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-   -   Interpreting Celiac Test? (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/168349-interpreting-celiac-test.html)

sevenofnine 04-18-2012 03:12 AM

Interpreting Celiac Test?
 
I just had some celiac blood tests done and had only one that came out positive. I find conflicting information on the Internet about it, and want to know what to do. I can't ask the doctor, because I got my tests without her through a patient-directed testing service (the test is through Labcorp).

I had a definite positive on the TtG IgG test.

Some people tell me I should get a biopsy, others say it doesn't mean anything.

Can someone give me a definitive answer please? :confused:

I sure appreciate it!

glenntaj 04-18-2012 06:30 AM

I'm assuming--
 
--the test you are referring to is the anti-transglutaminase IgG test (correct me if I'm wrong).

Usually, the celiac panel also includes an anti-transglutaminase IgA test, which according to most of the sources I've seen (you can look these up in The Gluten File at the top of this board or just Google it) is the test most closely associated with the villous atrophy of frank celiac. Did you get that test as well?

Getting a biopsy would be a very personal choice. About twenty percent of people who show definite celiac villous atrophy actually are are NEGATIVE on the IgA anti-transglutaminase test but have other symptoms. What started you on this investigative path originally?

Remember, you don't need anyone's permission to try a gluten-free trial and see how that influences your symptoms.

Dejibo 04-18-2012 07:15 AM

My daughter is celiac and it took several rounds of tests before we figured it out. The blood test showed markers, but since she was GF in the hospital for so long before the biopsy there was no gluten in her system for the gut to react to so her biopsy was negative. She has horrible symptoms, and we kept digging. She went gluten free and felt so much better. Took her to a naturopath who suggested we repeat the biopsy but only after allowing her to be re exposed to gluten for a couple of weeks to allow her gut time to respond. Sure enough, the next one rang up a high positive.

The thing about it is, that even in the face of negative tests, or biopsies celiac is a disease that you can treat without the tests. Go GF for a solid six weeks. Are you feeling better? If so, continue, if not start adding in one by one things that you wanted to eat. See if something triggers an episode. if so, avoid that food.

My daughter went on the caveman diet and stripped out everything from her plate and slowly added in foods GF of course till we made sure that everything she was eating was GF. We found gluten in so many foods! its everywhere! even soy sauce or sauces they use to soak meats in. Seasoning? pills! I was shocked to see how many used wheat gluten to hold pills together. its time to be an investigator and write down every morsel that hits your lips.

mrsD 04-18-2012 08:21 AM

Wheat gluten is also in topical things... shampoos, body washes, and cosmetics.

sevenofnine 04-18-2012 12:57 PM

Quote:

Originally Posted by glenntaj (Post 871126)
--the test you are referring to is the anti-transglutaminase IgG test (correct me if I'm wrong).

Usually, the celiac panel also includes an anti-transglutaminase IgA test, which according to most of the sources I've seen (you can look these up in The Gluten File at the top of this board or just Google it) is the test most closely associated with the villous atrophy of frank celiac. Did you get that test as well?

Getting a biopsy would be a very personal choice. About twenty percent of people who show definite celiac villous atrophy actually are are NEGATIVE on the IgA anti-transglutaminase test but have other symptoms. What started you on this investigative path originally?

Remember, you don't need anyone's permission to try a gluten-free trial and see how that influences your symptoms.

You are correct, my positive test was anti-tissue transglutaminase IgG. I had the anti-ttg IgA version as well, and had the total serum IgA, deamidated gliadin peptides (IgG and IgA) and anti-endomysial antibody test.

Several things started me down this path, among them the fact that my daughter narrowed some terrible digestive discomforts down to eating wheat. She is completely sero-negative.

My son always had a rash that looked suspiciously like dermatities herpetiformis, but he went gluten-free before testing so we'll never know. The rash disappeared but I'm sure some would say it could have been allergies.

Also, I was researching some things a couple of years ago when my mom got ill and celiac kept coming up in my reading. She has very low serum protein, very low red blood cells, very low Vit. D, chronic canker sores, ascites, idiopathic hypo-parathyroidism, and monoclonal gammopathy.

I have Hashimoto's thyroiditis, and I do have one gene haplotype that is associated (though weakly) with celiac, the HLA-DQ 2.2. I do have discomforts when eating gluten, just abdominal discomfort, edema, and fatigue/brain fog.

I figure I should be gluten free, but was thinking at this point a diagnosis might help me to help my mom. I have been unable to get her doctors to consider the possibility of celiac. One doc did a couple of tests, but left off the serum IgA, so her tests were meaningless. More recently, a hematologist humored me by running more, and even did a total serum IgG. Mom is deficient in BOTH IgA and TtG, so her celiac panel was not likely meaningful.

Long story short, I'm on a quest to help my family, and I'm the guinea pig!

Quote:

Originally Posted by Dejibo (Post 871149)
My daughter is celiac and it took several rounds of tests before we figured it out.
The thing about it is, that even in the face of negative tests, or biopsies celiac is a disease that you can treat without the tests. Go GF for a solid six weeks. Are you feeling better? If so, continue, if not start adding in one by one things that you wanted to eat. See if something triggers an episode. if so, avoid that food.

My daughter went on the caveman diet and stripped out everything from her plate and slowly added in foods GF of course till we made sure that everything she was eating was GF.


So glad you got help for your daughter! The caveman diet seems increasingly popular. My family is slowly moving towards gluten free living, though it has been difficult to convince my husband that there is a real, quantifiable problem. He can't see it or touch it, so he thinks it's all in our heads.


Thanks for your input, everyone, I appreciate it very much!


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