Testing Importance?

[Beth5]

My husband got alopecia areata a couple of years ago. He did many tests and we just accepted it as a bad deal, finally. He is a nurse practitioner and has done a lot of his own testing. When my son was diagnosed with wheat allergy(amongst others), I cut wheat out of a part of our diet. My husband was actually able to grow his hair back. 5 months later it started to fall out again. (A few weeks ago) I started to do some research and found out about celiac. We put him on a gluten free diet and he began to feel better. All of a sudden, many different things he had suffered from for years began to improve(alopecia, digestion, arthritis, fatigue, ect) He did some testing, all which turned out negative. He could just opt to do the diet, as there is no question that he has a gluten intolerence. His hair is growing back, ect. I just read Dr. Greens book Celiac Disease: A Hidden Epidemic. My question is, should he be tested further. He has been on the diet about 4 or 5 weeks now. I don't know if its too late to do further testing. He did a panel of 5 tests, but he hasn't done the genetic testing or the biopsy. My concern is would it be wise to have him diagnosed due to the potential of the children having it(heredetary factor), yet I have heard that there is so much false testing that is it really necessary? I have no question that he has it but I have lots of questions and my youngest son has a wheat allergy and while I know there is a difference, I suspect he could have a gluten intolerence too. He is only two, but I notice certain things like when he consumes pancakes made of barley, for example. Also, my pediatrician told me to put all the children on a gluten free diet for two weeks and see how they do. I suspect my daughter has a problem too. She is very thin and her stomach is always bothering her. She is 5. My pediatrician said she would make a note on the medical records if my children reacted. I haven't had a chance to make an appointment with her and need too. I guess I am just wondering if it is worth doing all the testing or would it be a waste of time and money. We would have to pay a good bit out of pocket as our insurance has a high deductible. I guess I just would like a little feedback. Thanks!!!

[shopgirl]

If he's been off gluten for five weeks, his biopsy would definitely be effected. As far as genetic testing, it's not proof of Celiac. People can be carriers of the gene/genes without every actually expressing them. We have all kinds of stuff in our DNA that we don't necessarily use. It's just there because it was passed down to us. My mom gave me this meat tenderizer two years and I've never used it; it's just there in the drawer. Kind of the same thing (but less random).

Unless you need some kind of positive test result to show your kids' schools, I don't see why a positive dietary response isn't enough. If they get better when they don't eat gluten, great. Maybe when they're older, they could challenge gluten for awhile to get a diagnosis if they need it. But my feeling is, if you don't need a piece of paper that says, "Your child has Celiac Disease," why spend the money? Especially if your pediatrician is willing to go to bat for you if the kids need special treatment at school.