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CGally81

What Other Tests Are There?

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Okay, I know I have celiac, because I know how I felt after eating gluten for months before I knew what celiac was. And I knew how much better I felt when not eating it. I self-diagnosed in August, cut back on gluten, and felt much much better.

I took two blood tests. The first one was given by a doctor who didn't know that much about celiac disease and admitted that he didn't know, and planned to have me visit a gastroenterologist to get more accurate results. But before then, he sent me to get a blood test, and everything (he tested for everything he knew about, but not gluten antibodies or the DNA test!) came back normal, except my fasting blood sugar, which was a bit above normal. No abnormal peptides though, so I didn't appear to have diabetes or pre-diabetes. Bear in mind, I was (and still am) in the "hungry all the time" recovery phase.

My gastroenterologist sent me for a blood test, to test for antibodies and to check my vitamin levels, and the DNA test. All of those, except the DNA test, came back normal. I asked if the fact that I'd been going gluten-free caused it, and he said that the antibodies wouldn't mobilize in the bloodstream if I wasn't still eating gluten.

Everything is normal so far! I didn't get my DNA test back yet, but still, I know I have celiac based on my experiences, which mirror those of others here, plus the way I feel better off gluten, but horrible on it. And the fact that gluten made me lose 30 pounds (which I have put back on - and then some).

What other tests are there? If the DNA test comes back negative, or even positive, what else can I do to conclusively prove I have celiac, that doesn't involve eating gluten? I'm probably in the second "half" or so of the "hungry all the time" recovery phase, and I refuse to restart by eating gluten just to prove what I feel to be true.

Any ideas?

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Why do you need a test?

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Why do you need a test?

An official diagnosis could help for when treatments or cures are developed, to convince my insurance to pay for them. (Currently, one cure, a hookworm infection that causes your immune system to stop attacking gluten as long as the hookworm lives within you, can cost upwards of $8000)

Plus, it would be nice to rule out other conditions that might be concurrent (right word?) with Celiac, or that might be mistakened for it (even though it's Celiac that shows the patterns I'd experienced).

I'd also just like some definitive answers.

And I've heard of insurance companies dropping people for "pre-existing conditions", but I have good insurance, as I work for the state government. We don't get great pay, but we get good benefits. I'm not worried about losing my insurance.

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So your plan is to continue looking for tests until you find one that shows you test positive for Celiac?

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So your plan is to continue looking for tests until you find one that shows you test positive for Celiac?

I guess so. I certainly have it. Otherwise, gluten wouldn't cause me to feel zombified and spaced out and totally without energy every time I ate it. I've been glutened by trace amounts I couldn't see (think rotisserie chicken).

My boss believes that I have it, and a newly hired supervisor has it too, but she wants me to get officially diagnosed, because she has a hard time believing some of the things I say, since "you're reading what other people said on the internet".

So I want a test proving I have it. And tests to find anything else I could have (like what's causing the headaches I sometimes get, and sometimes get after I've eaten. A gluten withdrawal symptom?).

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IMy boss believes that I have it, and a newly hired supervisor has it too, but she wants me to get officially diagnosed, because she has a hard time believing some of the things I say, since "you're reading what other people said on the internet".

Have this new supervisors doctor?

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Have this new supervisors doctor?

Good point. Would I have to change anything to get my insurance to see him as my new doctor? Or could I just go in?

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Call your insurance to see if the doctor is in their network.

Sometime insurance companies require a referral from your doctor to a another doctor.

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Not sure I got this right -- are you continuing to stay gluten-free while you've run these tests?

The blood tests for celiac antibody won't show anything unless you've been eating gluten and you'd need to eat gluten for 4-6 weeks minimum before having an endoscopic biopsy.

If your vitamins and minerals were normal - count your blessings that your damage probably wasn't as severe as some and you are still able to get enough vitamins and minerals from your food.

I think you said you are waiting for genetic test results -- If you have either DQ2 or DQ8 and you have positive results to gluten-free diet -- that should be enough for a diagnosis.

Although I also think if you are only seeking a diagnosis for a supervisor - I'd ask them -- do you want me to go back on gluten in order to obtain a diagnosis for you? Keep in mind that the gluten trial could prevent me from working for days or even weeks!

Good Luck!

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Your medical conditions are none of your supervisor's business.

How your doctor diagnoses you with Celiac is also none of your supervisor's business.

Your doctor can diagnose you with Celiac based on your SYMPTOMS and your genetic screening without having a "positive test." This is up to your doctor's discretion. But if he diagnoses you, then you have a diagnosis, regardless of your blood work or biopsy results.

Enterolab will test for antibodies in your stool, but that isn't a definitive Celiac diagnosis; it's an umbrella test that shows an immune response to gluten, of which Celiac is one type. Your doctor might consider ordering that, and your insurance might pay for it, but the results will still be open to interpretation.

You're under no obligation to give your employer a particular diagnosis or to show a particular lab result that supports your diagnosis if you do choose to share your diagnosis with your employer. A doctor's note that says, "Gally has a medical condition which prevents him/her from eating cake. He/she should be exempt from the requirement to eat cake at work," should be sufficient. Or, "Gally's absence from work last week was due to complications from an ongoing medical condition. He/she has been cleared to return to work and is not contagious."

-Elizabeth

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