Genetic Testing Questions

[gigimom]

Two of my children have recently been diagnosed with celiac disease. They had obvious symptoms and obvious improvements on a gluten-free diet. My third child often had bad headaches and joint aches so I thought she would probably test positive too. But, she had an IgG of 64 and other tests were negative. Her biopsy was negative (no flattened villi but superficial congestion -- whatever that means). I started her on a gluten-free diet. I think she seems okay on the diet but her symptoms are so much more vague than the other kids. I'm considering some genetic testing for her and maybe my husband and me. I need some input on what is the best option. I've heard of Kimball Genetics and Enterolab. Are they really reliable and worth the money? My doc told me to save my money and not do the tests. I just need more strong evidence for my third child because she does not think she needs to stick with the diet -- mostly because she really doesn't have the same digestive reactions that my other two children have. Any suggestions?

[tarnalberry]

The only trouble with relying on genetic testing is that it won't tell you if she has it - only if she might develop it. A lot of people carry the gene without developing celiac. The fact that she had a high IgA (and I'm presuming it was anti-gliandin IgA, but correct me if I'm wrong) means that her body is reacting to wheat - her immune system is trying to fight it. You could consider, after she's gluten-free for a while, trying a gluten challenge (I'm talking a day of gluten-loading here, not three months), to see if there are any more clear symptomatic reactions, but if she truely is celiac, that will cause damage.

For clarity's sake, you might also want to ask the doc what the lab who read the slides uses to define "damage" - some labs require almost total atrophy.