tTg at 234 at 6 month bloodwork

[CeliacMom79]

Hello!

This is my first time posting, but I have been so helped by the reading other's posts over the last 6 month.

My 16 year old was diagnosed about 6 months ago with Celiac despite He had almost no symptoms aside from occasional loose stools and low weight gain. His tTg was over 250.  He also had anemia with abnormalities to his red blood cells, vD deficiency, elevated ALP and a few other nutritional findings.  He has had a couple of accidental gluten exposures in the last 6 months but overall has (as far as we know) been completely gluten free.  We scrubbed our kitchen down and replaced cookware at the time of diagnosis and our home is completely gluten-free.  We eat out only rarely and then at restaurants we know are aware of cross contamination. He is also not eating oats as a precaution until we get his numbers down. We were told by his Peds GI doc to expect normalization of his labs within 2 years.

He just had his 6 month bloodwork and his tTg is now at 234.  All of his abnormal nutritional findings, the anemia and his blood counts have normalized. His ALP is still elevated (which we think may be a normal finding as he's been having a major growth spurt and further tests to check his liver function have been normal). He no longer has loose stools, he feels great and has grown 3 inches and put on about 20lbs in the last 6 months.  This all seems positive.

I am happy that we now have his tTg at detectable levels, but I am wondering if anyone has had a level that is still this high 6 months post diagnosis?

Thank you so much!  I appreciate this community.

 

[trents]

Welcome to the forum, @CeliacMom79!

Not sure what you mean when you say you are pleased that his ttg levels are now at "detectable levels"? Earlier in your narrative you said they were originally above 250. Was 250 the upper limit of the scale that was used, such that you actually don't know how high they were originally, i.e. "off the charts"? 

Were his other liver test functions (ALT, AST) originally elevated?

[CeliacMom79]

Hi.

Sorry, his previous levels were >250 and we do not know how high they were. So yes, "off the chart". By 'detectable' I just meant that at 234 we now actually have a number as a baseline that we can measure future labs against.

All his other liver test functions have been normal.  Just the elevated ALP.

Thank you.

[trents]

Well then, I'd say he's making excellent progress. It can take some time for antibody numbers to normalize. Even though new antibodies are no longer being produced, it takes a while for the old ones to be disposed of.

Make sure you keep an eye on the alkaline phosphatase levels. It is probably true that is tied to his adolescent growth spurt but it's worth tracking. Thirteen years of elevated liver enzymes was what eventually led to my celiac disease diagnosis. But I was 50 years old by that time and it was my ALT and AST that were mildly elevated all that time, not my alk phos. I just found out last week from an ultrasound that my liver is 20% larger than normal and I'm hoping that is a legacy effect. I have more testing lined up. 

Edited July 1, 2025 by trents

[Theresa2407]

On 7/1/2025 at 1:26 PM, CeliacMom79 said:

Hello!

This is my first time posting, but I have been so helped by the reading other's posts over the last 6 month.

My 16 year old was diagnosed about 6 months ago with Celiac despite He had almost no symptoms aside from occasional loose stools and low weight gain. His tTg was over 250.  He also had anemia with abnormalities to his red blood cells, vD deficiency, elevated ALP and a few other nutritional findings.  He has had a couple of accidental gluten exposures in the last 6 months but overall has (as far as we know) been completely gluten free.  We scrubbed our kitchen down and replaced cookware at the time of diagnosis and our home is completely gluten-free.  We eat out only rarely and then at restaurants we know are aware of cross contamination. He is also not eating oats as a precaution until we get his numbers down. We were told by his Peds GI doc to expect normalization of his labs within 2 years.

He just had his 6 month bloodwork and his tTg is now at 234.  All of his abnormal nutritional findings, the anemia and his blood counts have normalized. His ALP is still elevated (which we think may be a normal finding as he's been having a major growth spurt and further tests to check his liver function have been normal). He no longer has loose stools, he feels great and has grown 3 inches and put on about 20lbs in the last 6 months.  This all seems positive.

I am happy that we now have his tTg at detectable levels, but I am wondering if anyone has had a level that is still this high 6 months post diagnosis?

Thank you so much!  I appreciate this community  .

 

It took 2 1/2 years for my levels to come down.  I don't understand your testing.  To be safe with my test I need to be <26.  When first tested my level was 272.  Maybe they are runing a different test now days.  I have a tTg IgA EMA ran yearly and it is sent to Mayo Clinic.  I have had Celiac since age 9 months and I am 76 now.  It took 50 years being sick, seizures arthritis, no Platlets, liver disease, no Vitamin D3, Anemia, Thyroid and Hashimotos, spains, boils breaking down my entire immune system. Have they ran a breathe test, SIBO test and a Fructose test?  Milk and sugar has the same effect as Celiac but doesn't damage the organs.

[trents]

@Theresa2407, different labs use different reference ranges and even different units of measurement for the same tests. Because of that, you can't compare test scores from tests administered at different labs.

 

Edited July 7, 2025 by trents

[Scott Adams]

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes: