Advice On Tests And Where To Go From Here, Please

[Kauaiidreamin]

Hi everyone! Long time listener, first time caller and all that... Seriously, though, you all have already helped me so much! I have been lurking and reading a ton since I have started trying to figure out my health issues. I would really appreciate some help--any opinions or advice on whether I should continue with trying for a diagnosis, or anything would be awesome!

I will start with my main questions and then give a little background in case that is helpful.

1. Are the IGA and IGG antibodies good tests for ruling out celiac?

2. If I was gluten free for nearly three weeks, then back on gluten for a week before those two tests, are the test results even valid?

3. How many people here continue with a strict gluten-free diet without a celiac diagnosis?

I am in my thirties, and have had nausea after eating until my stomach is empty for at least 10 years. My "normal" BMs were diarrhea, which sometimes became intense for a day or so at a time (probably a couple of times a month). Body/joint aches, awful fatigue, lots of headaches and migraines, anxiety and depression.

I have Hashimoto's thyroiditis and I have been reading about the connections between that and celiac and/or gluten intolerance. When my thyroid tests kept coming back great while on treatment and the fatigue somewhat improved, but I still felt terrible, I decided to try gluten free to see if it helped.

About 3-5 days into the gluten free trial, it was like night and day...the aches were gone, I had energy, my anxious mind was still in the first time in YEARS. The nausea after eating was gone. The diarrhea was gone.

So I went to my doctor and asked to be screened for celiac, just in case, before I went gluten free forever. My test results were as follows:

IGA: <3 (reference range <11=negative)

IGG: 7 (reference range <11=negative, 11-17=equivocal, >17=positive)

Based on that, my doctor said I was not celiac but doing the gluten-free diet was not harmful so I could do what I wanted. This was mid-Feb of this year, and I have been gluten free ever since.

I have had two episodes of the "flushing" diarrhea and nausea after eating since going gluten-free, both times after eating out (even choosing what I thought was a gluten free meal). Other than that, I feel pretty good. But the diet is hard, and I guess I am questioning my choice if I am not celiac...concerned that maybe I am missing another problem.

Anyway, sorry for writing a book. Any advice?

[WheatChef]

If your body responded positively to removing a possible toxin from it's system and then responds negatively to you reintroducing that same toxin then none of the blood tests that have or ever will be developed can give you a clearer answer. You mention contemplating going back on gluten for your next blood tests. If you go back on gluten and all of a sudden start feeling bad again, but bear with it till you get the tests, and then the tests all come back negative and your doctor tells you that you don't have a problem, would you really continue to eat gluten?

As for your third question, I do. My blood tests came back negative for celiacs yet a very long list of what I had thought were unrelated symptoms were already starting to clear up early on in my gluten-free diet and so my doctor said I should just continue doing the diet anyways although by the point when he said that (one month in) I didn't really care what he thought since I was finally seeing results.

[Kauaiidreamin]

If your body responded positively to removing a possible toxin from it's system and then responds negatively to you reintroducing that same toxin then none of the blood tests that have or ever will be developed can give you a clearer answer. You mention contemplating going back on gluten for your next blood tests. If you go back on gluten and all of a sudden start feeling bad again, but bear with it till you get the tests, and then the tests all come back negative and your doctor tells you that you don't have a problem, would you really continue to eat gluten?

As for your third question, I do. My blood tests came back negative for celiacs yet a very long list of what I had thought were unrelated symptoms were already starting to clear up early on in my gluten-free diet and so my doctor said I should just continue doing the diet anyways although by the point when he said that (one month in) I didn't really care what he thought since I was finally seeing results.

Thank you for your perspective and sharing your experience...you're right, I wouldn't go back on gluten permanently even if more tests came back negative. The only celiac tests I had done were after three weeks gluten free, then one week back on and it was awful. I couldn't wait to get the blood drawn and quit eating gluten. I guess having a diagnosis would help me get through the times I get sick of paying so much attention to what I eat and want to give up, but maybe I just need to trust what my own body is telling me and not worry about what anyone else thinks.