Need Advice On Blood Test Result And What To Do Next

[Claire112]

On Monday 8/3 I had blood drawn for a tTG Antibody test. My doctor is at a large, reputable hospital in a major city, yet communication has been a nightmare.

The nurse called today to report that the result was "negative". I asked specifically for the number and the range, and she said "it was zero". She did not know the range.

I told her that the result didn't sound right, and that I at least needed the range. She also agreed that it didn't sound right. She spoke with my doctor, and the doctor sent me this electronic note through the patient website:

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Details of other blood chemistry tests as follows:

TTG/Endomysium Ab, IgG: 0.0

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Still, no range. I am having many symptoms, very low Vitamin D that doesn't improve even after weeks on prescription strength supplements, I already have one autoimmune disease (Graves Disease), my hair is falling out, I am sick all the time, but yet I can't even get a straight answer or speak to the doctor. She had the nurse tell me that if I want to talk to her about this I should make another appointment.

Ok, aside from needing a new doctor where do I go next? Is it really possible that my tTG Ab result is 0.0? Should I just go straight to Enterolab?

[ohsotired]

How frustrating! I agree that it sounds like it's time for a new doctor!

You should call them back and tell them you want them to send you a paper copy of the lab results in the mail (or swing by and pick it up if you're close). That should have the ranges listed on it.

Is that the only test your doctor ran to check for Celiac? There are five altogether that make up the complete Celiac panel (can't remember them off the top of my head - bad brain fog today). If your doc only ran the one, then you could ask for them to be run again, only this time give him/her a list and insist they all get done.

OR, you could go straight for Enterolab if an 'official' diagnosis doesn't matter to you.

OR, you could go on a strict gluten free diet to see if your symptoms resolve - but don't do this yet if you plan on getting further blood testing for Celiac, so you don't skew results.

Good luck to you! I know this whole process is frustrating, but hopefully very soon you'll be on the road to recovery!

[Claire112]

Is that the only test your doctor ran to check for Celiac?

Thank you for your reply.

Yes, despite the fact that I asked for the others, the doctor refused to run anything other than the "screening test", which she said is the tTG Ab, however, from the result listed I'm not sure WHAT test was actually run. I was really hoping someone could tell me if this result: "TTG/Endomysium Ab, IgG: 0.0" makes any sense.

I have already ordered the Enterolab testing and the kit is on the way. I am also going 100% gluten free, as I have in the past and noticed an INCREDIBLE difference. I am just suffering physically, and am so tired of doctors telling me "we don't know why" or treating me like I am a hypochondriac, or worse, just tossing pills at me and hoping one of them will work.

[ohsotired]

In case you don't have "the list", here it is:

Total IgA

tTg IgA

Gliadin AB IgG

Gliadin AB IgA

*tTg IgG

EMA

It looks like your doc only ran the one with the star by it. Honestly I don't remember which individual test is the most "sensitive" but to get a true picture, they really need to run them all together.

Had you already gone gluten free prior to the test she ran? If so, that could've skewed results.

If you've already ordered the Enterolab test kit, and are going 100% gluten free because it makes you feel better, it sounds to me like you don't need the official Celiac label. And the Enterolab test won't tell you if you are indeed Celiac, it will tell you if you carry the genes which predispose you to it.

I totally understand your frustration with doctors telling you "don't know why" and throwing pills at you. Been there. Am there right now with suspected hypothyroid/Hashi's, but haven't found the right doc to tell me for sure if that's the issue. [HUGS] Hang in there.

Maybe if you post your location, someone near you will see it and recommend a doc that helped them.

Good luck to you!

[Claire112]

Had you already gone gluten free prior to the test she ran? If so, that could've skewed results.

Yes, I was 100% gluten-free from February to June of this year (except I was eating whole rolled oats, which I will take out next time), and I went back to eating gluten in June and July, so I figured the tTG Ab would register something. Not 0.0?????

Honestly at this point I'm ok without having an official diagnosis. I have Graves disease, an autoimmune thyroid disease so I already know I am prone to autoimmune issues. My bigger concern is about the genes and probability, because I have 2 young children who I am also concerned about. I am hopeful that Enterolab can give me my answers.

Good luck on your hypothyroid/Hashi's diagnosis. Just like with Celiac, sometimes running the "screening test" (TSH only) isn't enough. You need the TSH, T3, FT4 etc. to get the big picture. I know I felt something was "off" with my thyroid for quite a while before the tests finally showed it. And then when they did the results were off the charts in a very short amount of time. Maybe that's just the way these autoimmune things work.

[momxyz]

from what I've read, the anti-gliadin IgG is the most sensitive test but least specific. Here is a detailed description of the tests:

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html