Blood Tests

[nicolebeth]

Hello-

Husband had bloodwork in 2009, which was negative. Now that a second sibling of his has been diagnosed with celiac, he decided he should repeat the bloodwork, just to be on the safe side. Anyway, husband's PCP will order only the TtG and Total IgA (along with a complete blood count, including iron workup). The PCP has consulted a GI doc, and he's not ordering extra tests just to order them. Apparently, that test alone is 95% specific if celiac is present? That's what this GI told the PCP. (Our insurance would pay for whatever, but the PCP is not giving on this matter at all--it's been under discussion for a few weeks now.)

My question is: is the TtG, alone, enough? (He had asked for the DGP and EMA, as well as Vitamin D and B levels.) Three years ago the TtG was negative, and his Total IgA was completely normal. His siblings were diagnosed by very low iron levels during routine bloodwork.

Thank you!

(I have posted before about my now 7yo--his bloodwork and endoscopy were negative a few years ago, but we plan for his blood to be retested this fall due to increased symptoms.)

[GottaSki]

With the family history, he certainly should have a full panel - minimally tTG and DGP (it is possible for the DGP IgA or IgG to be positive before there is a positive tTG- which can mean Celiac Disease hasn't caused enough damage for the antibodies to be found in the tTG and EMA tests yet). It is my understanding that EMA can only be positive if tTG is positive (maybe someone else can confirm this).

If your doctor has already consulted with a GI that believes the Total and tTG IgA tests to be sufficient I doubt you will change their minds, but I would try one more time for at least the DGP AND more nutrient testing: minimally B, D, K, Iron and Ferritin. Have you found this primary to be proactive for other conditions -- how do I say this? Do you trust and feel comfortable with this doctor? If not, perhaps find another?

It is very sad, but not all gastroenterologist have solid - up to date - knowledge of celiac disease or celiac testing and far too many primary docs have no experience with celiac disease other than a brief lecture in med school.

Good Luck to your family

[nicolebeth]

With the family history, he certainly should have a full panel - minimally tTG and DGP (it is possible for the DGP IgA or IgG to be positive before there is a positive tTG- which can mean Celiac Disease hasn't caused enough damage for the antibodies to be found in the tTG and EMA tests yet). It is my understanding that EMA can only be positive if tTG is positive (maybe someone else can confirm this).

If your doctor has already consulted with a GI that believes the Total and tTG IgA tests to be sufficient I doubt you will change their minds, but I would try one more time for at least the DGP AND more nutrient testing: minimally B, D, K, Iron and Ferritin. Have you found this primary to be proactive for other conditions -- how do I say this? Do you trust and feel comfortable with this doctor? If not, perhaps find another?

It is very sad, but not all gastroenterologist have solid - up to date - knowledge of celiac disease or celiac testing and far too many primary docs have no experience with celiac disease other than a brief lecture in med school.

Good Luck to your family

Thank you. I've never met the doctor, myself. So, it's hard for me to say. (I go somewhere else!) I've tried to sell him on the idea of moving to where I am, but he hasn't done it yet. Perhaps this is the impetus he needs. My PCP would at least order the EMA. When I had the tests (negative) in fall 2010, the DGP had just come out so I could see why she didn't order it for me.

Also, I didn't realize the purpose of the DGP might be to find out whether there is damage that wouldn't show up on the tTG yet. I hope that the blood count (and iron) would include ferritin. I know that my husband listed all the others to his PCP (B, D, and K). I just can't understand why a doctor would feel so strongly about not ordering a few extra vials of blood--how much more non-invasive can you get?

[MitziG]

Well, if the doc isn't up to date on what tests should be done, he isn't going to be up to date on treating a celiac either. Perhaps pointing that out to your husband will be enough to motivate him to switch docs.

[GottaSki]

Also, I didn't realize the purpose of the DGP might be to find out whether there is damage that wouldn't show up on the tTG yet.

Not damage per se - as far as I know a positive deamidated gliadin peptide DGP test only lets you know that the body is creating antibodies to a peptide that is specific to gluten. The question then becomes why is the body is making antibodies?

More important to analyzing any one test is that someone that is a first degree relative without symptoms (siblings, children, parents) should all be tested every 3-5 years with a full celiac panel - IgA and IgG. Testing should be more frequent if symptoms develop. There is no reason to limit this panel to a test or two.

[nicolebeth]

Not damage per se - as far as I know a positive deamidated gliadin peptide DGP test only lets you know that the body is creating antibodies to a peptide that is specific to gluten. The question then becomes why is the body is making antibodies?

More important to analyzing any one test is that someone that is a first degree relative without symptoms (siblings, children, parents) should all be tested every 3-5 years with a full celiac panel - IgA and IgG. Testing should be more frequent if symptoms develop. There is no reason to limit this panel to a test or two.

Good points. I know that it doesn't make any sense to me why the PCP wants to limit the testing. He is planning to be rechecked every few years. His parents may go in as well; they know that, with two kids confirmed, it probably came from one of them.

Now, I checked over the health records from three years ago, and on the gliadin AB, my husband got a 2 (reference range was blank--which means 0, I think?) Anyway, that was the only one with any response. That is similar to what the DGP test does? Checks for antibodies? His antigliadin was 0.

Thank you.

[nicolebeth]

Well, if the doc isn't up to date on what tests should be done, he isn't going to be up to date on treating a celiac either. Perhaps pointing that out to your husband will be enough to motivate him to switch docs.

He just doesn't go to the doc that often, fortunately, so it hasn't been an issue. But, he's certainly considering, now, though would like to try to have at least one further conversation with him about this.

[shadowicewolf]

Just a tid bit of info, i was diagnosed with a positive IGA tTG, normal of the DGP and IGg. In addition to this i tested positive with both genetic markers, as well as responding positively to the diet. Biopsy was negative.

I think it is more of a case by case basis.

[GottaSki]

Just a tid bit of info, i was diagnosed with a positive IGA tTG, normal of the DGP and IGg. In addition to this i tested positive with both genetic markers, as well as responding positively to the diet. Biopsy was negative.

I think it is more of a case by case basis.

Exactly - that's why the whole panel is important - we all test differently - a positive to any of them along with either family history &/or symptoms is important info.

I believe this doctor thinks he is doing the correct thing, just doesn't have a good understanding of the necessity of the whole panel.

I remain hopeful that testing will become far more common place - took decades for docs to even consider Celiac Disease in me and it was after three years of ruling out every random disorder known to science! Eventually all doctors will know to check for Celiac in patients with a variety of symptoms - one can dream, right

[frieze]

money, the bottom line. whatever you want to call it. good luck