What Is The "gold Standard" These Days? I'm Confused!

[Kbmekb]

This is such a fantastic resource, thank you! I'm hoping someone can make some sense out of my current situation!

OK, so my symptoms are SO consistent with celiac, however it wasn't on my radar at all until my GI finally had me go through an upper endoscopy and colonoscopy a few weeks ago to help figure out what was going on. Biopsy results came back as follows:

"Duodenal mucosa, with focal mild partial villous atrophy (effacement), mild crypt hyperplasia and moderate to marked increase in intraepithelial lymphocytes consistent with celiac disease (in the appropriate setting)."

When these results came back, I got a call from his office saying that I had a positive celiac biopsy, but that I had go get blood work done and follow up with him in a few weeks. I had the blood work done, and got the call a few days ago that all of my blood work came back "normal". The person on the phone said "your blood work is normal, you don't have celiac, but follow up with the doctor as scheduled".

My appointment is next week, so I'm very curious to hear what my doctor has to say, but I'm just curious based on all I've read out there... Would normal blood work really rule out celiac completely if the biopsy was positive? Should I be getting a second opinion from a celiac specialist?

[mushroom]

Hello, and welcome.

You are not the first and won't be the last to have conflicting results between blood and biopsy, and it oftentimes happens the other way around too. The biopsy is considered to be the "gold standard" of celiac diagnosis; in fact it used to be the only test until they devised the blood testing for gliadin antibodies. So biopsy usually trumps blood work. If you have symptoms consistent with celiac and a positive biopsy, which you do, I would consider myself to be celiac.

You really need to get a copy of the your celiac blood test results to see what tests were run. Sometimes they leave some out, and the most important one that is often missed is the Total Serum IgA. This test is run as a control to see if you are a normal antibody producer since most of the tests run are IgA tests. If you produce below normal levels of IgA, then your IgA results are invalid and they need to run the IgG versions of those tests. Also, some doctors run only the TtG (anti Tissue Transglutaminase) test, when there are more up to date tests available (EMA - endomysial antibodies) and DGP (Deamidated Gliadin Peptide). However, even if all your testing was done properly, I think you can fairly safely assume that the testing was a false negative (about 20% are). I would start the gluten free diet right away, and follow up with your regular GI and report to him how you are doing at that time. I would be surprised if you were not feeling heaps better. But in the meantime, do get copies of your test results - you really should have them for your records anyway.

[Lisa]

Yup, I am in agreement with Mushroom...biopsy trumps blood work (unless you are an alcoholic, anorexic, malnourished, have gastric infections, soy intolerance and/or dairy intolerance)

But pretty sure you're a new member of the Club! Welcome! Doctors and Staff just need to read up on the newest research...or we can just inform them!

[MsCurious]

Yup, I am in agreement with Mushroom...biopsy trumps blood work (unless you are an alcoholic, anorexic, malnourished, have gastric infections, soy intolerance and/or dairy intolerance)

But pretty sure you're a new member of the Club! Welcome! Doctors and Staff just need to read up on the newest research...or we can just inform them!

Yep, what Mushroom said! If I were you... I'd go gluten free starting... RIGHT NOW!

[Kbmekb]

Thank you all so much, I am new here, however have been on this site for weeks getting a ton of insight, so... Thanks!!!

I appreciate your info, I thought that the biopsy trumps blood work, but it's reassuring hearing from you. I will definitely get a copy of my blood work! I do have a copy of my biopsy results... On there is a note from my doctor which says "duodenal bx suggest possible gluten allergy, needs tissue transglutaminase IgA and serum IgA then office visit in 3 wks". Sounds to me like I may be in the situation where a "total" blood workup hasn't necessarily been done??? Any thoughts? I'll get a copy anyway to make sure. Either way, I'm only about 2 hours away from either the Celiac Center in Boston (Beth Isreal), or New York (Columbia), so I'm thinking it's worth it to take a ride!!!!

Thanks again so much!

[mushroom]

Thank you all so much, I am new here, however have been on this site for weeks getting a ton of insight, so... Thanks!!!

I appreciate your info, I thought that the biopsy trumps blood work, but it's reassuring hearing from you. I will definitely get a copy of my blood work! I do have a copy of my biopsy results... On there is a note from my doctor which says "duodenal bx suggest possible gluten allergy, needs tissue transglutaminase IgA and serum IgA then office visit in 3 wks". Sounds to me like I may be in the situation where a "total" blood workup hasn't necessarily been done??? Any thoughts? I'll get a copy anyway to make sure. Either way, I'm only about 2 hours away from either the Celiac Center in Boston (Beth Isreal), or New York (Columbia), so I'm thinking it's worth it to take a ride!!!!

Thanks again so much!

Yes, the full panel was not run. Doctors have been taught they only need to do the TtG - but he did do the total serum IgA to make sure you produce normal antibodies. I think your idea of going to a celiac center is a good one. They will surely order the rest of the tests (EMA and DGP)