False Negative Blood Tests

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Long story for a quick question:

I am 11 weeks pregnant with my second child. About 4-5 months after the birth of my first child in the winter of 2005, I first started developing lactose intolerance. I simply ignored it and avoided any dairy until I found out I was pregnant in January.

My diet is rather limited as I do not eat meat or fish. This is not a life choice, but a problem I have keeping it down. I simply find it disgusting despite my repeated attempts to get protein in this form. (Let me add that I also find tofu and similar products impossible to keep down.) It is not a physical problem that I have but a psychological issue.

So - during my first pregnancy, dairy was my main protein.

When I went back on dairy in January and tried lactaid pills - I still had severe "d." I was referred to a GI doctor who feels my symptoms are either lactose intolerance or celiac disease. He ordered the endomysial IgA and Hu-tTG blood work. I am waiting for results early next week.

In the meantime I have gone gluten-free. I do not feel better as I have morning sickness which makes keeping protein like beans and peanut butter (and just about anything else) hard to eat and keep down. I have lost approximately 15 pounds. Generally, I am just exhausted.

The GI doctor said he will not do a biopsy because of the pregnancy. So, if my blood work is positive - I will treat it as confirmed celiac disease. If my blood work is negative, my GI doctor said we should act as if I do not have celiac disease.

MY QUESTION: I am worried about a false negative blood test result. However, I really could use the expanded dietary choices for nutrition in my pregancy. Would you go gluten-free or not if you blood tests came back negative and you were in my boat?

[GeoffCJ]

MY QUESTION: I am worried about a false negative blood test result. However, I really could use the expanded dietary choices for nutrition in my pregancy. Would you go gluten-free or not if you blood tests came back negative and you were in my boat?

I had a negative blood test. I had clear damage during my endoscopy. I had positve results with enterolab.

Have you considered testing through them?

[Suzie-GFfamily]

Did they do a total serum IgA in addition to the celiac blood test? If your IgA levels are low this could cause a false negative. You could ask for a repeat blood test including the total IgA.

Are your iron levels low? You mentioned feeling very tired.

Suzie

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GeoffCG - I know the tests were sent to Prometheus Labs. Is enterolab more reliable? Did you ever have a follow-up blood test that was positive?

Suzie - Thanks for the suggestion on the total serum IgA. Last pregnancy exam a month ago did the test for anemia and all was ok.

I guess it sounds like I should not completely rely on the blood test if its negative at this point. Better to be safe than sorry and ask for the total serum IgA. I suppose the only negative would be that I would need to resume a gluten diet for the test.

Thanks again for the advice.

[GeoffCJ]

GeoffCG - I know the tests were sent to Prometheus Labs. Is enterolab more reliable? Did you ever have a follow-up blood test that was

I should have explained better. Enterolab does stool sampling, so it's non-invasive. They check for many different things, including some other food issues, and offer a gene test.

They get some criticism here for not being published, but having dealt with intellectual property issues, I can see some good reasons they might not be publishing. People also think they have a suspicious number of positives, but I think it's logical that on a Celiac board, you're likely to get many positives, and several people have reported getting negatives.

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My endoscopy showed damage, and I had celiac genes from Enterolab, as well as high levels on the antibodies. I did not get a retest for blood.

Good luck!

Geoff