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Frustrated With Co-Parent


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#1 Christina.V

 
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Posted 06 May 2014 - 03:30 PM

I haven't been formally diagnosed yet (endoscopy is May 14) and neither has my 6 yr old daughter. However, my doctor indicates my tests results are fairly conclusive. My daughter tested positive just last week after I forced a switch in pediatricians in order to get her tested.

 

Her father (ex-husband) keeps telling me her TTG IgA test that came back positive has a "VERY" high rate of false positives and that it's likely that she isn't sick at all. However, everything I'm reading states that it's 95-96% accurate. The Dr. yesterday told me that false negatives happen way more frequently. The dad is telling me that he will REFUSE to change her diet without a biopsy, and even then those have a high rate of false positives as well. That leads me to believe that even when/if she is formally diagnosed that he won't change her diet until she starts having major major health problems.

 

I have no idea where he could be getting his information from! And when I ask him for websites and links he just ignores me. Does anyone have ideas on website that provide reports that show testing is inconclusive or there are high rates of false positives? I want to understand where he is coming from, but his history makes me think he is just saying whatever he wants to say regardless of actual facts.


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#2 kareng

 
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Posted 06 May 2014 - 03:48 PM

You know him better than we do, but I bet he is just making this up. Sounds like he wants either to do the opposite of what he thinks you want or he is just lazy? Or in denial?

You can go to the Univ of Chicago Celiac center website and show him some info. Hopefully that will help.

If he refuses to feed her gluten-free and she is diagnosed by a docotor, it is medical neglect of a minor. You may have to report him to Child protective services.
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#3 notme!

 
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Posted 06 May 2014 - 03:50 PM

there is a high rate of false negatives with the blood testing.  it sounds like he just doesn't want to make the effort........... :(  why would you wait for your kid to be sick to correct her diet.  geez.  plus, if she has celiac, she is not absorbing the nutrients she needs for her body/brain to grow and develop.  

 

time for you to get armed with some info, mama   <_<


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#4 Christina.V

 
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Posted 06 May 2014 - 04:00 PM

You know him better than we do, but I bet he is just making this up. Sounds like he wants either to do the opposite of what he thinks you want or he is just lazy? Or in denial?

You can go to the Univ of Chicago Celiac center website and show him some info. Hopefully that will help.

If he refuses to feed her gluten-free and she is diagnosed by a docotor, it is medical neglect of a minor. You may have to report him to Child protective services.

You hit the nail on the head. I think he just wants to do the opposite of what I want. He didn't want to get either of my kids tested even though it's genetic. This year our PCP closed their practice so we went to his PCP, who originally refused to test because they were asymptomatic. For many reasons, I decided that Dr. wasn't a good fit so I switched and the new ped ran the test. Dad said I was manipulating the new Dr. and this was all just a ploy for me to have a Dr. I could "control." Effing CRAZY.

 

When/If she is diagnosed I will force the change in diet or I will take full custody of her AND report him.

 

What's even stranger is that he has ulcerative colitis! Why in the world he hasn't changed to gluten-free makes absolutely no sense to me. /rant


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#5 StephanieL

 
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Posted 07 May 2014 - 05:18 AM

I'm sorry you are having a rough time with this. I would caution you against making this a huge deal right now. Until you have definitive proof of an issue, I would drop it for now.  If she does have Celiac then I would recommend making an appointment for him to go to or at the very least a document confirming the dx written by the Dr. to him.

 

It's very unlikely that any court would give you sole custody based only on a dietary issue. I have seen several times people try that and it never ends the way parent #1 wants and ends up being very expensive in the long run with not a lot of results :(  I wold work at it from an education standpoint.


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#6 dilettantesteph

 
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Posted 07 May 2014 - 05:30 AM

I work very hard at solving this issue in a non confrontational way.  This is your child's father and she will need his support with the medical condition and diet throughout her childhood.  It will probably take all the patience that you can muster.  The consequence for not doing this may be him accidentally making her sick every time he sees her.

 

I get very frustrated with my co parent too.


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#7 Christina.V

 
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Posted 07 May 2014 - 08:04 AM

Thanks for the advice. You're correct, I am jumping the gun a bit. The Momma Bear in me gets a little worked up sometimes! 

 

I really am trying to see things from his point of view. The whole reason I posted was to see if there were any conflicting websites out there that say the testing isn't accurate, etc. I guess I was thinking about the vaccination debate and maybe there's something I'm not hearing about.

 

Time to take a deep breath. And stop talking to him until the appt. Or at least not talk about this subject until then. Ha!


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#8 nvsmom

 
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Posted 08 May 2014 - 07:11 AM

I like this report from the World Gastroenterology Organisation.  Testing is discussed on pages 8-12, with a testing chart for sensitivity and specificity (which is the one he is arguing) on page 12: http://www.worldgast..._long_FINAL.pdf

 

This discusses how a diagnosis can be made: http://www.curecelia...112_v4-link.pdf

 

Another paper discussing the accuracy of tests: http://www.jfponline...tt_news]=172034

 

This discusses how helpful symptoms are in diagnosing kids (not very): http://pediatrics.aa...2-3765.full.pdf

 

More info and tables: http://cvi.asm.org/c...16/11/1576.full

 

Good luck. I hope he stops fighting you and realizes that his child's health isn't a battlefield.  :(


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#9 Christina.V

 
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Posted 08 May 2014 - 02:55 PM

I like this report from the World Gastroenterology Organisation.  Testing is discussed on pages 8-12, with a testing chart for sensitivity and specificity (which is the one he is arguing) on page 12: http://www.worldgast..._long_FINAL.pdf

 

This discusses how a diagnosis can be made: http://www.curecelia...112_v4-link.pdf

 

Another paper discussing the accuracy of tests: http://www.jfponline...tt_news]=172034

 

This discusses how helpful symptoms are in diagnosing kids (not very): http://pediatrics.aa...2-3765.full.pdf

 

More info and tables: http://cvi.asm.org/c...16/11/1576.full

 

Good luck. I hope he stops fighting you and realizes that his child's health isn't a battlefield.   :(

 

 

WOW Thanks!!! I have seen the first link but not the others. The one on changing protocols for diagnosing children is great. 


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#10 Christina.V

 
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Posted 21 May 2014 - 02:12 PM

Today the Co-parent told me that if I'm not having GI symptoms then there is NO REASON I should be gluten-free. (I was diagnosed just a week ago).

 

He went on to say that there's some study out there that supports this. Does anyone know what he could be talking about? I personally think he's making it up, but again I want to do anything possible to support my kids and their needs. I think that means being informed of possible contradicting studies.


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#11 BlessedMommy

 
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Posted 21 May 2014 - 02:27 PM

That is not true. It's a fact that celiac can present in many ways other than GI symptoms. Some celiacs have no symptoms and end up slowly and silently dying. 


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#12 Christina.V

 
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Posted 21 May 2014 - 02:30 PM

That is not true. It's a fact that celiac can present in many ways other than GI symptoms. Some celiacs have no symptoms and end up slowly and silently dying. 

 

Thanks for the reassurance. My daughter has her initial consult with a pediatric celiac specialist tomorrow. I pray that the Doctor can talk some sense into him. 


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#13 BlessedMommy

 
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Posted 21 May 2014 - 02:36 PM

Would your co-parent be swayed by University of Chicago research? They are the experts afterall.

 

http://www.curecelia.../guide/symptoms


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#14 kareng

 
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Posted 21 May 2014 - 02:43 PM

Today the Co-parent told me that if I'm not having GI symptoms then there is NO REASON I should be gluten-free. (I was diagnosed just a week ago).
 
He went on to say that there's some study out there that supports this. Does anyone know what he could be talking about? I personally think he's making it up, but again I want to do anything possible to support my kids and their needs. I think that means being informed of possible contradicting studies.


That article talks about NCGS - not Celiac disease.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#15 Christina.V

 
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Posted 21 May 2014 - 03:58 PM

That article talks about NCGS - not Celiac disease.

 

Which article are you referring to?


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