Results Question

[caligirl2001]

I just obtained copies of my medical file, and in it was my results for my celiac test.

I was given one blood test, described as

TTG, Ab, IgA

Reference range < 20

Interpretive Data: Tissue Transglutaminase Antibody, IgA

Results: Normal

That was the only test I was given. Was my testing incomplete, or should that have been enough to go on? I know there are others available. Since all it said was results normal, for all I know, it could have been a 19 since it just has to fall in their reference range to receive that designation. With my positive results to the elimination diet , coupled with how sick I get when I accidentally consume gluten, there is no way I will go back on gluten just to take another test. My doctor gave his blessing to the elimination diet, and the results, but I do worry that other members of my family who have some questionable symptoms may go without a diagnosis if mine are dismissed as an individual intolerance because of the negative blood work on one test. Am I just being a worry wort? I had an uncle diagnosed in his mid 50's with colon cancer and he died in his early 60's, my mom has had issues with diverticulosis for years, lots of other strange cancers inmy family, IBS, auto immune issues, severe food intolerance issues all over the place as well. And our heritage is ripe for it.

[ravenwoodglass]

It doesn't look like a complete panel was done. Keep in mind your test results are your business only. If the diet is working stick with it and consider yourself diagnosed. What convinced my family to test was my astounding recovery on the diet. I encouraged them to get tested and thankfully they did about 6 months after I was diagnosed.

[cassP]

caligirl- i understand you COMPLETELY... im finally convinced to comply with the diet 100%.. but i want that official diagnosis- so that my family will take it seriously!!

i got celiac genes from both parents- my maternal uncles passed away prematurely from heart disease, and my mom's sister is being told she has Crohns. PLUS my dad (who is young, lean & in shape)- has already had Lymphoma AND an Angioplasty. i try to tell them they need testing NOW- but a diagnosis from my GI would help. trying to get properly checked for Celiac with our corporate medical system is QUITE THE BATTLE :/

such needless suffering and possible years unneccessarily lost with loved ones...

**maybe u can talk your family into getting blood panels NOW whilst they're still probably eating enough gluten so they can hopefully have a more clear direction (COMPLETE panels-> Ttg Iga & Igg, Anti-Gliadin Iga & Igg, Endomysial antibodies, Iga Serum.... not just Ttg) --> MAYBE their tests will be definitive enough that they dont need your diagnosis to get better ???

good luck with your dillemma..

[Skylark]

My family was the same as Ravenwoodglass. Mom saw how much healthier I was and started noticing that her stomach hurt after eating a lot of wheat. She had tests and is DQ2 but not celiac, but she sure feels better gluten-free.

[nora-n]

One must eat a lot of gluten daily in order for the ttg test to be positive.

I did not know that when I was tested.

With a lot, I mean at least 0,3 grams pure gluten per kg body weight a day, better 0,5 grams.

And that for a long time, like at least 6 weeks, better at leawt 3 months before testing.

Also, theydid not test your total IgA which MUST be done at the same time, or one must know you can make IgA at all from before.

[cassP]

PS Caligirl:

i just looked at my 2 Celiac Panels again- and my doc's lab had different Ttg ranges than your results- these were my reference ranges:

0-3 Negative

4-10 Weak Positive

>10 POSITIVE

you need to request your own copies- and then figure out if you wanna do a "wheat challenge" for a more complete test.