Should I get a second opinion?

[shell504]

My test results should be attached. Please tell me if they are not. 

My doctor recently told me I have celiac. The only symptom i have had was loose stool for a few months. However, I should mention that my diet was horrible. I have since started incorporating more fiber and it seems to be evening out. 

I told her about everything and she suggested a panel, which I did. Now she's telling me the tests is conclusive with having celiac, but even on the results itself, it says that it is not. She is also suggesting a colonoscopy to see if there are any other issues going on. But shouldn't she want to do an endoscopy first to confirm the celiac? I'm so confused. I hate questioning a medical profesional but wanted opnions on if I should maybe just see a GI dr or get another opinion from just a different dr in general? 

[shell504]

I apologize i can't figure out how to get the picture on here. 

Results were:

IGA 401mg/dl

Deamidated Gliadin IGG. <1.0

Deamidated Gliadin IGA. <1.0

Tissue Transglutaminase IGA AB. <1.0

Endomysial IGA. Negative. 

Is she just going based off of the IGA alone? And because that is elevated, it's positive? The test states: "Results do not support a diagnosis of celiac disease." 

[trents]

Welcome to the forum, @shell504!

The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy.

Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs.

Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 

Edited April 11, 2025 by trents

[shell504]

Hello. I apologize. I didn't know there wasn't a standard. 

The standard listed  for the IGA is normal range 47-310. 

The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected. 

And the negative one the standard is negative. 

It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 

[trents]

I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you.

Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.