the diet had nothing to do with it? Interesting about the different labs having different values. But in our case it was the same lab each time. I wonder what the intralab reliability is.

[Meg123]

Well, i have no helpful words of wisdom but we are in the same boat. My son's levels went from 48 (0-19.9 is normal) to 22 with no change in diet at all. Then down to 14 on an 8 week gluten-free diet. So did the drop from 22 to the normal range at 14 have to do with diet, or was it dropping anyway and the diet had nothing to do with it? Interesting about the different labs having different values. But in our case it was the same lab each time. I wonder what the intralab reliability is.

Thanks for posting this though. At least it's not just me. I don't know what to think though .

[Skylark]

Okay, quick review led to this, which is not that article but is somewhat similar... I'm too sleepy to actually go get an ID to access the full article, but the abstract is in the same ball park.

Utility in Clinical Practice of Immunoglobulin A Anti-Tissue Transglutaminase Antibody for the Diagnosis of Celiac Disease

Abrams, JA et al

Clinical Gastroenterology and Hepatology

Volume 4, Issue 6 , Pages 726-730, June 2006

I'd bet lunch that it cites the article I found last year.

Don't you hate those late-night reference requests? Jestgar beat me to it. I'm building up quite an article library on CiteULike now.

The study you posted is interesting for sure. I haven't found a second test-retest study but this one is a mind-blower. "Hemolysis interferes with the detection of anti-tissue transglutaminase antibodies in celiac disease."

Open Original Shared Link

Open Original Shared Link - full text

Hemolysis is rather common in blood samples and labs aren't good about getting the patient back for another blood draw. This could explain an odd TTG result. It also partly explains the false negative rate.

[Meg123]

what is homolysis?

My tTG has been tested four times in total.

1st time was about 20 months ago and it was borderline then

then two months ago it was raised at 25

then three weeks later on a higher gluten containing diet went up to 26

then last week after about 8 weeks of tonnes of gluten it went down to 7!!!

I feel really stupid exploring the celiac route now. a I didn't have the two common genes b levels in blood weren't that high to begin with c negative biopsy. All the stats say 'highly unlikely' for all of this. But of course, I know from reading in here that it's still possible.

Lots of my symptoms could be put down to celiac, plus the constantly anaemic even when taking supplements thing..... I'm a bit lost again. But am continuing with the diet, but I'm finding it really hard to keep the motivation when preparing all the gluten food for my family and not seeing the result in my recent blood test. I was so shocked when it came back negative, I really expected it to be a lot higher than my last 26

[October3]

Yup. That's how I feel. And if it were me I wouldn't feel so bad about it, but forcing my kid to adhere to a diet when he doesn't seem to feel any better either way (he doesn't realy feel bad at all) and the blood work seems so random just is hard to be motivated for.

[Skylark]

Hemolysis is when blood cells break in the test tube. The plasma turns red and it can interfere with test results. It's not at all uncommon. It might be noted on your original lab slip, but that study I found is recent so nobody will know that the hemolysis is a problem.

Lab tests are NOT always reproducible or accurate. If you have a test with unexpected results, you should immediately be suspicious of the test. That's why doctors always order a repeat if you get something bad like elevated liver enzymes or low potassium before they do anything, especially if you don't have sypmptoms. I have no idea why these same doctors have so much stupid faith in celiac tests when you DO have symptoms.

[nora-n]

the article citing a study where they resarched the performance of the ttg test, about different labs not finding celiac in biopsy-proven celiacs´blood tests, was actually here on celiac.com.

(they cited the article referenced by one of the others here earlier, Open Original Shared Link

note that some of these tests only pick up 11% of celiacs (those with partial villous atrophy, the most common presentation)

[cassP]

my bold,I was negative for everything else they tested, but I don't think any of my tests have included endomysial antibody. I've had antigliadin though and always comes back fine.

I'm taking note of how I feel, and so far I just feel clearer and brighter, and less bloated. Still have sore joints and fatigue though, will see if being gluten free effects my iron levels in time.

How long do you think it would take to make a positive difference to iron levels IF gluten was the cause?

even if gluten is the sole cause for an iron deficiency-> the gluten free diet is commonly not enough to correct it. many of us have had to get shots or take supplements to help correct deficiencies like B12, D, or iron. im currently taking quite a bit of D, and Chelated Iron... and will retest soon to see if it's helped yet.

make sure u get everything tested! and checked- do your own research and asks for tests- doctors do not always think of everything.

oh, and btw- my antigliadin was a solid NEGATIVE. the only solid positive for me was my EMA.

[cassP]

what is homolysis?

My tTG has been tested four times in total.

1st time was about 20 months ago and it was borderline then

then two months ago it was raised at 25

then three weeks later on a higher gluten containing diet went up to 26

then last week after about 8 weeks of tonnes of gluten it went down to 7!!!

I feel really stupid exploring the celiac route now. a I didn't have the two common genes b levels in blood weren't that high to begin with c negative biopsy. All the stats say 'highly unlikely' for all of this. But of course, I know from reading in here that it's still possible.

Lots of my symptoms could be put down to celiac, plus the constantly anaemic even when taking supplements thing..... I'm a bit lost again. But am continuing with the diet, but I'm finding it really hard to keep the motivation when preparing all the gluten food for my family and not seeing the result in my recent blood test. I was so shocked when it came back negative, I really expected it to be a lot higher than my last 26

26 is positive enough to know that it hurts or inflames your body. your numbers are not always gonna match up to your symptoms. there are plenty of ASYMPTOMATIC Celiacs out there who probably have much higher numbers than us. plus you dont have to have a dq2 or dq8 either. hope you find your motivation!!!