Extreme Symptoms But Low Bloodwork Reaction?

[raisin]

I seem to producing minimal anti-gluten blood things, but having extreme symptoms.

After 6 months (now at 10 months) of a gluten-free diet that was not even close to free from CC, with recurrent accidental glutenings, my blood work came back perfect. IGA and all. Pre-gluten-free I was never (officially) deficient of vitimins, but I had developed joint and blood sugar problems.

For how severe my symptoms are, I can't understand why my insides aren't showing more of a beating. I know people can have no symptoms and score high on blood tests.. but how common is the reverse, and does it mean anything?

[dilettantesteph]

I read a comment here not that long ago, within a month maybe, that quoted a study that showed that there is no correlation between severity of symptoms and blood test levels. Hope you get better soon. It is hard to get rid of all CC.

[lizard00]

My doc told me that while we are all intolerant, we have different levels of sensitivity. Which basically I took to mean that since some people are asymptomatic, but still doing damage, those of us that are much more sensitive aren't necessarily doing any more damage than the asymptomatic person. We just have a stronger reaction, or react to much less, than someone else.

In a way it's good... the sensitivity keeps us really strict, and when we do get the occasional glutening, it's good to know the damage isn't as severe as it may feel. Does that make any sense?? LOL Just my rambling thoughts... I don't feel like I'm hitting on much today.

[Tallforagirl]

I read a comment here not that long ago, within a month maybe, that quoted a study that showed that there is no correlation between severity of symptoms and blood test levels. Hope you get better soon. It is hard to get rid of all CC.

Not sure if this is the one you're referring to. The study looked at the severity of damage to villi in symptomatic and asymptomatic celiacs and found no direct correlation. It was a small study sample, but interesting none the less.

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I've read the the tTG and EMA tests relate to level of gut damage - so high positive result = more gut damage.

It's perfectly possible to be very symptomatic with little actual gut damage.

I'm glad I am not a very sensitive celiac. It doesn't sound like much fun.