Frustrated With Co-Parent

[Christina.V]

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

[nvsmom]

  On 5/29/2014 at 5:19 PM, Christina.V said:

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

 

How frustrating for you.    I hope he realizes that he is not the centre of the universe soon.

 

I hope you and your daughter are feeling better in the meantime.

[beth01]

What do the numbers mean anyway?  Her tests results are 27.6, isn't it supposed to be <4.0?  Mine was 35.6, and I have a TON of health problems, my daughter's is >100 and she has little symptoms. Isn't a positive a positive?  I am not trying to sound b%$@#y, just asking.

[beth01]

Another thing, what kind of custody agreement do you have?  Could you go to mediation to try and get your ex to change his mind? Maybe with the help of a judge you could get him to comply.  It has to be some sort of abuse to your daughter feeding her foods that are going to harm her later in life.  I know I told my ex-husband after my daughter's diagnosis that if he wasn't going to change her living conditions so it was safe for her, she wasn't going home with him. He changed his tune immediately.  Of course, I am sicker than hell right now and told him if he didn't change her lifestyle, she would end up like me.  He has seen me, knows I am not well.

I kind of want to slap your ex myself!

[nvsmom]

  On 6/1/2014 at 2:41 AM, beth01 said:

Another thing, what kind of custody agreement do you have?  Could you go to mediation to try and get your ex to change his mind? Maybe with the help of a judge you could get him to comply.  It has to be some sort of abuse to your daughter feeding her foods that are going to harm her later in life.  I know I told my ex-husband after my daughter's diagnosis that if he wasn't going to change her living conditions so it was safe for her, she wasn't going home with him. He changed his tune immediately.  Of course, I am sicker than hell right now and told him if he didn't change her lifestyle, she would end up like me.  He has seen me, knows I am not well.

I kind of want to slap your ex myself!

Her daughter does not have a diagnosis yet, and the doctors are dragging their feet, so that makes it hard, if not imossible, to make him comply. 

[DinaZ]

  On 5/29/2014 at 5:19 PM, Christina.V said:

I am one of the "silent" cases for sure, so I did voice the same concerns as you all are pointing out. Not only is she not showing severe symptoms, but she is also on track for her growth charts and her numbers are slightly above normal (not in the 100s). The decision to hold off was not made lightly! The hope is that her numbers may normalize. 

 

The co-parent does need some education on it, however, without very strong direction from the specialists at Children's nothing is going to change. I can give him as much information as possible, I can preach until I'm blue in the face.

 

Thanks for caring! It's so nice to have a community like this!!

Christina-I feel for you guys. Is there anything you can do through legal channels?

[DinaZ]

I think it's time for a new doctor and get her tested. There should be no reason for a doctor not to test if there is suspicion that she has celiac.

[Christina.V]

Labs have different ranges. In this case <15 is a negative. So the 27.6 number on the TTG IgA is not "highly" elevated. The recommendation is coming from two of the top specialists in Colorado. I think I said this before, but the worry is that we actually have caught it too soon to tell, and that long term a false negative diagnosis will be more detrimental than holding off. I agree, because IF she does have celiacs and gets a false negative, the co-parent will fight me on getting her re-tested in the future.

 

I am actually comfortable with waiting for 6 months. We share custody 50/50 and have shared decision making as well. I don't see how a judge would dictate that the endoscopy be ran with so much medical advice to the contrary. I was extremely frustrated a couple months ago BEFORE we met with the doctors. They said they've seen these numbers go back to normal over a short period of time, hence the 6 months. I'm hopeful that they do.

[beth01]

I think that people are going to have different opinions for two different reasons:

1. They have children with celiac and have been through the testing before ( some with a co-parent).

2. The degree in which they are sick if they are Celiac themselves.

 

I don't know much about Celiac and it's testing, I was just diagnosed two months ago.  I was a lab tech for 16 years but didn't work in immunology so I didn't deal with a lot of testing dealing with autoimmune disorders. I know different labs use different methodologies and instrumentation so that could be why the normal values are different.  For Mayo in Rochester the values are <4 - >100.  I don't know if my doctor would consider a 12.6 increase from the normal range significant or not.

 

I can't state if I would be comfortable with the waiting six months, but I would be asking questions like:

Should we be trying to figure out why her tTg IgA is elevated ( if even only slightly) when only disorders and conditions like chronic liver disease, diabetes, crohn's, colitis, thyroiditis, and serious infection can cause the slightly elevated test result if it isn't Celiac?  Won't these conditions and disorders also cause long term health problems ( if not death) if not caught, or is it fine in 6 months to do that testing also?  One lab draw would at least rule out the liver disease, diabetes, thyroiditis, and infection.  Those would be the ones to worry about waiting 6 months for a diagnosis. Just my opinion.

 

I understand you wanting to wait since you have problems with the co-parent and I feel your pain and I am glad you are comfortable with it.  Thankfully when I called my ex to first tell him I wanted the kids tested he didn't fight me on it, and when I called him to tell him my 11 year olds test was positive he let me take the reigns and help him figure out to go gluten free( which I wish I wouldn't have done and waited until her tolerance test but I didn't know she needed one). I asked the GP if I should have her gluten free and he told me yes. I didn't now until the ped's GI called two weeks after her diagnosis to schedule an appointment that they want the endoscopy. The said we would discuss it at her appointment if they want her to do the challenge, by then it will have been two months for her gluten-free. I had a biopsy and blood drawn all on the same day and didn't know just how they went about it in patients that weren't in the hospital. But then again I think he gave in so easy since I have been sick for years and am slowly wasting away still even after a diagnosis, he sees it.

 

Good luck to both you and your daughter and Welcome to the club.  I hope you get the answers for her and it causes the least discomfort for her and in turn you.  It's rough to see your children sick.

[nvsmom]

I didn't reaize the upper limit of her lab was 15 - she's almost double the upper limit.... that's getting beyond slightly elevated

[beth01]

My thoughts exactly. 

[Christina.V]

Per the docs it's "slightly elevated" -- they are looking at >100 as being "highly elevated"

 

It's all in the interpretation I suppose!

[come dance with me]

If you reduce the gluten intake, that could also skew results.  I'd be keeping her on a full gluten diet and getting it done ASAP, that advice sounds absurd.