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[Guest motherof6]

My daughters gastro told us that there are gene they know point to celiacs but there are others they have not found yet. According to her Dr Gene testing is not the gold standard as to whether you do or do not have it . Sometimes it is only time that tells and continueing to stay on the diet and reintroduce on a yearly basis and test on a yearly basis.

good luck. I wish there was more known about this disease. It took my daughter 3 years to get a diagnosis.

  Izak said:

We're still waiting on blood test results for my son, but I'm going to go out on a limb and say - pretty confidently- that my son's ped. is one of those docs. I think what it boils down to is a willingness to accept 'unpopular' science, or at the very least, have an open mind to the fact that there are a zillion things in life that you just can't understand, or easily understand. My son's doc is the kind of person who has always told me to 'do what feels right for you and your son' - I can remember being in there after getting a horrific case of thrush at 6 weeks postpartum, trying to reconcile the reality of incredibly painful breastfeeding on top of all my hormones and the complete craziness that a first baby brings, and tentatively suggesting that maybe I could give him some formula in addition to breastfeeding - and she was this amazing pillar of support, telling me to do what worked best for BOTH of us, and not to get myself worked up about it. Same thing when I approached her about his chronic D and suggested maybe I should take him off dairy? And she wholeheartedly supported my investigation and actually SHE was the one who suggested a wheat allergy, which I took one step further by removing gluten from his diet - and presto, we had our answer. Was the answer on paper? Did it some from a lab? No. The answer was, we decided to try something to address an issue - in this case, removing gluten to stop the D - and it worked. We decided to have the blood tests after the fact - I do admit to being kinda curious about the whole genetic thing - but my point is, regardless of what the results are, I know that the diet works and that's enough for me - and my doc. And my main point is that there are doctors who are open-minded, and listen to you, and take your real-life day-to-day experiences as a parent and a mother as seriously as any lab diagnostics. How to find them? I'd start by word-of-mouth...ask people you know for opinions, ask the nurses at the clinic/hospital, heck, interview the docs themselves! Any doc worth his or her salt should be happy to meet with a new patient for a 'get to know you' chat, so you can get an impression of what they're like as a person and a doctor. It's a bit of extra effort, but it's so worth it to find a medical professional whose opinion you respect, and more importantly, who respects your opinion just as much.

Be prepared it may come back negative because he has been gluten free there may not be any glutens to find. That does not mean he is'nt celiacs just your doing a good job keeping gluten out of his diet.

My daughter had been gluten free for 6 months before we did her blood test and it came back negative. It was'nt until she had her biopsi that thank Goodness was enough damage to prove she had it. I know it sound awful to be glad there was damage but if there hadn't have been we still wouldn't be sure. Our

gastro said there really is no gold standard of testing just keeping on the diet. So I'm glad we have an answer.

[Izak's Mom]

  motherof6 said:

Be prepared it may come back negative because he has been gluten free there may not be any glutens to find. That does not mean he is'nt celiacs just your doing a good job keeping gluten out of his diet.

That's why we decided not to have the serum/IgA testing, just the genetic component. For the serum/IgA to work, you have to be eating gluten and have it in your system (like you said), and Ike's been gluten-free for months - AND I'm absolutely NOT willing to give it to him just to get something on paper telling me what I already know. But the genetic test - why not. My insurance covers it, and like I said, I am kinda curious about it since I suspect his dad has got it in the family.

[Guest Robbin]

Hi! I am hoping your insurance is better about it than mine, since they told me on the phone it would be covered and now I am in appeal over it, along with the other enterolab tests.

[Izak's Mom]

  Robbin said:

Hi! I am hoping your insurance is better about it than mine, since they told me on the phone it would be covered and now I am in appeal over it, along with the other enterolab tests.

I actually wound up having it done through my son's ped. (at the local hospital) so there wouldn't be any questions about coverage. They use Prometheus labs.