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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?

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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?


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

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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


Suzie

London, ON, Canada

celiac disease diagnosed by pos tTG March 2006 and pos biopsy June 2006

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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.

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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

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.

check out

https://www.enterolab.com/Home.htm

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


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

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