Does my positive bloodwork warrant a biopsy?

[Apk07]

So a couple months ago I started getting really bad stomach pain, heartburn-like symptoms, chest pain, intense fatigue, and chills. Nothing really helped other than some mild relief from PPIs. It was constant and steady and very defeating feeling. I was worried about some sort of heart problem, so I went to the doctors right away.
I got full bloodwork done, an EKG, COVID tests, food allergy testing, X-Rays of my chest/torso, an abdominal ultrasound, an abdominal MRI (w/ contrast). Everything came back negative/fine other than being low on vitamin D (which has always been the case for me).

Finally after throwing everything at me, I remembered my doctor once asked if I had ever been tested for gluten sensitivity. I brought it back up, as a last resort before going to an expensive (to me) GI doctor. Lo and behold, the bloodwork tests back positive. I was pretty taken aback, having expected it to be negative like every other test.

So the results of these antibody tests are (regularly eating gluten up until this point):

• Gliadin IGG:  56.1 U/mL  (reference range is less than 15)
• Gliadin IGA:  54.7 U/mL  (reference range is less than 15)
• Endomysial IgA AB  Positive  (reference range is negative)

My doctor seemed insistent on me getting a biopsy still, from a GI doc, at my own leisure. But... she told me she has never had a patient who tested positive on these antibody tests come back with a negative biopsy. She basically said "yeah you have Celiac, but we'd like to have it 100% on paper with the biopsy at some point."

Given all the other tests and procedures I've racked up bills for, do you feel it's worth going for the biopsy, or would it be a waste of money and time? Are my bloodwork results definitive enough to print and stamp my (unwanted) Celiac membership card?

[trents]

With those numbers the biopsy seems unnecessary to me. Many physicians are now abandoning the biopsy when the serum antibody numbers are strongly positive as are yours.

[Apk07]

14 minutes ago, trents said:

With those numbers the biopsy seems unnecessary to me. Many physicians are now abandoning the biopsy when the serum antibody numbers are strongly positive as are yours.

Thanks, I appreciate the insight. When you say "strongly positive," are the gliadin antibody levels like ridiculously high? I can see that sub-15 is "normal", but I'm not sure what the upper ranges are for reference. I made an appointment with the GI doctor for Monday to talk this over, but I've also been off gluten for about a week and a half now... I'm fearful they might say "lets do a biopsy anyway" and then I get a false negative biopsy. For some reason I keep telling myself that my diagnosis needs to be stamped by someone before I'm allowed to tell people I have Celiac. I might be worrying about this too much.

[trents]

They aren't ridiculously high but they are firmly positive. By all means, if you feel you need to get a biopsy for confirmation, do so. You already have your doc on track with that and many benefit from the double confirmation in the sense of it helps them avoid cheating on the gluten-free diet. It's more difficult to rationalize it all away.

Edited February 26, 2021 by trents

[Scott Adams]

I agree with @trents that your tests are firmly positive, so much so that even if your biopsy were negative I don't really see how your doctor could tell you, with a straight face, to keep eating gluten. If your biopsy were somehow negative or inconclusive, my guess would be that your doctor would still ask you to go gluten-free to see if it relieved your symptoms and low vitamin D, and if the diet helped would likely still diagnose you with celiac disease based on this. I don't want to second guess your doctor, but you can ask them yourself what they would recommend if the biopsy were inconclusive or even negative.

This article might be helpful:

 

[Apk07]

@Scott Adams should I be concerned they didn't do a tTG test?

[Scott Adams]

I don't think so...this is an older article but it says: "A sensitive testing protocol includes testing for both IgA and IgG anti-gliadin antibodies since a significant portion of celiac patients (approx. 2-5%) are IgA deficient. This combined IgA and IgG anti-gliadin antibody assay has an overall sensitivity of 95% with a specificity of 90%."

 

[AlwaysLearning]

In the past when I have seen people here advocating for biopsies, it was because they are a method for evaluating healing. I personally would not do it. Any sort of invasive procedure carries some risks. But I would make sure to take the diagnosis seriously and not cheat or cut corners when it comes to going gluten free. 

Oh, and congratulations on finally getting a diagnosis! That is huge. 

[Scott Adams]

Most cases of celiac disease can now be diagnosed via blood tests alone, and this is the current recommendation in Europe. In a minority of cases it makes sense to do a biopsy, but I agree, we've run articles on issues they've had with contaminated duodenoscopes and endoscopes, so these procedures are definitely not without risk.

 

[Apk07]

I appreciate all the advice. I saw a GI doctor today and they scheduled a biopsy for me anyway, to "confirm" the blood tests. It's scheduled for about 6 weeks from now given I already stopped eating gluten. She told me to start eating "normally" again, and then if I start experiencing worsening symptoms to just stop again and they'll call off the biopsy.

I still have my reservations but I'll try to follow what she says. My first victim was some Girl Scout cookies... so we'll see what happens I guess. In an ideal world I'd be vaccinated for COVID beforehand but I doubt I'll get that lucky.

[trents]

9 minutes ago, Apk07 said:

I appreciate all the advice. I saw a GI doctor today and they scheduled a biopsy for me anyway, to "confirm" the blood tests. It's scheduled for about 6 weeks from now given I already stopped eating gluten. She told me to start eating "normally" again, and then if I start experiencing worsening symptoms to just stop again and they'll call off the biopsy.

I still have my reservations but I'll try to follow what she says. My first victim was some Girl Scout cookies... so we'll see what happens I guess. In an ideal world I'd be vaccinated for COVID beforehand but I doubt I'll get that lucky.

Sounds like a reasonable plan. Were the GS cookies the victim or were you? Kudos to the doc for remembering to tell you to go back on gluten before the endoscopy/biopsy - or did you have to prompt him/her about that?

[Apk07]

21 minutes ago, trents said:

Sounds like a reasonable plan. Were the GS cookies the victim or were you? Kudos to the doc for remembering to tell you to go back on gluten before the endoscopy/biopsy - or did you have to prompt him/her about that?

The cookies stood no chance.

I feel I led the conversation on Celiac considering I've obsessed over it the past few weeks. I'm confident the doctor knew what she was talking about, but there is always the suspicion of "just doing it for the money" and "outdated practice." This is only the second time in several years I've seen this doctor so I can't say for sure.

I am almost hoping the food I'm starting to eat again will hurt me just so I can sleep soundly knowing the blood tests were right.