Need Help Interpreting These Results

[across]

I'm good at a number of things, but science isn't one of them, so the more you can explain things in plain English, the more grateful I will be! :-) I need some help interpreting my test results.

 

I've been gluten free for six months, but had a three week period when I ate a small amount gluten just prior to these tests (it was difficult to cook at home during that time because we were having plumbing issues).

 

My doctor told me repeatedly that I did not have to do a gluten challenge before taking the tests. I knew this was incorrect.

 

The results came back as follows. Based on these results, he diagnosed me as gluten intolerant, not celiac:

 

Gliadin AB, deamid. IgG 4.1 (within range)

 

Gliadin AB, deamid. IgA 21.8 (weak positive)

 

TTG IgG 3.0 (negative)

 

TTG IgA 1.9 (negative)

 

Does the weak positive on the IgA mean I should do a gluten challenge and pursue further testing with a different doctor? 

[nvsmom]

Do you know what your lab's reference ranges were? Was it 0-20?

 

I'm surprised that you had a weak positive on the DGP IgA is you have been gluten-free, even though you did have some gluten prior to testing. The DGP IgA tests shows an autoimmune reaction to gliadian which is only positive in celiacs - it is not thought to be a test for those with non-celiac gluten intolerance (NCGI).  This report has more on the tests on pages 10-12: Open Original Shared Link

 

The DGP IgA has a specificity to celiac disease of 93-96%, so that means that when you have a positive result, chances are it is caused by celiac disease. It is also the best test (along with DGP IgG) for catching early celiac disease and monitoring dietary compliance - it is the first test to change with diet change. If you continued to eat gluten, it would probably become even more positive, and eventually (after 8-12 weeks of gluten, the tTG tests would most likely become positive too. You were correct about a gluten challenge being required for accurate testing... it's a shame when doctors mess this stuff up!

 

Pursuing a diagnosis is entirely up to you. You have one positive celiac disease test, and a good response to the gluten-free diet - if that is enough for you then you could go gluten-free for life tomorrow.  If you want more reasons to go gluten-free, then you should be tested and perhaps even have the biopsy (only 2-4 weeks of gluten needed for that).

 

Best wishes in what ever you decide to do.

[across]

Thank you, nvsmom-- I really appreciate your help!

 

The reference range for the deamid. gliadin IgA was <20 neg., 20-30 weak positive, >30 positive.

 

I can't imagine doing a gluten challenge! Just the small amount of gluten I had prior to the test made me miserable. I'm still dealing with the aftereffects of that. Ugh!

 

The thing is, I hate uncertainty. I have no problem going gluten free, but from what I've read, having celiac requires an extra measure of vigilance that I'm not doing right now. I still eat gluten-free at restaurants for example, which I'm not sure I'd risk if I was certain I had celiac. My extended family also thinks I'm a hypochondriac when I talk about my issues with gluten, and I guess I feel like maybe they'll cut me a little slack if I have an official diagnosis. Additionally, my mother and sister have symptoms, and I'd love for them to get tested.

 

I don't know -- I really don't want to go through all the pain and damage to my body that a biopsy would entail. Sigh...

[nvsmom]

If your family gives you grief over it, you can honestly say, "I tested positive for celiac disease." It's true!  You just have a clueless doctor who did not recognize that fact, and tested you without a gluten challenge.  LOL  

 

I know what you mean about wanting more "proof" that you have to go gluten-free, but you may not get any.    It looks like you need to go gluten-free anyways though.  Those with NCGI need to be 100%gluten-free too.  They don't eat gluten-lite, they eat gluten-free.  Celiacs and those with NCGI eat the same way.

 

Hang in there.  Getting a diagnosis, coming to grips with it, and going gluten-free is tough... but you can do it.  

[BlessedMommy]

Celiacs can and do still eat at restaurants, though most choose not to go too often, to limit the risk.

 

I'm eat out on occasion. I don't eat at places like Taco Bell, though. I try to be selective as to where I go.

 

I prefer to go to places that have a better gluten free reputation and an established protocol for handling things. Some of my favorites are California Pizza Kitchen and PF Changs. I also like BD's Mongolian Grill. (they have a separate grill for allergies)

 

I will get a plain baked potato at Wendy's on occasion and request that they change gloves before handling.

[across]

I'm glad to hear you can still eat out, BlessedMommy!

 

My head is still spinning from all of this. I eat out a whole lot. I always order something gluten-free, but I've been glutened before in some of the restaurants even with the gluten free options. Also, I have to spend two weeks in another state for school in a few weeks. I have to live in the dorm and eat in the cafeteria during that time. I know they do gluten free options, but I don't know how strict they are with their prep methods.

 

I also have a problem in that my mother recently moved to town and lives three doors down. She LOVES to cook, and feels that me eating her cooking = me accepting her love. She definitely does not understand how little gluten it would take to make me sick (she was the one trying to get me to eat fried chicken because it had "just a little flour.") Her butter crock, for example, is filled with breadcrumbs, so even eating plain veggies with butter would be a problem at her house.

 

I don't eat anything that I know has gluten in it, but I haven't been extra vigilant about cross contamination because I figured if I accidentally got glutened, I would get over it after awhile. It it's celiac, everything is raised to another level.

 

I guess I just need a little time for my mind to come to terms with all of this...