Continue With Testing, Or Stop?

[ThisGalsGlutenFree]

I finally got my mom to go for celiac disease blood testing because of my own diagnosis. I gave her the following panel, and told her to be specific with her doctor, and request these tests:

 

Tissue Transglutaminase IgA & IgG

Endomysial Antibody IgA

Deaminated Gliadin Peptide IgA & IgG

Immunoglobulin A, Quantitative

 

Her gastroenterologist assured her that he would run these tests, but when she got her results back, he only ran these two tests with the following results:

 

Tissue Transglutaminase AB, IgA  <1 U/mL  (<4 no antibody detected)

Immunoglobulin A  146 U/mL  (81-463)

 

She tested negative. I researched and found that the test the GI ran is a highly specific test, and is often used for people who have, because of a relative with celiac, a higher risk of having the disease.

 

My mom does not have symptoms of celiac, but I pushed for her to be tested because of my diagnosis. Should she insist on a more extensive panel, including the first set of tests I listed above? When I was diagnosed, it was on the basis of a positive TTG IgG test; I do not have an IgA response to gluten, I have an IgG antibody response to gluten. Does it follow that my mom could be the same?

 

I want to get this right. I'm still working on my dad, trying to get him to go in for testing. He's the one that I think actually has celiac, and when he goes, I want to be sure that all the right tests are run.

 

Thanks!

 

 

[cyclinglady]

My only positve on the full panel was the DGP IGA. Like your mom, my mom tested negative. I found out that her doctor only ran the typical screening of TTG IGA and the iga deficiency test. I have copies of my test results (right now, printed today) and am mailing them to my mom and asking her to get the DGP tests. I bet I am not the only person in my family to test out negative to the TTG and yet have a Marsh Stage IIIB biopsy. There are other family members who also tested negative yet they have celiac disease symptoms. Hopefully, with my lab results in hand, their insurance will cover it.

I was recently glutened and my GI doc ran the panel. Yep, my TTG was still negative but my DGP IGA was the only Positive.

[supermaltese]

My symptoms aligned perfectly with Celiac's but fluconazole for 2 months seems to have cured me.  I believe it is also possible for toxins in the liver to cause Celiac-like symptoms.  Those may be worth checking into.

[frieze]

i would be having a not so nice discussion with the doc who lied about doing all the tests....

[ThisGalsGlutenFree]

Cyclinglady, I like the idea of sending my test results in as proof that not everyone with celiac has an IgA response. This is a great first step to getting the correct testing for my parents.

 

Supermaltese, thanks for responding about your solution; IF I ever get my dad to go in and he tests negative, that gives us another avenue to pursue.

 

And frieze, I just can't understand the dishonesty on the doctor's part; if you don't agree with the panel, say so, but please don't say you'll do something you have no intention of doing.

[cyclinglady]

I belong to Kaiser and am a new member. They did not diagnosis me. When my Mom's results came back as negative (my whole family lives out of state) and I became a member, I asked my PCP what tests are ordered if someone comes in asking to be tested for celiac disease. She stated just the TTG IGA and the IGA deficiency test. Then I got glutened (bad) and went in for testing. I asked for the DGP IGA test and my doctor was not even authorized to order it (just the TTG)! I had to get a referral to a GI doctor. Not bad, since I needed to establish a relationship anyway! He was able to order the complete panel. Yes, my DGP was highly elevated and once again, my TTG was negative. That is another story!

In defense of Kaiser, they take the herd approach in an effort to reduce costs and provide as much care for their patients. If anyone reading this gets a negative result just on the TTG and you have strong symptoms of celiac disease (intestinal issues, anemia, etc.), ask for the rest of the panel before you give up! This is actually recommended by the leading research experts and the British and American GI Associations. Be nice but be persistent. You are your best healthcare advocate!

My results are odd per my doctors but I figure that the rest of my family might test the same way too. So, I mailed off my results (my folks would freak if I sent them electronically !). They can hand them off to the rest of my family.

Hopefully for those who have tested negative, they can get their insurance to authorize the complete panel or just pay cash.

Getting a celiac disease diagnosis is not easy!

[nvsmom]

I would get those other tests run if possible.  The tTG IgA can miss up to 25% of all celiacs even if they are not IgA deficient (like Cyclinglady).  Getting more tests done is important unless they are going gluten-free anyways.

 

Page 12 of this report shows the sensitivity of the various tests.Open Original Shared Link 

 

Eating gluten-free or taking steroids (corticosteroids, etc) will also cause a negative test results.

 

Good luck.