Can Positive Celiac Tests Be Wrong? (What Should I Do?)

[SuperMolly]

I was diagnosed with Celiac Disease in Nov. '08 by a blood test and have been gluten-free since. About the same time I was diagnosed, I also found out I was pregnant. Because of this I never had the biopsy. I feel so great now (unless, of course, I come in contact with gluten-I'm very sensitive to it). However, I am a bit confused by the gastroenterologist. She wants me to go back on gluten for 3 weeks so I can have the biopsy to confirm I have Celiac Disease. Every other doctor or dietician has told me there is no doubt that I have celiac disease, that false positives in the blood test are very rare, and the biopsy is not always accurate. My blood test results were as follows:

IgA...21.7 (normal 0-10)

IgG...29.7 (normal 0-10)

tTG...20 (normal 0-3)

At the time I was diagnosed I was losing weight rapidly, was told I had lost 10% of my bone density, was terrified to eat anything because food made me so sick, and was having severe night sweats. I had already figured out wheat made me feel horrible and triggered depression/anxiety and had avoided wheat for 3 years prior to the blood test. Of course I knew nothing about gluten. As soon as I removed gluten from my diet I felt better. In fact, I never knew I could feel so great! The feeling that I was dying left several months later.

My husband and close friends think there is no reason for me to go back on gluten to have the biopsy. I agree as I am terrified of even a crumb, but the GI Doctor seems mighty convincing that I need to do this to be a proper Celiac. What do you think?

[Jestgar]

  On 4/22/2010 at 8:05 PM, SuperMolly said:

The feeling that I was dying left several months later.

I know exactly what you mean by this.

There is no need to get the biopsy. What will it tell you that you don't already know? Nothing. What advantage is there to having the report in your medical file? None.

What other medical test insists on causing damage to a person in order to convince the doc that there is something wrong? None that I can think of.

[jerseyangel]

  On 4/22/2010 at 8:05 PM, SuperMolly said:

My blood test results were as follows:

IgA...21.7 (normal 0-10)

IgG...29.7 (normal 0-10)

tTG...20 (normal 0-3)

This is without a doubt Celiac--Molly, my advice would be to stick with your gluten-free diet, continue to heal and feel better, and please don't damage your intestine again just to satisfy that doctor.

[tarnalberry]

And what would happen to the world if people weren't "proper" celiacs, "proper" diabetics (getting tested positive for diabetes before changing their diet to help reduce blood sugar levels), "proper" preggos (waiting until a positive pregnancy test to take prenatal vitamins and avoid things unhealthy to a fetus), etc.? Oh, hey, I think we'd be healthier and happier.

Your GI sounds like a typical, main-stream, pharmaceutical tests are the best way to know anything, type of doctor. If she's worried about something else being wrong, she can test for that, but you don't have to eat gluten (and make yourself sick, and possibly cause distinct damage) to test for other things. And she's nutty if she thinks three weeks will be long enough anyway.

[GFinDC]

Ask your Gi if he is willing to drink Drano every day for 3 weeks. Then maybe you will consider the gluten challenge.

You could try Enterolabs testing if you want to pursue a non-invasive test. You have already proved you can follow a restricted diet, so I am not sure a diagnosis will help anything. I think some people want the diagnosis to help bolster their resolve to follow the diet. Some people want a diagnosis so they can participate in clinical studies on celiac disease. If you want to be a guinea pig at some point a biopsy proven diagnosis could be helpful.