Originally Posted by glenntaj
--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!
Originally Posted by Dejibo
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!