Question of test results

[zigybean]

I know I am Celiac.   My test numbers and biopsy confirm it, but can I get some insights on what these test numbers really mean?  I am too new to know much yet. 

Are really bad test results to these tests an indication of having the disease undetected longer?  With worse numbers, does it take longer to heal?

For example, my Gliadin Ab IgA reported back as >2367.3 CU with the standard range as 0.0 - 19.9 CU

My Gliadin Ab IgG was 139.7 with the standard range as 0.0 - 19.9 CU

and my issue Transglutaminase IgA was >4965.5 CU with the standard range as 0.0 - 19.9 CU.

The engineer in me sees those results and thinks I pegged two of the three of the tests.  Meaning I went past the detectable upper limit the test can determine. 

Do the numbers really matter to the intensity of damage to the body that has already, meaning I really really ticked of my immune system. Or is it just a number and any positive interprets as the same thing.  Like 35 is bad(strong positive for diagnosis), but 3000 is not worse it is still just a positive.

 

I don't know if my question makes sense...    

Any takers?

[cyclinglady]

Dang!  Those numbers are high.  My lab does not report numbers higher than 100.  So, I have no idea how high mine actually have been.

When diagnosed, I only had a positive on the DGP IgA which was either a 60 or an 80.  My GI called me “mildly positive” at the time.  My intestinal biopsies revealed a Marsh Stage IIIB which is moderate to severe damage.  Fast forward five years and I was having problems.  I am pretty sure I got gluten into my diet somehow (suspect an antibiotic, but have no proof).  My antibodies (only the DGP IgA and never the rest of the panel which is odd) were off the chart (over 100) and I could not get them under 100.  I was also experiencing some GERD.  So, a year after my glutening, I had a repeat biopsy.  My small intestine was healed despite my DGP IgA still elevated.  The bad news was I have autoimmune gastritis (biopsy confirmed). That last glutening (I also struggled with a tooth infection, flu and a cold all in one month), triggered autoimmune hives for six months besides my usual “can not digest even gluten-free foods without  pain” glutening symptoms.  My allergist checked my thyroid antibodies and those were off the charts too.  So, my allergist and GI think that all this falls under hypersensitivity which involves 4 types and many things went wacky for me during that year.  

From what I have researched, the level of antibodies do not always correlate with organ damage.  In the case of celiac disease, it is the reason why the gold standard is still intestinal antibodies.  Antibodies are not even a good indicator of dietary compliance, but it is the “only tool in the toolbox” that is non-evasive.  

How were your biopsies?  

Healing varies for so many reasons (e.g. damage, dietary compliance, other systemic damage like fractures), so it is hard to say how fast you will heal.  Avoid processed foods and eating out will help you avoid gluten and may help you heal faster.  Each gluten exposure is a set back that can last for days or months.  

Edited December 20, 2018 by cyclinglady

[zigybean]

I have not been back to see my GI yet from my endoscopy, so I don't know anything about the severity of the damage yet.  With the date of the scoping and the Christmas and New Years holidays coming up, the first appointment I could get was Jan 3rd.  All I know is that the results of the biopsy caused him to request lab work.

Thanks for the insight.  I am trying to figure out this disease enough that I can ask intelligent questions. 

And of course I have adopted a gluten free diet.  That is going to tougher because my children (16 and 19) are not wanting to go strictly gluten free.  We eliminated flour and most of the carbs from the house, but they still have a gluten cabinet and dedicated counter space/pans/dish brush.  This disease seems more difficult to navigate than type 1 diabetes.

 

 

 

[RMJ]

The documentation submitted to the FDA to get celiac antibody tests approved does not try to correlate positive antibody levels and degree of damage.  Some manufacturers do have both weak positive and positive ranges, but when I looked at information on the FDA website a weak positive appeared to just mean it was near the cutoff, not any correlation to villi damage.  Some degree of linearity is expected for the tests, so if you are retested by the same lab and numbers go down significantly that would mean lower antibody levels.  

[frieze]

since celiac is genetic, your children should be tested, ASAP