Interpreting Celiac Testing Results

[Pale Phoenix]

Hello,

I have been struggling with symptoms of Celiac Disease for over a year now. Like so many others, I have been to several doctors and still have no answers. One doctor said I "possibly" had Celiac Disease, although admitted that she didn't know a lot about it. My primary care physician said that I don't have Celiac Disease, but suggested that I "might" have a gluten intolerance and said I may want to avoid gluten anyway.

Here are the results from the blood panel I had done back in July of 2010 (note: I had not been eating gluten for almost a month at the time of the test, and my symptoms were beginning to resolve)...

Immunoglobulin A, Serum - 68-378 || 186

Tissue Transglutaminase AB, IGA - 0-19 || 3

Gliadin Peptide AB, IGA || 0

Gliadin Peptide AB, IGG || 4

Tissue Transglutaminase AB, IGG || 4

I have no idea what these results mean, and I have no idea where to go from here. For lack of better direction, I have been limiting (but not completely eliminating) gluten from my diet. My symptoms have been persisting, with perhaps the biggest issue being a lingering feeling that something is just not right. My doctor seems to think that I'm making this up or exaggerating and has been quick to dismiss the symptoms as side-effects from my anti-depressants (which I have recently gone off of... symptoms still persist). Can anyone offer any ideas?

Thank you!

- Jenna

[Skylark]

Your test results are probably not not celiac, although you haven't posted the reference ranges of the gliadin peptide IGG and Tissue Transglutaminase. A reading of 4 is usually pretty low.

Thing is, people with non-celiac gluten intolerance can be every bit as gluten-sensitive and sick as celiacs. You also may have a false negative from not eating gluten, or you could be one of the many celiacs who doesn't have antibodies in your blood. After all, the problem is in your intestines. Celiac bloodwork is false negative 20-30% of the time.

You need to go off 100% of the gluten. Get rid of it completely and totally and see if you feel better. It takes only traces for those of us who are highly sensitive to completely keep you from recovering. Trust yourself, don't listen to your doctor about diet. Doctors are trained to push pills, and they know precious little about food sensitivities.

[ravenwoodglass]

Here are the results from the blood panel I had done back in July of 2010 (note: I had not been eating gluten for almost a month at the time of the test, and my symptoms were beginning to resolve)...

- Jenna

If you were not eating gluten for the month before those tests were done you can not go off the tests as we need to be eating a full gluten diet for testing. Even then false negatives are not uncommon.

Since being gluten free for a month was resolving your symptoms you have two choices, you can go back to eating a full gluten diet with at least 3 to 4 slices of bread a day for a couple of months and then get retested or you can so strictly gluten free for a few months and see if your symptoms significantly resolve.

Personally I would do the latter. If you do choose to go back on gluten for retesting you may find that within a week or so your symptoms are back full force. That in itself is diagnositic IMHO.

[nora-n]

Yes, this is an example of low numbers on the blood tests after going gluten free before testing.

Note that the numbers were not 0.

One should get tested before going gluten free.

Some people who recently went off gluten choose to pay for the Enterolab tests, which are designed to pick up gluten sensitivity (not celiac, for they are more sensitive)

That way they get something on paper, and are less prone to go off the gluten free diet later for lack of proof.

Those tests may be positive fro up to a year after going gluten free.

[Skylark]

Nora, immunoassays are rarely zero. It's really, really common to have a faint signal from cross-reactivity in any assay that deals with polyclonal antibodies. That's why posting the reference range is so important. A reading of 3 on an assay with a reference range from 0-19 is definitely a negative result.

(I might add that I know this because I have actually run ELISAs in a laboratory.)

[nora-n]

okay, good to know.

Here the range is something like 3 and I had 1,4 or so I think.