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How Important Is Official Diagnoses?

suzischepers

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suzischepers Newbie
suzischepers
Posted

I'm sure this is posted somewhere but I haven't found it yet and don't have a lot of time to keep looking. 

 

I recently posted about my 1 1/2 year old possibly having Celiac Disease. Now I am wondering, how important is it to have an official diagnoses? When I was tested, I had 1 positive genetic marker. And with all her symptoms, I'm fairly confident my daughter has it.   If her current doctor doesn't think she needs to be tested, would it be okay for me to put her on a gluten free diet and see if there are any improvements? Or is it important enough for me to find another doctor to specifically test for Celiac for an official diagnoses?  If she does need to be tested, I know she should not be on a gluten free diet but I also want to do anything I can to help her feel better sooner than later. 

 

I hear varying opinions such as you don't want an official diagnoses for insurance purposes, it's not healthy to be on a gluten free diet if you don't need to be, etc. and would love to know how important an official diagnoses really is. 

 

Thanks! 

 

 

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tarnalberry Community Regular
tarnalberry
Posted

A gluten fee diet is inherently no more unhealthy than a gluten filled diet - how healthy it is all comes down to the choices you make.

As a child, I think diagnosis is important. It's needed for working with some schools, and may be needed for getting optimal care from your doctor. But I don't think that a child's health should e held hostage to the ability to get a full diagnosis. So, for me, I would fight like hell, with more than one doctor, to get testing. But if I couldn't get anyone to even draw blood by six months into the process, I'd take my kid gluten free and deal with it again later.

But there are a lot of doctors in the world, and the chances that all of the ones within a data drive of you would refuse to test even if you went out of pocket are low.

stanleymonkey Explorer
stanleymonkey
Posted

With young children the testing is very unreliable, our ped told us to stop with the testing route with my youngest and diagnosed celiac based on symptoms, and the fact her sister had the genes for celiac disease.

We went through hell trying to find out what was wrong with her sister, and got an official diagnosis of reflux.

An official diagnosis can be useful for school etc, and even medical insurance if you have to get specific meds to ensure they are gluten free. That being said in toddlers testing is often unreliable and some doctors seem so uninformed. Maybe someone in your area on this forum might be able to recommend a good doctor who is well informed, if you have a good doc the process hopefully will be easy

mamaw Community Regular
mamaw
Posted

Not  knowing  where  you  reside, look for a  children's  hospital  for  advice.... I can say  our  grandchild  was  2 1/2 when  an  endo  was  performed along  with  blood work....The  kid  now  is  12  & an  honor  student. Still 100% gluten-free....

I  feel  like Tarnalberry  that documentation is  VERY important for  kids.... I  stress  that  at  our  gluten-free   meetings. I  will say  it is  very hard to take kids  off gluten  for  several years   only  to have  a  school  or  doctor  insist  the  child  be  tested  for  celiac to  get  a   gluten-free school  lunch  &  also  to be  able to opt  out  of  cooking  classes due  to a  flour  laden  room when  that  child  reaches  middle  school...Elementary  school  teachers  are  always giving  kids  treats in the  classroom   for  one  reason or  another  plus  the  parties....If  you have  no  documentation then  they  can do as  they  please.....

The  other  side of the  coin  if  the  child is  sensitive  to gluten  there is  no  test for that  just an  elimination  diet...I  think  that  needs to    be  the  next  thing  to  be  addressed so  we  have  a  universal  policy....

I  don't  think  I could  put  a  kid  through  going  back on  wheat  after  they  got  better  being  off of it for  several years...

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