Frustrated With Test Results...

[tunibell]

I was diagnosed with celiac disease via endoscopy/biopsy in 5/2009. Since then, I have maintained a strict gluten-free diet. Currently, there are only three products containing gluten that are even cooked in my kitchen (my husband has toast every morning in his own oven toaster, located on a dedicated counter top, and my daughter has frozen pizzas toasted in the same oven toaster; they also have mac and cheese prepared in a dedicated pot and strained with a dedicated strainer).

When I was first diagnosed, my TTG AB IGG was 16 (with anything over 10 as positive), and my TTG AB IGA was 26 (anything over 8 is positive, under 5 in negative). In October, after five months on the diet, my TTG AB IGG was 3 (negative), and my TTG AB IGA was 7 (neither positive nor negative).

My primary GI, who ran the above tests, has been bothered by the fact that both tests are not negative yet and feels like some gluten must be sneaking in. I recently met with a specialist at Stanford University, who said not to worry, and that these levels can take up to a year to come down.

HOWEVER...I just received my test results from Stanford's lab, and I'm completely confused and upset. My gliadin IGA was again negative, but my IGA Anti TTG level was a 40 (different scale - <20 neg, 20-30 weak pos, >30 pos). Because this was the first draw using Stanford's assay, I have no idea what my diagnosis level was. The doctor wrote in the notes that "this suggests you are still being exposed to food gluten. It's about time for that antibody test to return to normal." I am so stumped - not only am I confused about why it's a concern after only 6 months (versus a year), but I have no clue what I might be doing wrong. His suggestions for improvement, while well-meaning, were laughably inapplicable; he advised me to be "careful with flour in the kitchen" (I tossed all wheat flour on the day of diagnosis) and to call the chef at any restaurant midday before an evening out (I haven't had so much as a cup of coffee outside of the house in months). I tried to call the doctor for clarification, but was told I'd need to make an appointment if I wanted to speak with him.

Anybody have any thoughts/suggestions/reassurances? I feel like I'm doing everything I need to be doing, and I'm really concerned that my blood tests aren't reflecting my efforts.

[Jestgar]

lotion?

shampoo?

pet food?

work exposure?

[tunibell]

lotion?

shampoo?

pet food?

work exposure?

No to all - my lotion and shampoo are gluten-free, as is the cat food. I'm a SAHM, so my work environment is the whole geographical area, so to speak, but I do wash my hands before meals. I've also replaced all my cooking products (salt, cornstarch, spices, etc) and always chose certified gluten-free products when at all possible. My vitamins are all from Country Life, for example, which is a certified gluten-free line.

[ravenwoodglass]

Do you take any prescriptions or OTC meds? Generic prescriptions need to be checked at each refill. Also since it appears your hubby is not gluten-free does he brush his teeth before you guys kiss? That can be a source of CC if he doesn't. Do you use any distilled gluten grain items? Some, but not all of us are sensitive to them. Most important how do you feel? Have you felt like you have been glutened at times?

[loci80015]

I was just diagnosed with gluten sensitivity and with my results came a bunch of descriptives about the disease. From what I read, gluten antibodies can still be found in your body for up to 6-12 months AFTER going gluten free.

[ravenwoodglass]

I was just diagnosed with gluten sensitivity and with my results came a bunch of descriptives about the disease. From what I read, gluten antibodies can still be found in your body for up to 6-12 months AFTER going gluten free.

This is true but the numbers should be dropping if they are going up as it appears the OP's are gluten is most likely sneaking in.

[tunibell]

This is true but the numbers should be dropping if they are going up as it appears the OP's are gluten is most likely sneaking in.

They are dropping...just not as quickly as I (or my doctors) would like.

[ravenwoodglass]

They are dropping...just not as quickly as I (or my doctors) would like.

How do you feel? With the numbers dropping ( I misread your first post and thought they were going up) if you are feeling much better I wouldn't worry about it. If your still having symptoms, other than perhaps an occasional glutening that we all go though in the beginning, then perhaps go over everything again to be sure. It looks like you have gone from definate positive readings to negative in one test and borderline with the other so you seem to be doing well gluten wise. Some of us never get into a 'zero' reading.