Torn About How To Test My Son, Lots Of Questions

[Sarah8793]

First a little history again. I have 2 celiac genes and an active immune response to gluten (EnteroLab diagnosed). I know I should have my kids screened but I am trying to decide the best method. There are pros and cons to each. Here are my questions, your thoughts are so appreciated right now.

1)Do I test them regardless of symptoms (I kind of think yes). My 7 year old has some behavioral symptoms but that is it. My 3 year old has no symptoms.

2) I can have my pediatrician test them based on my gene test results w/EnteroLab, but then does documenting that in my childs medical chart pose problems with insurance later?

If I go the above route, I will not have them biopsied, I will then go through EnteroLab. The reason I am considering having the Ped. test first (blood test) is to save money.

3)Can insurance companies get access to medical charts or do they simply read the procedures on claims sent in by doctors' offices? In other words, tests run do not indicate celiac. Only results posted in a medical chart can prove that.

I am confused and really don't know the best route, just that I want to do something.

Thanks for any input on this,

Sarah

[AndreaB]

1)Do I test them regardless of symptoms (I kind of think yes).

2) I can have my pediatrician test them based on my gene test results w/EnteroLab, but then does documenting that in my childs medical chart pose problems with insurance later?

3)Can insurance companies get access to medical charts or do they simply read the procedures on claims sent in by doctors' offices? In other words, tests run do not indicate celiac. Only results posted in a medical chart can prove that.

1) I would test regardless. I did enterolab testing with the 4 of 5 of us (just not baby yet) based on my allergy tests stating I was allergic to gluten among other things. 3 out of 4 of us tested positive for active gluten intolerance and all have 2 genes that either predispose to celiac or gluten sensitivity.

2) It wouldn't hurt to get the blood panel done but if the children aren't showing symptoms it would more than likely come back negative (not always though). Some people has had problems with insurance but I don't know about that. I sent the enterolab results to my doctor but haven't heard anything from her.

3) I don't know the answer to this question...sorry.

[Nic]

Hi, what kind of insurance problems are you worrying about? I had my sons tested through our pediatrician and the ped. gastro. The only things that were ever not covered were when we had to use a lab out of our network because they were specialty labs. In one of those cases, the ped. GI wrote a letter to the insurance company asking them to cover it because we needed a more definitive answer. They did cover it after that.

Nicole

[Sarah8793]

Hi, what kind of insurance problems are you worrying about? I had my sons tested through our pediatrician and the ped. gastro. The only things that were ever not covered were when we had to use a lab out of our network because they were specialty labs. In one of those cases, the ped. GI wrote a letter to the insurance company asking them to cover it because we needed a more definitive answer. They did cover it after that.

Nicole

Sorry, I should have explained that part. I'm not worried about insurance paying for any test the Ped. orders. I'm more worried about if I want to take out life insurance one day. I don't know how the label would affect my kids either. My husband is wondering about this aloud with me. Just trying to make sure I do this the best way.

Did your sons have any symptoms before testing? Because I don't know if my Ped. will test based on my genes or not.

Sarah

1) I would test regardless. I did enterolab testing with the 4 of 5 of us (just not baby yet) based on my allergy tests stating I was allergic to gluten among other things. 3 out of 4 of us tested positive for active gluten intolerance and all have 2 genes that either predispose to celiac or gluten sensitivity.

2) It wouldn't hurt to get the blood panel done but if the children aren't showing symptoms it would more than likely come back negative (not always though). Some people has had problems with insurance but I don't know about that. I sent the enterolab results to my doctor but haven't heard anything from her.

3) I don't know the answer to this question...sorry.

Andrea,

Did your kids have obvious symptoms or were you surprised to find out they had gluten intolerance?

[inquirer]

I had both my kids tested since my husband has two gluten sensitive genes and I knew they would get at least one from him. I figured I probably had some of my own celiac genes to pass on even though I hadn't been tested and it turns out I was right. I figured if it turned out they were sensitive it would make it a lot easier to make the whole house gluten free. Also, they learn the lifestyle while at home. My daughter is older and could make the connection between her symptoms and gluten. My 11 year old is having a harder time with it and I'm not pushing the issue. At home, he is gluten free and the occasional gluten treat he gets outside I'm not going to have a fit about. At least he's one step ahead from where he used to be. Also, the less gluten he eats the more sensitive he's becoming and now when his stomach hurts or he doesn't feel well after eating gluten, I can point out the cookie or whatever that he ate so he can make the connection.

My husband has a serious autoimmune disease and I think gluten played a big role in it. Stomach upsets sometimes can be shrugged off but not a life threatening illness. I don't want my children to go through what he has.

I had my kids tested through Enterolab and have pondered the issue of whether to inform their doctors. I think I want to keep the gene testing out of the charts. At this point, I don't see any real reason to tell them.

[Sarah8793]

I had both my kids tested since my husband has two gluten sensitive genes and I knew they would get at least one from him. I figured I probably had some of my own celiac genes to pass on even though I hadn't been tested and it turns out I was right. I figured if it turned out they were sensitive it would make it a lot easier to make the whole house gluten free. Also, they learn the lifestyle while at home. My daughter is older and could make the connection between her symptoms and gluten. My 11 year old is having a harder time with it and I'm not pushing the issue. At home, he is gluten free and the occasional gluten treat he gets outside I'm not going to have a fit about. At least he's one step ahead from where he used to be. Also, the less gluten he eats the more sensitive he's becoming and now when his stomach hurts or he doesn't feel well after eating gluten, I can point out the cookie or whatever that he ate so he can make the connection.

My husband has a serious autoimmune disease and I think gluten played a big role in it. Stomach upsets sometimes can be shrugged off but not a life threatening illness. I don't want my children to go through what he has.

I had my kids tested through Enterolab and have pondered the issue of whether to inform their doctors. I think I want to keep the gene testing out of the charts. At this point, I don't see any real reason to tell them.

Thanks so much for sharing this. I can't tell you how much this and the other responses are helping me to sort this out. Your approach to letting him occasionally eat it while out and also letting him learn as he gets older makes sense. As you say, he is one step ahead from where he used to be. I think if I approached my son's gluten free lifestyle this way it would feel more realistic. This helps me to go forward with testing. Becuase honestly, I think the thought of taking gluten out of his life completely is slowing down my urge to test him. Terrible huh? I guess it is a form of denial or not wanting to know. Strange because I am not like this with myself. Okay, enough rambling on my part. Thank you again!

Sarah

[AndreaB]

Andrea,

Did your kids have obvious symptoms or were you surprised to find out they had gluten intolerance?

Neither of my kids had any symptoms and my oldest son had mild malabsorption. I'm sure it would have caused symptoms eventually that were more noticeable. We are just glad we caught it so early before much damage was done.

We were a little surprised but had been eating a lot of gluten being on the vegan diet, we've since gone back to a meat eating diet.

[Sarah8793]

Neither of my kids had any symptoms and my oldest son had mild malabsorption. I'm sure it would have caused symptoms eventually that were more noticeable. We are just glad we caught it so early before much damage was done.

We were a little surprised but had been eating a lot of gluten being on the vegan diet, we've since gone back to a meat eating diet.

Thank you Andrea.