Dr. Didn't Do The Complete Panel

[AliceW]

OK, so my blood test results for IGA and AGG were negative, but those were the only tests my dr did for the celiac screen!

Ugh. I was hoping to get an answer one way or the other, but this doesn't make me feel like I can know for sure. Now I'm wondering whether I should

1) Make an appointment with Dr. Green at the Columbia U celiac center to have a proper screening (I live in New York, so that would be easy), or

2) Just order tests through enterolab

I really want to know for sure whether or not gluten is my problem. I've had daily reflux and gastritis requiring high doses of PPIs every single day since having a severe case of mono (15 years ago!) and have been having other digestive problems since then too (diarrhea for a few years, now constipation and terrible gas and bloating; I was given a diagnosis of irritable bowel syndrome). I also get mouth ulcers when stressed and have persistent numbness in the fingers on my left hand that no testing has been able to find a cause for. According to Dr. Green's book, I should definitely be evaluated for celiac disease.

What do you guys think I should do?

Alice

[Ursa Major]

Alice, if it's possible for you to see Dr. Green, that might be a good idea. On the other hand, with your two tests being negative, you may be gluten intolerant rather than have celiac disease, which would show on the Enterolab tests. Of course, the fastest (but also expensive route) is Enterolab, as you don't have to wait for an appointment.

Right, IBS. My naturopath wholeheartedly agrees with me (and the majority of people here) that IBS isn't a real diagnosis. That there is a REASON for those IBS symptoms that needs to be found. I am glad you won't settle for that diagnosis and taking all those meds any more.

Whatever your decision is (Dr. Green or Enterolab), I hope you figure it out!

[happygirl]

Oh, Alice!!

How frustrating for you! I'm sorry your dr. didn't do the full panel. I know you were counting on some answers.

Well, honestly, I would definitely try to get in with Dr. Green (or his associates...I've heard his whole office is Celiac focused). I think most of us, if given the chance, would try to get in with him or a "real" specialist!

I'm not sure of your financial situation, but, knowing what I know, here's what I would do, if possible.

1. Schedule with Dr. Green/associates to get in ASAP.

2. Order the full panel (including gene tests, because then you'll at least KNOW if you have them or not!!!) from Enterolab (do these simultaneously, but do the app't first IF you want to be seen.)

Do a search on here...someone posted the codes that are used for enterolab's testing for Insurance purposes. Find the codes, and call your insurance company and ask if they cover them.

The reason I say do both, is because you HAVE the opportunity to do it at the same time. I would hate for you to get in w/Dr. Green, and then, say, it all comes back negative. By then you are sick and frustrated, and then you order the tests....and it'll still be a few weeks for the results from Enterolab.

Worst comes to worst, you give up on trying to get a "standard diagnosis" (which, I really don't think you should quite yet, considering you can try Dr. Green), you can always CANCEL the appointment. Better that then keep delaying the appointment.

Hope this helps. I'm so sorry, girl!