Could this mean celiac "lite"...?

[My_Dana]

We had Dana's second tTG test come back at 25mg/mL.
Down from 52 three months ago.

We have gone on a "gluten-lite" diet for the past month or so to see if it affected the following tTG.
Gluten lite (my own definition) is mainly gluten free, but still a piece of bread / pizza here and there. It apparently had some affect.

But I am in a quandary to pursue any further testing. With such a low value, seeing any villi atrophy will be extremely difficult, if even possible.
And I know they want you to still on gluten before the test.
I don't need a biopsy to tell me what is best for Dana. If it's gluten lite, then that's what it'll be be to keep her healthy.


Also, I would guess if the tTG was elevated solely from being T1 (we know it is possible for other autoimmune diseases), the number would have not changed with any dietary mods?

Any comments would be greatly appreciated!

[WestinsMom]

I will say that we "try" to be gf but for the first year, Westin would cheat a little. A piece of pizza, or whatever was tempting him. He would still go in for his once a year blood draw at the D clinic (they always test for endomysial antibodies) and come back with 20 (I assume the same test that you had done). I didn't let him "cheat" right before a test. We have never been concerned with cross contamination, but now we are not "cheating" and still getting those results. Westin chose not to cheat after two summers ago, he ate a slice of pizza and had diareah (sp?) for a week! Oh, correction, he did eat 2 regular cookies the other day with no known problem.

Anyway, with those numbers, they (the gi) wouldn't do a biospy. They want much higher numbers so that they think they can get a positive result.

Did I answer your question? If not, hit me over the head!

[My_Dana]

Hi Westinsmom,

Yes, very helpful.
Thank you!

I wonder what "normal" tTG is for non-celiacs?

I heard 20 is the upper limit, and 20-100 the "gray zone".
Above that, definite concerns.

Cheers.
Ed

[aklap]

Hi Ed,

Could there be a correlation with reduced gluten and reduced tTG scores - yes. Blood tests can start to normalize in a matter of weeks.

My question would be: Were the Anti-Gliadin Antibodies (both IGG and IGA) run and what where they? While these tests have fallen out of favor when it come to dx'ing CD [which is sad], they are still used for dietary compliance. These tests will give an idea if your body is reacting to gluten. It just another piece to the puzzle... I would call medical records and get a copy of the lab tests.

One other test that you might consider doing is a stool test thru EnterLab (https://www.enterolab.com/StaticPages/Frame_Faq.htm). It's a test you can order yourself. Again, it might give you another piece to the puzzle. Enterolab does not dx CD per se but rather Gluten Sensitivity. It'd be another way to tell if she's reacting to gluten. Be aware - Dr. Fine's tests are not widely accepted by the mainstream medical community - yet. He has not published any of his findings for peer review. However there are several other Gastros and docs in the know that do feel Dr. Fine's test are credible and valid.

I know many people that have had sx's - tested positive thru EnteroLab - went GF and had complete reversal of sx's.

Dana maybe in the grey zone at this point. Reacting, but not enough to show up in the radar yet - sub clinical. It's a tough spot to be [I know, I've been there]. It certainly would be interesting to do a full GF trial and run a Complete Celiac Panel (http://forums.glutenfree.com/viewtopic.php?t=217) to see what the numbers show.

As I'm sure you know, there can be no cheating on a GF diet. It's not like a diabetic diet where there's a bit of balancing that you can do. Gluten must be removed and stay removed. Continued exposure to gluten [while may not show outward reactions], still causes damage internally. Also for those with kids starting their teen years - reactions can go into "remission" during those years due to hormone production. It will come back later [late teens, early 20's] and rear it's ugly head.

Here's somewhat of an answer on "normal" results for tTG:

http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf

Follow Up Test #1:
tTG-IgA: This test result should be negative
The numerical value of the test doesn’t matter as long as the result is negative.

Follow Up Test #2
Anti-gliadin IgA: This result should have a very low negative value
In this case, the numerical value does matter, because a high negative test result still indicates that a patient is eating gluten. A low negative indicates that the diet is working well.

So, "normal" is whatever the range is that is set by the labs. Those normals are determined by law of averages I believe. Personally, I have a hard time drawing a line in the sand and saying X is OK, but X+1 is not OK. If it's in that upper region...there must be something going on. Then again...I'm not a doctor ;)


Good luck Ed and Dana. I hope you find the answers you're looking for!!

[My_Dana]

Hi Al,

Thanks for the great info. Big help!

Dana's anti-Gliadin were "normal" but I don't have a value.
So she doesn't appear to have any gluten sensitivities.
And her base IgA anti-bodies count are good.

I need to show the chart below to my Endo next time. It's from a test celiac test procedure I found.
So on it, if she tested positive for the EMA antibody, she would be in the CD - Highly Probable row.
The flow chart is quite clear as well.

http://aycu19.webshots.com/image/40538/2002834592933519066_th.jpg (http://allyoucanupload.webshots.com/v/2002834592933519066)
http://aycu19.webshots.com/image/40658/2002889642217003684_th.jpg (http://allyoucanupload.webshots.com/v/2002889642217003684)

[aklap]

Hi Ed,

Gosh - it sounds like they did run a complete panel. By "base IgA antibodies" I'm assuming you mean Total Serum IgA? This will make sure you are not IgA deficient. There's a large percentage of celiacs that are IgA defic. If you are defic. [not producing the IgA AB's], it will skew the IgA tests results - showing falsely negative. If IgA defic - IgG tests then must be run.

The EMA test would be used to rule out false positive tTG due to T1DM or other auto-immune issues - and put Dana in that Highly Probably category. Ugh - still is not a definitive "Yes you have CD" answer. Depending on the doc - I suspect it would be considered CD - depending on biopsy results. That's the key issue - villi damage - that's the gold standard.

[My_Dana]

Hi Ed,

Gosh - it sounds like they did run a complete panel. By "base IgA antibodies" I'm assuming you mean Total Serum IgA? This will make sure you are not IgA deficient. There's a large percentage of celiacs that are IgA defic. If you are defic. [not producing the IgA AB's], it will skew the IgA tests results - showing falsely negative. If IgA defic - IgG tests then must be run.

The EMA test would be used to rule out false positive tTG due to T1DM or other auto-immune issues - and put Dana in that Highly Probably category. Ugh - still is not a definitive "Yes you have CD" answer. Depending on the doc - I suspect it would be considered CD - depending on biopsy results. That's the key issue - villi damage - that's the gold standard.

Al,

Yes. The total IgA serum was normal only indicating the high tTG.
The AGA antibodies (IgA and IgG) were normal.
As for the test in the pic, this is NOT what Dana had done, but just a test I found that helped me understand the various antibodies in play.

So until the next Endo visit, we are still in limbo!

[MamaC]

Picking up on this thread late...my non-D daughter has celiac, dx'd 16 years ago by blood and biopsy.

I acted as the food cop for a lot of years. Once during high school her celiac numbers started creeping up and she was seriously anemic as a result. She got more diligent about her diet and everything resolved.

Her last blood tests (July, November, January) indicate serious non-compliance on the part of a college student. July celiac numbers were slightly elevated, hemoglobin was slightly low. November antibodies were astronomical (her dr. said higher even than when she was diagnosed) and her hemoglobin was still slightly low but her ferritin (stored iron) was critically low. Scary stuff for anyone, but particularly for an athlete. Having her home for most of the following 2 months, and being able to better police it, we saw an improvement in both the antibodies (significant but not yet normal) and the ferritin (100% better than November but still way below normal).

And now she's back at school where I suspect not only bad choices but serious cross-contamination from restaurants and dining halls.

So yeah, even a little gluten can have a big impact. Prolonged exposure just makes it worse.

Feeling a little insuted that she doesn't have the sense to maintain the good health we worked so hard to achieve.

Becky

[jacluc]

Just wanted to point out that if your child is celiac even gluten lite will do damage. Even with no outward symptoms it will still do damage internally. There are plenty of us in the celiac community who agree that a biopsy is not necessary when you see a positive response to the diet. But if there is a possibility that it is Celiac, you would have to be completely gluten free for your child to stay healthy.

[My_Dana]

Thanks to all for the info.

MamaC -
You mentioned your daughter's celiac antibodies going up and down.

I'm assuming it is the most commonly checked antibody - tTG.

Can you remember any of the values?

[MamaC]

I'm requesting copies of all her results...

Becky