Celiac or not?

[Rachel171]

One gastroenterologist  at Kaiser said I tested positive so I have Celiac, I ran the results by my daughter's doctor today and he said I do not have Celiac and that he thinks the IgG test shouldn't even be used anymore.  I am so confused as to whether or not i have it.  I am being tested because my daughter was diagnosed with Celiac recently.  
Here are my results:

TISSUE TRANSGLUTAMINASE IgG	1.44 Index	<=0.90 Index
Tissue transglutaminase IgA	0.33 Index	<=0.90 Index

I would really appreciate any input you have.
Thank you!

 

 

[cyclinglady]

Your GI is right and your daughter's doctor is wrong!  You have a positive.  DId they run a an IGA deficiency test?  It is a control test that  tells the doctor if the IGA versions of the test is accurate.  Ask your GI (not your PCP to run the complete celiac panel.  PCP doctors at Kaiser can not order the complete celiac panel.  You had just the screening.   I suppose your GI might have skipped the IGA deficiency test since he ordered both the TTG tests.  

Personally, I had a positive on just the DGP IGA and all then rest were negative yet I had moderate to severe intestinal damage. What I am saying is that it took just one positive!  

i would make sure even your GI is celiac savvy.  The Kaiser website doctor directory will give a bio.  Make sure the doctor you are working with states that he specializes in Celiac Disease.  If he is not, try to find another GI.

so, request the entire panel, then ask for an endoscopy making sure they take at least four tissue samples.  

Here is a link to the University of Chicago's celiac website for more info:

Sorry, you are going to have to google it.  

[cyclinglady]

Oh, how did your daughter test out?  Was her TTG IGG positive too?  

[Rachel171]

13 hours ago, cyclinglady said:

Oh, how did your daughter test out?  Was her TTG IGG positive too?  

They didn't give me the detailed results for my daughter.  They just said her number was really high at 64.  I'm trying to get a 3rd opinion at Kaiser but they don't make it easy.  I have to make and appointment weeks out and come in to talk with another doctor.

[cyclinglady]

2 hours ago, Rachel171 said:

They didn't give me the detailed results for my daughter.  They just said her number was really high at 64.  I'm trying to get a 3rd opinion at Kaiser but they don't make it easy.  I have to make and appointment weeks out and come in to talk with another doctor.

Well, due to HIPPA, Kaiser probably is not going to give you your daughter's results.  But she should have those on her website page (Patient portal)  and can share them with you.  I was just curious.  

In any case, you should move forward to an endoscopy (you can push too for the complete celiac panel and ask why they did not test you for an IGA deficiency).   I assume your daughter is getting or had one.  What was her result?  This is critical in getting a proper diagnosis.  Some folks have to skip this step due to financial reasons or extreme illness, but you have Kaiser and they should be able to do it.  Again, find a celiac savvy GI doctor within Kaiser.  

Read this link about what the American GI Association recommends for diagnosing celiac disease.  Make a copy and ask why Kaiser is not following procedures (maybe they are and you are confused).

Open Original Shared Link

 The University of Chicago is another excellent source.  Arm yourself with information and knowledge.  Ask for things nicely and DOCUMENT everything using your patient portal.  I follow-up with an email each time I see my doctor and repeat the plan of action or review what was discussed.  

Keep eating gluten until the test results are in from the biopsies (four to six samples).  Get the endoscopy.  They will not only diagnose celiac disease but rule other other things like cancer, h. pylori, SIBO, etc.  It's a good measurement to have.  Keep all records!!!!!

Take care!  

 

[frieze]

i am thinking the daughter is a minor child?  guardian should have access?

[cyclinglady]

35 minutes ago, frieze said:

i am thinking the daughter is a minor child?  guardian should have access?

Guess what?  My kid is 15 and I can no longer access her records even though she signed a waiver/authorization form two years ago for the patient portal.  Had to get her recent lab results via snail mail.   No time to deal with the portal.  Geez, we pay the bills but it is the law!  

[Gemini]

1 hour ago, cyclinglady said:

Guess what?  My kid is 15 and I can no longer access her records even though she signed a waiver/authorization form two years ago for the patient portal.  Had to get her recent lab results via snail mail.   No time to deal with the portal.  Geez, we pay the bills but it is the law!  

That must be a California law because here in Massachusetts, it's 18.  15 is ridiculous......you're her mother!