Should She Be Tested?

[Reader]

My 15 yr old was gluten-free for 4 years from ages 8-12. (weak positive blood test, negative biopsy) It alleviated her symptoms at the time. She suffered from severe nausea, constant vomiting, lethargy and failure to thrive. For two years, from age 6-8 she did NOT grow AT ALL! Not even a centimeter. Then she grew 4 inches in the first year after going gluten-free!

She has done well with normal growth for the last 3 years. At age 12 she was checked for antibodies after 8 weeks of eating wheat and no antibodies were detected. She returned to a regular diet.

However, for the last month or two, she has gotten sick everytime she eats something. Should I have her bloodwork done again?

[Guhlia]

It is my understanding that once positive, always positive, even if it was just a weak positive. She was likely going through the "honeymoon" period when she did not react to gluten. This is common in children. If she had a weak positive blood test when she was a child, she needs to remain on the gluten free diet for life. I wish it could just go away like that, but sadly it doesn't and even a weak positive is still a positive. If she remains on gluten she increases her chances of developing further issues down the road including neuropathy, emotional problems, and cancer. I'm not trying to scare you, but it is really important for her to maintain a strict gluten free diet for life.

[happygirl]

What blood tests were run? There are five main tests that need to be run, and often doctors do not run the full panel, so that's why I'm asking.

Has she been gene tested to see if she has one or both of the Celiac genes (which are present in about 98% of Celiacs)?

I think that the positive dietary response is enough to say that she is gluten intolerant, at the very least!

[chrissy]

i'd test her again.

[shayesmom]

My 15 yr old was gluten-free for 4 years from ages 8-12. (weak positive blood test, negative biopsy) It alleviated her symptoms at the time. She suffered from severe nausea, constant vomiting, lethargy and failure to thrive. For two years, from age 6-8 she did NOT grow AT ALL! Not even a centimeter. Then she grew 4 inches in the first year after going gluten-free!

She has done well with normal growth for the last 3 years. At age 12 she was checked for antibodies after 8 weeks of eating wheat and no antibodies were detected. She returned to a regular diet.

However, for the last month or two, she has gotten sick everytime she eats something. Should I have her bloodwork done again?

With a previous positive blood test, positive dietary response and the current problems she is having being off diet....I'd be of the opinion that the test was accurate the first time around. She should be gluten-free.

It's really confusing to decipher the "weak" positives, "negative" biopsies and all the jargon being thrown around. But how I've understood things is that a "weak" positive is still a positive.....sorta how a faint blue line on a pregnancy test is still a positive indicator that you're pregnant. With time, the positive only becomes more positive. And as for a "negative" biopsy. I was told that a biopsy could never really be "negative". It can only rule Celiac IN, it can never rule it OUT. Damage to the intestine can be very patchy and multiple biopsies should be taken in order to determine Celiac.

The decision to re-test is yours and your dd's to make. But I would be very wary if your doctor is one who claims that Celiac can be "outgrown". This is a life-long disease. It is NEVER outgrown. And going gluten-free usually heals all the damage and reduces (and eliminates) antibodies being produced. For each time your dd goes on the diet and remains on it for long periods of time, she can then be tested and have someone proclaim her "cured" or "no longer Celiac". If she's Celiac, she'll just keep accumulating damage the minute she starts straying off of diet. And she will eventually test positive again.

This diet is a serious commitment. If you have doubts, get re-tested....but go to a doctor who really knows about this disease. You'll find a list of them on this site.

Good luck to you both! Hope you find some definitive answers.

[Reader]

Thanks everyone! You confirmed what I was thinking. I will call the doctor today.

[rez]

definitely re-test her.

[Reader]

The soonest the doctor can see her is May 7