Help With Test Results

[hsmomof6]

Hello everyone,

I posted in the pre-diagnosis forum, but didn't get any response, so I'm hoping someone on this board has some advice for me. These are my test results:

TtG antibody IgA <3 reference range <5 negative

Gliadin antibody IgG <3 reference range <11 negative

Gliadin antibody IgA 61 reference range >17 positive

Endomysial AB IgA screen negative

Lactoferrin, stool, negative

The NP at my GI office says that I am negative for Celiac. She said the elevated gliadin IgA can indicate an problem with my immune system. I have searched the web repeatedly and cannot find any info on this at all. Everything I read says this may indicate Celiac or non-Celiac gluten sensitivity. Does anyone have any insight on this or any advice on other tests I should have. I had an upper endoscopy back in August (when all this started), but they did not do a biopsy because they saw no inflammation. They were not thinking Celiac back then, but GERD, which they ruled out due (I do occasionally have reflux).

Thanks!

[ravenwoodglass]

The NP is not well educated on celiac. This: "Gliadin antibody IgA 61 reference range >17 positive" is a strong positive result for celiac. If you are not having the endo done do get on the diet strictly. If you are having an endo keep eating gluten and then the day the test is done go strictly gluten free. With positive blood work you need the diet regardless of the results of the endo.

[hsmomof6]

I haven't been eating gluten for about a week now. Most of my GI issues are getting better. The D has stopped, much less gas, and bloating. I still am exhausted, have insomnia (can get to sleep, but wake frequently and very early and can't get back to sleep), and have trouble eating very much at all. I am having some throat/swallowing issues that are unrelated and they are contributing to the difficulty eating, although for the most part I just get full very quickly and don't have much appetite to begin with. I know I need to do some other things, like get rid of my toothbrush and maybe kitchen stuff for just my food. I feel so overwhelmed with all this right now. It seems so hard and I'm just so tired. I need to feel better, I've got kids who need a mom who can actually be a mom.

Any advice on finding a doctor? I've got an appointment with Mayo Clinic Jacksonville GI for swallowing evaluation in July (I just made the appointment and that was the first one they had). I also have an appointment in ENT there in a couple of weeks to evaluate for a voice problem. I am hoping that once ENT sees me, they can ask for a GI consult and I'll get in sooner. I have been very unhappy with this GI office. I always see the NP and she is very close-minded. If you disagree with her or bring up any research you have read that doesn't line up with what she tells you, she just gets offended. They're supposed to be one of the best GI practices in Florida, but so far, I've not had a great experience there.

[ravenwoodglass]

It sounds like you are getting good results from being gluten free. However if you are going to do any further celiac testing you need to get back on gluten right away. Do keep in mind that endoscopies can have fairly high rates of false negatives so when you are done with celiac testing do go back to the diet. It takes some time to heal so we do need to be patient with our bodies and strict with the diet.

As to the swallowing problems, I had those prediagnosis. I had times when I would choke and it was very scarey. I also had other neurological issues though with movement, mood and thought processes so I can't say whether the gluten is what is causing the issue for you. For me it took a couple of months before that issue went away and about 6 months before I could walk unaided.