Questions About Tests And Their Accuracy, Etc.

[meg2]

Well, I have been visiting this site recently because my doctor recently had me get a celiac disease blood test, which came back negative. The long and short of it - I'd had a colonoscopy in my early 30s, because of some pain that couldn't be figured out. No polyps or other issues at that time, the pain was probably skeletal/muscular (which I believe was probably true) and I might have IBS. Due to a slight family history of colon cancer the doctor suggested I have a colonoscopy every 5 years. I just went for that with a new dr. Again, no polyps or problems. I don't actually have a lot of digestive symptoms, just a little bit crampy, etc. from time to time. I told him my other "odd" health things and he suggested I get this test. The other things are : vitiligo which this year is much more noticeable and seems to be "spreading" quickly; low thyroid (diagnosed 5 years ago and supposedly under control with meds) ; and I recently found out I have cataracts in both eyes. I've been having problems with joint pain in my knees and hips for a long time and in the past year it's gotten much worse. My regular dr. didn't make much of this . . . Also, while I was expecting my second child, I had little sores at the corners of my mouth for almost the whole time, which seemed to clear up somewhat with topical and oral vitamin B.

Also, my father has T-cell lymphoma and chronic myelogenous lymphoma. It was his sister who passed away (when I was a baby) at 39 of colon cancer. Apparently she was diagnosed and died several months later.

No mention of celiac disease has ever come up within our family history.

I would love to believe that my results are true, and I don't have to change my diet or worry for my kids. But . . . I do wish my vitiligo would stop and my achiness would stop. Overall I'm very healthy and don't have much to complain about. My "symptoms" are pretty vague and easy to live with. If anyone has time to weigh in on this, I'd appreciate feedback from those in the know.

Thanks in advance.

[ShayFL]

Vitiligo is common in Celiac along with other auto-immune diseases.

Not everyone has digestive issues. And the blood tests are not very accurate.

If I were you, I would ask for a genetic test to see if you even have the genes. It might make it easier for you to try the gluten free diet.

If it were me, I would try it anyway. To see if it helps.

If you can afford it, you can also use Enterolab to test for gluten sensitivity and genetic testing.

Wishing you well.

[Lisa]

Welcome meg,

Did you have these blood test for Celiac Disease?:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

With a family history of lymphoma and colon cancer, I would think that a diet change for good health would be a blessing.

Celiac Disease has over 200 symptoms and it varies from person to person. I am not sure about the vitiligo. But, continue to read here and see if the shoe fits.

[meg2]

Thanks for any and all replies, and for the welcome! I have just called and asked for a copy of my blood test results. The test requested was called Celiac Disease Comprehensive. I have no idea, though, what to look for when I'm reading over them! Any info would be appreciated. I did read an article on this site about the genetic testing (DQ 2 and 8, etc., I'm completely befuddled) but I'm assuming that is not what I was tested for. We'll have to see what to do next . . . .

[meg2]

Thanks for any and all replies, and for the welcome! I have just called and asked for a copy of my blood test results. The test requested was called Celiac Disease Comprehensive. I have no idea, though, what to look for when I'm reading over them! Any info would be appreciated. I did read an article on this site about the genetic testing (DQ 2 and 8, etc., I'm completely befuddled) but I'm assuming that is not what I was tested for. We'll have to see what to do next . . . .

Well, I have gotten a copy of my test results and this is what it says:

IGA, Serum 228 mg/dL

Gliadin AB (IGA) 3 U/mL

Tissue Transglutaminase AB IGA <3 U/mL

Have I gotten the tests I need to consider myself negative? Any help greatly appreciated.