Getting Re-tested After Going gluten-free?

[shirleyujest]

ETA - guess I should've posted this in pre-dx/testing, sorry.

Hi all, I'm well into 3rd week gluten-free and did not get a dx on blood test. Some of the improvements have been remarkable. Main one being enough energy to exercise (walk w/small hand weights) 5x in the past 9 days. AND still enough energy during the day to get a lot done, at least for me. Since lupus dx I've been slowly rebuilding but any kind of exertion usually flattens me for the rest of the day (or two), so with the little energy I've had I generally don't choose to take the walks.

Well not so starting about 1.5 weeks gluten-free. Began walking and last week was one of my most productive in recent years. So that's great right? I'm excited.

I'm still experiencing a lot of bloating though less so, then yesterday ate a big ole bowl of oatmeal, and had a minor ibs type reaction. This morning I was pretty much past it, so I'm tossing the oats and moving on. No g though, and this is great for me, the woman who enjoyed my first doughnut binge while in the womb. (well practically) There's not really an urge left now that I think this stuff may be killing me.

If there's a disappointment it's that I need to travel this road w/o a dx. I'm reading Peter Cook's book and it's super, very understandable and clear. I wish he wrote more about the difference if any with gluten intolerance as opposed to celiac, but it seems like there's just not much research on this. Reading the book though I definitely have an eerie similarity in symptoms, right down to the items I've been malabsorbing (iron, vit. D and calcium). He even mentions anecdotally some people who "have all the symptoms" but test negative, and others who test neg. one year and pos. a couple years later.

It wouldn't really matter except I'm concerned that at some point if I need medical care linked to celiac, and I don't officially have it, that care would be denied. Is this something that should concern me? And if so, if I go gluten-free, say for 3 mos as experiment and then decide I want to re-take the blood test, how much gluten do I need to consume, would one wheat roll the day before be enough or what?

I could do the biopsy but I'm queasy about invasive procedures, and since you're in a twilight I'm afraid of freaking out.

Thank you for your thoughts and for listening to my update.

ETA - finally called my dr's office and was told the specific test results, comments welcome:

IgA tTG = less than 3 (less than 5 IgA normal)

EMA - not done b/c it's reflexive, they don't do it if above is neg.

IgA = 244 (norm. 91-463)

tTG - not done, reflexive based on IgA and that was normal

So... assuming I'm not celiac, but say have antibodies to gliadin, would that cause a lot of the same symptoms?