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Biopsy Or Not?

luciasmom

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luciasmom Rookie
luciasmom
Posted

My 2yr old daughter (Lucia) who i highly suspect has celiac disease has an appt with a Dr (in the US) in a few weeks. I've had her on a gluten -free diet for a few months now and her symptoms have gone away. I'm expecting my 2nd baby this summer and would like to start Lucia in school. We live in a relatively small town in Mexico and celiac disease is totally unheard of, plus i don't know why but the people i've told about it just don't seem to take it too seriously...so all this makes me scared of putting Lucia in school because even though i can control the food she takes to school i can't control if she has a bite of someone else's cookie, bread, etc..

I know i can go talk to the teachers and all but i don't think they would really take care of my daughter on such a personalized level.

So what i have decided is to have her tested and see if in fact she has celiac disease and get all the doubts out of my mind once and for all. And if it turns out she does have it then we will have to accept the diagnosis and proceed with the gluten-free lifestyle we've been trying to adopt. (BTW nobody in my family or my husbands family has celiac disease as far as we know). But if not, maybe it's something else we can approach differently.

The rush to do all this is because i want to KNOW before our second baby is born and before i start thinking on school options, etc.

What is making me scared and nervous is the thought of having her on gluten filled foods for 4 weeks, and the consequences that will have on her body. But also not knowing if to proceed with a biopsy after the blood results come out.

The doctors nurse said today that if the blood results turn out positive then we wouldn't have to do the biopsy because that was proof enough of celiac disease(unless the parents wanted further confirmation), but i read on Dr. Green's book that the biopsy is the gold standard for diagnosing celiac disease. So i'm confused!!

My thoughts are that since we're basically going to make her sick for a whole month and then travel far away for the doctors' appt then we should just go ahead with the biopsy. Of course the biopsy also makes me extra nervous!!

I would appreciate your thoughts on this! Thanks!

Lucy

Sorry i made it sooooo long but english is not my first language and i have a little bit of trouble expressing myself.

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spunky Contributor
spunky
Posted

Would having a diagnosis from Enterolab be possible for you?

Non-invasive, no need to eat gluten to take the test, but it is expensive and some doctors don't accept his results. He is a gastroenterologist, but has not published his findings.

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I have no personal experience with this myself, but have read favorable things from others who have used this lab for their diagnosis.

nikki-uk Enthusiast
nikki-uk
Posted

Just to point out it would probably take longer than 4 weeks for enough damage to occur to sufficiently show up in a biopsy.

More like 8weeks (maybe longer??) on a high gluten diet and even then it might be missed :(

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      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
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