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sddave

Normal to do just biopsy and IgA test?

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My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

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Not sure, but the biopsy is the definitive end all be all sign you've got it.

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1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

I would agree that you may have Celiac because your tTg is slightly elevated and your Gliadin Peptide is very elevated....which means you are producing antibodies to the gluten in your diet.  Yes, there is another test called the EMA that is usually not done without other positives (which you have) because it is an expensive test that has to be done by hand.  This is why many GI's do not order one right away or at all.

As far as the biopsy being the Gold Standard....it isn't, because if you have patchy damage or damage that is just in the beginning stages, they may miss it and then tell you you don't have Celiac, when you do.  Many doctors do not diagnose Celiac without extensive damage so even the biopsy may not give you the answers you need. This is why diagnosing Celiac can be so frustrating.

I would ask for the EMA test as you already have 2 other positives on your incomplete panel. If that is positive, then coupled with a positive tTg, that is a slam dunk for Celiac without the biopsy. You could also ask for gene testing, to see if you have the genetics to trigger for it.  If the EMA is negative, then a biopsy would be the next step.

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1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

With a gliadin result that high yes you are celiac.  If your doctor is doing a biopsy keep eating gluten until that is done. If your doctor feels a biopsy isn't needed or you have chosen not to have one you can start the diet. Welcome to the club you never wanted to join and I hope you are feeling much better soon.

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1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

I do not understand.  You had a biopsy that showed intestinal damage (based on earlier postings this week):

"So I was told my gluten antibody blood test came back positive.  The second time my biopsy was tested it came back positive a couple weeks ago.   I have a followup visit with my GI doc. this week."

 Since villi damage can be caused by many things, your GI then ordered  celiac blood tests which were strongly positive.  Your total IgA was normal, so that validates the celiac IgA antibodies test.  When dealing with celiac disease, it is used as a control test.  

What are you questioning?  The pathologist could not definitively give a celiac disease diagnosis without the celiac disease antibodies tests.  That is why he could not commit.  

Listen to your GI.  he has the complete story (lab results and test).  

This is a hard thing to absorb.  Grieving is normal.  Denial is a part of grieving.  I am sorry, but the good news is this is one Autoimmune disorder that can be managed.  

Edited by cyclinglady

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Maybe I wasn't clear.   Long story, but my biopsy was done first, and gluten antibody blood test done second.   I know that backwards but I thought my stomach issues were an ulcer because my symptoms were very bad when I was extremely stressed over the health of a family member.  My GI doc. reported a slightly flattened intestine from endoscopy.   One a followup visit two doctors attended.  The doc who did the endoscopy said at the followup I had IBS.   I asked what about the flattened intestine.   He looked at the computer screen.   I guess at biopsy report and decided to have another pathologist look at my biopsy.  The other younger doctor at my visit called and said he talked to the pathologist and said I "may" be celiac from a second test.  That was on a Friday.   The following Monday the other GI doc who did the endoscopy called and left a message and said I did have celiac disease, to go gluten-free and go ahead and take the gluten antibody blood test.   These results I posted were from my gluten antibody blood test.  They said the blood test was positive for celiac disease.    I've accepted I celiac but would hate to be mis-diagnosed.   My doctor's haven't given me a lot of confidence in them.

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Ah, I can completely understand.  I am not a doctor, but your antibody results are high.  I would insist on getting a copy of the pathologist's report just for the record.    It sounds like the first GI was not looking for celiac disease initially.   You werelucky he took any tissue samples at all.  Luckily, he ordered the antibodies test too after being caught messing up.     I can tell you that on my visual (endoscopy) everything looked good per my GI. Iit was the pathologist's report that confirmed my diagnosis and I just had one positive on the celiac panel (you have two!).  

Sounds like your first GI goofed, but was able to save face and recover.  

With all your records on hand, you can always get another opinion for piece of mind.  Or just go gluten free.  In a few months, see if your antibodies drop and if your symptoms start to resolve (and I bet they will!!!)

Good thing you were on top of it!  Congrats!  

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