Frustrated With Co-Parent

[Christina.V]

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.

[kareng]

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.

[notme]

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  

[Christina.V]

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

[StephanieL]

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.

[dilettantesteph]

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.

[Christina.V]

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!

[nvsmom]

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: Open Original Shared Link

 

This discusses how a diagnosis can be made: Open Original Shared Link

 

Another paper discussing the accuracy of tests: Open Original Shared Link

 

This discusses how helpful symptoms are in diagnosing kids (not very): Open Original Shared Link

 

More info and tables: Open Original Shared Link

 

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

[Christina.V]

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: Open Original Shared Link

 

This discusses how a diagnosis can be made: Open Original Shared Link

 

Another paper discussing the accuracy of tests: Open Original Shared Link

 

This discusses how helpful symptoms are in diagnosing kids (not very): Open Original Shared Link

 

More info and tables: Open Original Shared Link

 

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. 

[Christina.V]

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.

[BlessedMommy]

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. 

[Christina.V]

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. 

[BlessedMommy]

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

 

Open Original Shared Link

[kareng]

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.

[Christina.V]

That article talks about NCGS - not Celiac disease.

 

Which article are you referring to?

[kareng]

Which article are you referring to?

YOU said he came up with something that was all over the news about a study saying there was no celiac. It was referring to NCGS, not celiac. He may not know the difference.

[nvsmom]

It was probably one of these articles on non-celiac gluten sensitivity (NCGS) that  he saw:

 

Open Original Shared Link

 

Open Original Shared Link

 

It doesn't look like a really well done study, IMO.

 

Good luck with him at the doctor's office.

[DinaZ]

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.

I have also heard that some people have no symptoms. My daughter was just diagnosed and the rest of us are going for our initial blood work.

[Christina.V]

Thanks for the advice! The doctors at Children's think that we should hold off on any endoscopy/biopsy until her symptoms either worsen or for 6 months when we will repeat the TTG IgA. They fear that if we do the procedure it will come back with a false negative. Although she is currently testing positive (27.6) it's not elevated enough to worry. So for now she will eat gluten-free when she is with me and her dad can do whatever he wants. 

 

 

[StephanieL]

If you are going to reevaluate in 6 months for blood work, it can also be falsely negative if you take her off gluten.  I would seriously consider a call to the Dr. to see if that is a wise choice.

[Christina.V]

If you are going to reevaluate in 6 months for blood work, it can also be falsely negative if you take her off gluten.  I would seriously consider a call to the Dr. to see if that is a wise choice.

 

Yes, we did discuss that. I should have said that at home we will eat gluten-free, but not strictly enforce it when at friends and families or eating out. I am simply not going to have gluten in my house so therefore she won't get it there. 

[nvsmom]

6 months is a long time to eat gluten for a celiac.  Would it be possible to eat gluten everyday and then retest at 8-12 weeks? Get all the tests done, especially the tTG and DGP ones? 

 

That's just so long to not feel well...

[Christina.V]

6 months is a long time to eat gluten for a celiac.  Would it be possible to eat gluten everyday and then retest at 8-12 weeks? Get all the tests done, especially the tTG and DGP ones? 

 

That's just so long to not feel well...

 

Fortunately she doesn't feel sick every day. And I don't intend to have gluten in my household. She's pretty vocal about when she's not feeling well! In fact, she was the one who prompted the initial dr visit. If her symptoms do get worse, then I'll persue the EGD and biopsy for sure. The doctors at Children's were in agreement in spite of the opposition from the co-parent.

[nvsmom]

 

Fortunately she doesn't feel sick every day. And I don't intend to have gluten in my household. She's pretty vocal about when she's not feeling well! In fact, she was the one who prompted the initial dr visit. If her symptoms do get worse, then I'll persue the EGD and biopsy for sure. The doctors at Children's were in agreement in spite of the opposition from the co-parent.

 

I'm glad she doesn't feel sick everyday... my concern is that if she is getting gluten every few days, or once a week or so, even in very small amounts (like a cheerio) she will still have an autoimmune reaction (if she is indeed celiac disease as the test seems to indicate) and that will cause systemic inflammation (not bloating) that will affect her health over time even if she has very few symptoms.  

 

Celiac symptoms do not correlate to the degree on damage in the intestines (especially in the early years) nor to the level of autoantibodies found in the blood. There are celiacs without any symptoms who have sky high numbers and a scary biopsy, and yet other celiacs have life threatening complications even though they had weakly positive tests. Unless a patient has chronic liver disease, diabetes, crohn's, colitis, thyroiditis or a serious infection, there are no other causes of a weakly positive tTG IgA besides celiac disease, and celiac disease causes between 91 and 99% of all positive tests. (see page 12 of this report for tTG IgA's specifity) Open Original Shared Link

 

I think I was a celiac since early childhood. My symptoms were some stomach aches after some meals, constipation and "growing pains". Doctors said it was just the way it was and to keep an eye on it if it got worse - it did not get noticeably worse, or rather it did but it was too insidious to notice.  Anyway, I was at the 100th percentile for height, had A's in school and played on multiple sport teams. As I got older I started getting headaches too but still did very well and worked part time too.  When I turned 18 I developed an autoimmune blood disease, that is thought to have been triggered by undiagnosed celiac disease, and it nearly killed me - I was critical for weeks.  I recovered but then I developed arthritis symptoms in my early twenties as well as symptoms of hypothyroidism. Doctors said to wait and watch it... we did wait (and retest and retest) for almost 15 years until my labs finally agreed that it was time to treat me. During that time my health steadily became worse and I am now at the point that I doubt I will get any better.

 

I mention all this because I would hate for her health to slowly decline if it doesn't have to. I know it's not entirely up to you and you have a tough situation, but I would push to reassess her sooner (at 2-3 months or so) after a full gluten challenge, or remove all gluten from her diet and see how she does over the next few months.  Eating gluten-light won't tell you much and it will keep her unhealthy if she is a celiac... And it won't help her biopsy show up positive - the only reason I can see to worry  a biopsy would show a false negative (so they should test later) is that they suspect it is celiac disease but they want her to damage her intestines longer so it will show up better in the biopsy after eating gluten for a longer period.... The doctors statement to wait does not make any sense to me. I see no benefit at all in waiting.

 

I apologize for this sounding like a nag, I know it does... I just want you to understand what delaying testing 6 months, and waiting even longer to start the gluten-free diet, could mean.

 

Best wishes to you and your daughter.

[DinaZ]

Fortunately she doesn't feel sick every day. And I don't intend to have gluten in my household. She's pretty vocal about when she's not feeling well! In fact, she was the one who prompted the initial dr visit. If her symptoms do get worse, then I'll persue the EGD and biopsy for sure. The doctors at Children's were in agreement in spite of the opposition from the co-parent.

It seems like your daughter's father needs some serious education on this topic. Being gluten free in your home and not in her father's home is like not being gluten free at all. I'm no expert as my daughter's biopsy was just confirmed yesterday and I am learning about this disease but I did read that Celiac, if not treated will negatively impact health as the person gets older.