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  Almost all of the responses I got were from people who had experienced trying to get their own kids/close relatives tested, and how frustrated they were.  Almost everyone had additional suggestions that fell into the following categories:
   
  More Assertive
  Not A Good Doctor/ Get a new doctor
  Pamphlets/ Fact Sheets/ Web Sites
  NIH
  Recent Article from the NEJM/ Dr Greene
  Stool Test
   
  One additional source which I found useful is UpToDate, which is an information service subscribed to by some medical schools and medical practices.  I would recommend looking at it, for anyone who has access to it.
   
  Being more assertive is not the issue- I am plenty assertive and know my facts, but the Dr is trying to politely indicate that he is not willing to “go out on a limb”, which is a typical reaction from Drs when they are out of their own comfort zone.  My position now is that when he is faced with information about standards of practice, he either will or will not order the tests.
   
  As for how good a Dr he is/isn’t, I am not necessarily going to be able to find another Dr who is any better, so I would rather try to get somewhere with this one, if I can.  My daughter is not sicker than %$*, which seems to be one of the diagnostic criteria for celiac disease here in the USA.
   
  Regarding Pamphlets/ Fact Sheets/ Web Sites, this guy will not respond to that kind of stuff.  However there are some good citations, so I may be able find some good primary sources that way.

   
  I searched the NIH website, I could not find the long PDF article that was generated at the celiac disease symposium they had a few years ago.  That was a very interesting article, if anyone has access to it.  I found the following site, which seems promising.
  http://celiac.nih.gov/PracticeTools.aspx
   
  Several people recommended articles written by Peter Greene, and/or information from the website he is involved with.  His writing is very good because it is not too dense.  
   
  The most common recommendation is the stool tests at Enterolab.  While these may be the most accurate overall (I personally don’t know one way or the other), they are not readily accepted in a court of law or by the medical establishment. A test that could possibly be considered “iffy” in any way by my daughter’s dad and/or my and his families and/or her school and/or any run of the mill MD who might be involved, is pointless at this juncture.   Why get testing if I am not going to be able to follow up on the GF diet part?
   
  Even though I am a diagnosed celiac, and have some spectacular and undeniable episodes of gluten poisoning to point to, my ex thinks my own disease is me “making the whole thing up just to be a pain”.   I can ignore him and make my own decisions, but the same is not true for our daughter, so I must proceed carefully.
  

Sarah Le Tard

There are only two kinds of people in this world- those who make gross over-generalizations, and those who don't.
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