Now What? Input Greatly Appreciated.

[Maxipoo]

Noted on the board previously, I have had some digestive and neurological issues. This led to a Celiac panel at the end of March after I had a biopsy showing small intestine damage. I was off of gluten three weeks leading up to it. Three measures were out of range. The gastroenterologist wanted to do one more panel to confirm Celiac Disease. As suggested by the board, I ate plenty of gluten daily. I just received an email that the test results were in (see below for number comparisons). The numbers are lower than before, with only Gliadin Peptide IgG showing high this time. I will try to call the gastroenterologist tomorrow. I am trying to process this all and am a bit discombobulated. Also noted previously, the gastroenterologist was very hesitant to label me with Celiac. I have some anxiety about the call. Thanks to anyone who can provide me with some objective input.

FIRST TEST 3/31

Gliadin Peptide - Ab.IgA / 15 (positive 20+)

Gliadin Peptide - Ab.IgG / 37 (positive 20+)

Tissue Transglutaminase Ab.IgA / 4 (positive 4+)

Tissue Transglutaminase Ab.IgG / 2 (positive 6+)

Endomysium Ab.IgA / 389 (positive 387+)

SECOND TEST 5/11

Gliadin Peptide - Ab.IgA / 13 (positive 20+)

Gliadin Peptide - Ab.IgG / 24 (positive 20+)

Tissue Transglutaminase Ab.IgA / 2 (positive 4+)

Tissue Transglutaminase Ab.IgG / 2 (positive 6+)

Endomysium Ab.IgA / 363 (positive 387+)

 

 

 

 

[Maxipoo]

Follow up... Gastroenterologist’s office called earlier before I had a chance to proactively call them. The nurse said the doctor asked if I had any gluten since the last test. He assumed I had not and my numbers were normalizing. I told her I had it everyday and figured my numbers would go up and am confused as to why they went down (let her know I accessed them via the lab company when an email notified me the results were in last night). She was surprise I had been consuming gluten and the numbers went down. She said she would notify the doctor. I asked her to please have him call me. Still would love any board input I could get. Thanks.

[Scott Adams]

The gold standard for diagnosing celiac disease is still the biopsy results, so if you had positive results this is a pretty strong indicator that you likely have it. If you had a positive biopsy AND a positive blood test, then it's even more likely, especially given your symptoms. 

In the end, since it seems you are reluctant to have such a diagnosis, probably the only other options would be 1) get a genetic test; 2) try the gluten-free diet for a few months and see if it helps your symptoms.

You could also have non-celiac gluten sensitivity, which ~10x more people have than celiac disease, but there isn't a formal test for this yet.

[Maxipoo]

4 hours ago, Scott Adams said:

The gold standard for diagnosing celiac disease is still the biopsy results, so if you had positive results this is a pretty strong indicator that you likely have it. If you had a positive biopsy AND a positive blood test, then it's even more likely, especially given your symptoms. 

In the end, since it seems you are reluctant to have such a diagnosis, probably the only other options would be 1) get a genetic test; 2) try the gluten-free diet for a few months and see if it helps your symptoms.

You could also have non-celiac gluten sensitivity, which ~10x more people have than celiac disease, but there isn't a formal test for this yet.

Thank you so much for the reply. I always appreciate when you post. The dip in numbers certainly threw me off. So, the IgG still positive basically means nothing? The nurse called me back and said the doctor said I definitely do NOT have celiac disease. I asked about the biopsy and what could have made the numbers change. Also asked where to go from here. She sighed and said she would ask him. Have not heard back. Second opinion from a different gastroenterologist? Third test from a lab on my own? Can I just go to PCP and ask for genetic test? I have an appointment with her Monday. 

[Scott Adams]

What were your total IgA Levels? This is always checked to determine the accuracy of the other tests.

I see several high tests, and several positive blood tests here:

FIRST TEST 3/31

• Gliadin Peptide - Ab.IgA / 15 (positive 20+)
• Gliadin Peptide - Ab.IgG / 37 (positive 20+)
• Tissue Transglutaminase Ab.IgA / 4 (positive 4+) - This is a high reading, borderline positive if 4+ is positive - The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease.
• Tissue Transglutaminase Ab.IgG / 2 (positive 6+)
• Endomysium Ab.IgA / 389 (positive 387+) - POSITIVE! highly accurate test for celiac disease, with a sensitivity of approximately 98-100% and a specificity of nearly 100%. The test requires specialized expertise to perform and interpret, and it is more expensive than other blood tests, and is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of this test is approximately 50-90%. This means that the test may produce a false negative result in some people with celiac disease who do not have elevated levels of IgG antibodies to tissue transglutaminase, and the specificity (its ability to correctly identify people without celiac disease) is approximately 70-90%.

SECOND TEST 5/11

• Gliadin Peptide - Ab.IgA / 13 (positive 20+)
• Gliadin Peptide - Ab.IgG / 24 (positive 20+) - Some studies have suggested that the Gliadin Peptide Antibody IgG test has a relatively high false positive rate, meaning that it may produce positive results in people who do not actually have celiac disease or gluten sensitivity. Additionally, the test may miss cases of celiac disease, particularly in people who have mild or atypical symptoms. Overall, the Gliadin Peptide Antibody IgG test may be useful as a screening tool for celiac disease or gluten sensitivity, but a positive result would generally need to be confirmed with additional testing, such as the DPG test or a biopsy of the small intestine.
• Tissue Transglutaminase Ab.IgA / 2 (positive 4+)
• Tissue Transglutaminase Ab.IgG / 2 (positive 6+)
• Endomysium Ab.IgA / 363 (positive 387+) - This is a high reading, and borderline positive if 387+ is positive

With these results, plus a biopsy showing small intestinal damage (exactly what did the results say?), it seems highly unlikely that you do not have celiac disease, and I have no idea why your doctors would tell you otherwise.

 

 

PS - Were you told to eat a minimum of 2 slices of wheat bread per day for 6-8 weeks before these blood panels? That is the standard protocol, and if you were eating less than that leading up to these tests it will affect the results.