Positive Biopsy Followed By Negative Blood Work

[JodyM75]

My GI diagnosed me with celiac after my EGD the beginning of April, which showed "mild celiac" in a biopsy.  (Yes, I know you either have it or you don't, but those are the words they used when they told me - I'm assuming that means "mild damage").

 

Blood work just came back today as normal.  This is what they told me when I called:

 

IGG:  3  (she said anything under 20 was considered normal)

IGA:  7  (same as above, under 20 was normal)

IGM: antibodies not detected

 

-How common are false negatives?

-I was gluten free for about 4 weeks prior to the blood being drawn.  When I asked my GI, he said no, don't start eating gluten again before the test.  Thoughts?

-What are my next steps?

 

Any other thoughts would be helpful.  Also, I don't present with the obvious and debilitating symptoms many of you have so I can't really tell if a gluten-free diet is helping.  The most I can say is my pressing fatigue has cleared up.

 

Thank you all so much!

[cyclinglady]

My initial blood work was barely positive and my only symptom was anemia (went to GI for routine colonoscopy and he suspected celiac disease) but my biopsy showed Marsh Stage IIIB moderate to severe-damage. I have not gone back for another blood test since I was barely positive on it, I am no longer anemic, and my husband is gluten-free, so I am very sure I am diet compliant. Also, I should say that anemia was my only symptom, but between my blood test and biopsy (7 weeks), I consumed enough bread that brought intestinal symptoms (e.g. Rock feeling in stomach, etc.) and I get those symptoms when i get glutened eating out.

Why no blood test prior to the endoscopy? I would think insurance would require it.

Looks like you were just at the beginning stages of celiac disease and four weeks of the diet brought your antibodies down. Good job!

Let's see what the others have to say.

[CajunChic]

Look at your pathology report and read what type of damage was seen, (increased IELs, villi blunting, scalloping, was the structure normal, crypt ratios, etc.)

Mine was only increased IELs (Marsh 1) and negative bloodwork, still got a celiac dx.

False negatives happen all the time, especially if you're catching the disease in the beginning. That's what my GI told me about having negative bloodwork. He said I had seronegative celiac.

Everyone has different symptoms, keep going gluten-free and see how you feel a couple months from now. Some people don't have any symptoms but are damaging their bodies.

Good luck!

[JodyM75]

Cycle:  It was a fluke.  I have a hiatal hernia and just switched GIs in January after I found out my previous GI diagnosed me with Barretts on sight only, no biopsy.  I had been researching wheat and it's relationship with thyroid problems (which run in the family) and stumbled on some things that related celiac to gastroparesis, which my new GI also diagnosed me with in January.  So I was sitting on the gurney waiting to go in for my EGD in April and asked the doc if he was going to do a biopsy for celiac in addition to the Barretts.  He initially said no because I didn't have a medical history, but then saw the gastroparesis DX and said he would do it.  We both said afterward: SO glad we did that! 

 

LMC: I don't have it with me, but it did say something about villi blunting that corresponds with celiac. And I don't have Barretts (yay!). I'll have to take another look to see the exact wording.

 

I have a gut feeling (haha) that I was lucky and caught this early.  Very, very lucky. 

[thepeach80]

See a new GI. I'm in the process now of getting a second opinion on my scope from last year. I was told there was damage but it was inconclusive. tTG of 4 in January and 5 in June. 

[JodyM75]

This was my second opinion, with a much better GI than I had before who just looked around and gave me erroneous DXs.  The biopsy showed villious atrophy, the blood tests (apparently) show nothing.  Not sure why I need a second third opinon.  So far, everything he's said and done has been dead on. 

[CajunChic]

Lol!!! I feel the same way! I thank God I found it before I suffered what other celiacs have suffered without the correct dx. Now on to better days : )

[nvsmom]

Blood work just came back today as normal.  This is what they told me when I called:

 

IGG:  3  (she said anything under 20 was considered normal)

IGA:  7  (same as above, under 20 was normal)

IGM: antibodies not detected

 

-How common are false negatives?

-I was gluten free for about 4 weeks prior to the blood being drawn.  When I asked my GI, he said no, don't start eating gluten again before the test.  Thoughts?

-What are my next steps?

 

Those may not be  celiac tests that you have listed there. The Immunoglobulin A, G, and M (IgA, IgG, IgM) are just measurements of the immune response in different area of the body. The IgA is made in the mucosal linings of the body (mouth, intestines, etc) and is deficient in 1/20 celiacs. IgG is the most common immunoglobulin found in all bodily fluids; it fights viruses and bacteria. The IgM is in the lymphatic system and is a first line of defense against infection.

 

Celiac tests are:

tTG IgA and tTG IgG

DGP IgA and DGP IgG (newest tests)

EMA IgA

AGA IgA and AGA IgG (older and less accurate tests)

 

Your tests could be a tTG based tests as they often have reference ranges of 0-20, but I have never ever seen a tTG IgM test before - you might want to double check with the doctor that the correct tests were done.

 

If you need to re-test, you will need 8-12 weeks of 1-2 slices of bread per day to be accurate if you have gluten-free for quite a while.  If you have only been gluten-free for a month, you may not need the full gluten challenge, but there is no way to know for sure. Your GI was wrong, you should have been eating gluten for testing.  

 

You could always try testing ASAP. Sometimes autoantibodies linger for months before dropping - the tTG tests are the worst for that. Try testing now, and then again after a gluten challenge if you wish.

 

This report discusses the validity of the tests; page 12 has an easy to read chart: Open Original Shared Link

 

I'm glad that you were not feeling too poorly, but an improvement of any sort would point to celiac disease.  I hope you continue to feel better on the gluten-free diet!  

[JodyM75]

I called them back and they said they run the anti-gliadin, tTG, and anti-endomysial tests.  All my numbers were within normal ranges.

 

I'm still going to go with the biopsy results and just assume at this point that I caught it early.  I may do a gluten challenge at some point in the future to see what happens, but not any time soon. 

[nvsmom]

I called them back and they said they run the anti-gliadin, tTG, and anti-endomysial tests.  All my numbers were within normal ranges.

 

I'm still going to go with the biopsy results and just assume at this point that I caught it early.  I may do a gluten challenge at some point in the future to see what happens, but not any time soon. 

 

That's definitely the safe, and smart, way to go. Good luck with the diet!