Tests To Monitor My Health

[BlessedMommy]

I don't have an actual celiac disease diagnosis, because my symptoms resolved when gluten-free and then when I resumed eating gluten, I had a TIA caused by chronic headaches on the gluten trial. That happened only 10 days in. Doing a 3 month gluten challenge would be a disaster!

 

So while I would've loved a real diagnosis, I don't have the inclination to risk death, hospitalization, or permanent disability to get one.

 

However, that means that I don't have any doctor's guidance and I sometimes wonder if I'm doing things right or if I'm truly healing. My regular family doctor doesn't know much about things, he just told me to stay away from gluten, but that "a little bit probably wouldn't bother me."   

 

I also don't know whether I have celiac or NCGI either. 

 

After 4 years gluten-free, would celiac tests do me any good? In other words, if I took a celiac blood panel would it tell me if I'm being successful enough at following the gluten-free diet? Or are the tests not sensitive enough to detect minute levels of gluten in the blood?

 

Also, what about tests to check my nutrient levels? Are there any ones in particular that are recommended for celiacs/NCGI?

[1desperateladysaved]

I use a "SpectraCell" nutrient test.  This uses white blood cells to see what nutrients have actually gotten in to the cells. As I understand it, the body keeps the blood levels of nutrients stable while it may sacrifice the levels in the cell if there is a deficiency.  This test came to be covered by insurance about a year ago.  My nutrient levels were at first low even using a serum blood test.  However, my Spectra-Cell revealed rises in nutrient levels which were adequate.  I was between 12-18 months gluten free when we discovered my nutrient levels had come up.

[BlessedMommy]

Where could I get those tests?

[kareng]

You don't need to do fringe tests from Internet labs. Your doctor can order some basic ones to see if you are getting enough vit d, iron, ferritin, 12, etc.

A Celiac gets Celiac blood tests every year to see if they are doing a good job with the gluten-free free diet. However, occasional accidental gluten would not show up on those tests.

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Do I need to have a follow-up test each time I get glutened?

Follow-up tests are intended to test whether there’s significant (and repeated) exposure to gluten. A mistake (or two) may cause symptoms, but they will only activate the disease for a short time, though it must be noted that each celiac responds differently. It’s the repeated exposure for the long-term that keeps the disease active enough to cause damage.

[BlessedMommy]

I don't necessarily want to order "fringe tests" but I don't necessarily want to order through my doctor either. 

 

I suppose that a normal private lab (not an internet lab) would have the basic tests that I need.