A quick question. What does it mean if a celiac serology shows a reaction, but below the cut off for celiac disease?
What were your results? If you were borderline, you should be tested again in a couple of years, as you may go on to develop coeliac disease. I believe most people will have a few antibodies when tested though, it's nothing to worry about.
Unfortunately I can't locate them - that one was a long time ago by a medical practice that no longer exists and I didn't get my files forwarded at the time. Antibodies suggested a reaction, but below the coeliac threshold, according to the doctor at the time - who recommended giving up gluten entirely, but that was (a) hard and (b) seemed unwarranted at the time. A later test showed zero reaction but was probably in a time of less gluten intake so not sure what to make of it.
I'm "due" another test, but think I'll do the genetic testing first/instead - a negative genetic screen means I can probably skip the serology tests in future. Gluten seems to negatively affect my bowel and I'm trying to work out if it is just an annoyance, or something more serious, if you know what I mean - there's coeliac in my extended family. In either case the solution will probably be a GF diet.
Curious that most people have antibodies! Does that mean there is a laboratory artifact in the testing, or that most people are in fact reacting at a lower level to the gluten? Is that lower level reaction bad too? Also curious why the threshold is where it is? Why not higher or lower? (Sorry, I have lots of questions.)
To set a threshold, they generally test a large proportion of well people (i.e. those who don't have coeliac disease), and the range is based on what levels were found in those non coeliac test subjects. Basically, all the people without CD will have ranged somewhere between 0 and 7(?) Most people would come back somewhere 0-5 (at least that's what I read). I think that's about an unreliability in the test itself, not that we have real antibodies. I've heard of people being told they're borderline, so somewhere 6-7 on the scale.
If you were still eating gluten frequently (once a day or several times a week), the fact you reduced gluten won't have affected whether you tested positive or not.
I keep reading different things, but 2-4 servings per day for three months comes up. I'm not sure I'd have got to 4 a day.
If it is an unreliability in the tests, that makes sense.
That's only really for the gluten challenge, which is where people were 100% gluten free, and reintroduce gluten to be tested. That's 2-4 portions for a minimum of 6 weeks. If you've generally always eaten gluten, then you only need to eat equivalent to 1 piece of bread a day to test positive. Of course, some days you'd have more, and some days less, but that's ok.
Is it dose related? Can you provoke a bigger response if you eat more? Or is it more yes:no - one or the other?
I do get a lot of gas when I eat lots of it, so I've been tapering it down for a long while, but I generally eat at least some most days. None today though. Ummm, maybe 2 slices of bread yesterday. Probably none tomorrow.
I think so - the more you eat, the higher your antibodies would be. But antibodies are a complicated thing, so your reaction might not be as high as the next persons on the same amount of gluten!
I guess I'd just like to get a definitive answer.
I have enough symptoms (and now a newly discovered family genetic predisposition) that I feel I need to examine it properly and have it ruled out (hopefully).
I think I'm deciding that I need to do the genetic test. If it comes back negative I can probably ignore coeliac forever, eat gluten free as needed for symptom relief and not be overly worried if I get a crumb. If it comes back as positive I'll reintroduce gluten at as high a level as I can for 6-12 weeks, and do the testing again.
I attended a research talk on coeliac disease recently, so I'll also pass on this info:
40% of the population carries the DQ2/8 genes, but still only 1% develop the disease. They had many patient examples who carry the gene, who turn out to be NCGS instead of coeliac.
Yes, and that's an interesting point also. A family member has two alleles and has been told it is when, not if, he gets coeliac. His son has one allele (mum is clear) and they've been told 4% lifetime risk, or something like that. Still, NCGS is an interesting finding if it is indicated by genes.
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