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Inconsistent Bloodwork

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Okay, experts out there, I'm struggling with a few things. I've learned that this is truly a roller coaster ride...

My 7 year old has minor GI symptoms. Mostly constipation which flares up here and there. We've been dealing with that for about 3 years as well as anxiety and bedwetting. All three can be associated with Celiac, according to my research.

In 2010 she tested positive on the Endomysial Antibody Screen which is reportedly 100% specific for Celiac. She had a low Immunoglobulin A at that time which sometimes affects the accuracy of the test but not in this case. She had a negative biopsy.

Fastforward to 2011. She tested NEGATIVE on the Endomysial Antibody Screen through Prometheus as well as negative for TTG but positive for IgA. She has DQ8. Two CBC's revealed anemia, elevated sed rate and platelet count. 2nd biopsy and colonoscopy was normal. As far as I'm concerned, no more testing. She's been through enough.

What is the deal? Why would her Endomysial Antibody Screen change or is this common? We've been gluten free for 1 month and NO MORE BEDWETTING! For almost 8 years it was a nightly ocurance. Her younger brother with numerous stools a day had elevated IgA through Enterolab's fecal testing. I have mixed feelings about Enterolab through my research (ad nauseam) on this website and on the web. At some point, you just want resolution and medical support which seems hard to obtain!

I know some people don't feel that a physican's support is necessary but it would make me feel a lot better. Any thoughts?

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Keep that kid on a gluten-free diet!

A liberal MD would diagnose her. She's had a mixture of positive blood test results, is in a high risk group, and had positive results from treatment.

A picky one would review the biopsies well. Were they taken correctly? Were enough samples taken? Was the pathologist skilled? Did they note earlier signs, pre-flattened villi?

A somewhat sadistic one would insist on a dietary challenge, and then diagnose her as gluten sensitive or non-celiac gluten sensitive after she starts wetting the bed again.

I haven't heard of an EMA changing, but usually a positive EMA = diagnosis! Did her diet change between the two tests?

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No change in diet but the subsequent lab reports don't show what her Immunoglobulin A was at the time of the test so it is possible that that affected the outcome of the EMA. I called our GI today to schedule an appointment just to review results. I want a consultation I guess. I'd like for him to explain it all in detail and tell me why he is dismissive. I have found that he reluctantly listens and dialogues with me which is better than nothing! I feel he is the best doctor that I've been able to find in my area with regards to communication and ease of appointments. Hopefully with my persistence and research, we can come to a place where I feel comfortable and my kids are taken care of.

I also read about intraepithelial lymphocytosis and am going to ask him if he ordered tests for that during the biopsy. It seems that that is a significant piece to the villi puzzle as well.

She feels quite empowered now that she has been able to control the bed wetting. It has been such a great change. I can't wait to see how she reacts to entering a new grade in school next year. She was terribly anxious last year but now on a gluten free diet, I'm hoping to see positive changes.

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