New To This - Very Confused

[shawnw]

Hi - I am new here and have a few questions. My 19 month old is having the biopsy done next week. I never even heard of celiac so when the doctor told me this, I started looking into it but I'm confused about all the discussions on blood work. I have searched all the messages and still have questions. Here are my main questions:

If she has the biopsy, do I have to have further blood work done? Are the biopsy results definitive? Should I then ask for any other blood work? Is there anything else I should ask for?

A little history - My daughter was a preemie (33 weeks) and was totally fine until 15 months old. She didn't have any symptoms at all while she was an infant - she nursed and I started solids at 7 months. No reflux. She nursed until she was 16 months (although it was just once a day at this point). At her 15 month appt., the doctor said she needed to gain weight because she was only 19 pounds. I was told to give her Pediasure and she wouldn't take it. She began refusing food even though she used to be a great eater. She was on home health services for 8 weeks, began spitting up and swallowing it, bad burning rash in her diaper area, not eating well, etc. I switched Peds, she sent me to a Ped GI and he ran the following tests - blood, stool and an upper GI study. He said they were all fine except that her IgA was low (17). I don't know which one he tested or what it even means. He explained that "basically I can't rely on her blood work" so we are doing the biopsy.

She doesn't seem to have a lot of the symptoms that other kids have but she is so young that I have no idea whether she is in pain anywhere.

Thanks.

Shawn

[Guest cassidy]

Sorry you and your daughter are going through this.

Here is the deal on testing. If you have a blood test and you test positive - even just a little, then you have celiac. If you test negative then you can't rule it out because the blood test is only about 50% accurate.

If the biopsy is positive, then you have celiac. The issue is that the damage is likely in "pockets" and if they don't take enough samples there could be damage around the corner that they didn't catch. Also, if your blood test is negative a biopsy will likely be negative.

It is a bit fuzzy why some people have damage that shows up in a blood test or biopsy and other people don't. Maybe the people who don't show damage aren't that sick yet, maybe they have gluten intolerance and not celiac but the answer is still the same - they need to go on the diet.

I'm not sure what it means if the blood work is low. Hopefully, someone will know the answer to that.

Please just remember that the tests don't always show celiac or a problem with gluten. If you try the diet and she seems to want to eat more/seems to feel better, then it probably makes sense for her to be on the diet regardless of the test results. The diet certainly wouln't hurt her so there would be no reason not to try it even if the biopsy wasn't conclusive. Doctors don't always know a lot about diagnosing celiac so I would ask questions and confirm the info with people here who have been through this.

Good luck and I hope she feels better.

[tarnalberry]

If she has the biopsy, do I have to have further blood work done? Are the biopsy results definitive? Should I then ask for any other blood work? Is there anything else I should ask for?

Testing, for most things, but especially celiac, is never definitive. None of the testing for celiac is definitive. There are false negatives for all of the tests, though false positives are truely next to impossible, assuming a broader view of celiac than many doctor's take.

Most doctors view the biopsy as the end-all-be-all. If there's, damage, it's celiac; if there's not damage, it's not celiac. That's because that is how the condition has been defined, historically. The problem is that plenty of people still have serological and physical reactions to gluten even if a biopsy hasn't noted damage. Why? Perhaps the damage in the intestine is patchy, and the biopsy only took a few samples and didn't happen to sample the damaged areas. (I think of this one as a probability and timing issue.) Perhaps the damage in the intestines isn't severe, and the lab tech or doctor reading the slides determines that there isn't enough damage to count as celiac, in comparison to whatever standard they are holding the slide to ideally look like. (I think of this one as an expectations issue.) Trouble is, reading blood work can have the same problem - you are dependent on there being enough damage to the intestines that the antibodies can get through the intestines into the bloodstream and register higher than the expectations that the lab has set for a positive.

So, it's a qualitative evaluation of all the results tests available and realistic to run. And dietary response is a valid test as well, that needs to be included in that evaluation. Under two years, the blood tests are pretty unreliable, so they do often go directly to a biopsy, but there may not yet be enough damage to show up as celiac. So I would hope that they would also ask you do to a dietary trial, would look at running complimentary tests (vitamin deficiencies), and re-run tests in a year, even if you keep her gluten-free.

The IgA being low (17) doesn't tell you anything unless you know what IgA it is. I'd guess it's total IgA - did he say that she's IgA deficient? In that case, that means that she generally produces less IgA - regardless of what subtype - than the general population. In terms of testing for celiac, that means that the anti-gliandin and anti-tTg IgA tests will show up negative (on the standard reference ranges), even if they were to be positive (for her) because she produces so little IgA no matter what.

[shawnw]

Thank you very much for taking the time to respond. I'm glad I asked so I can be better prepared on the day of the biopsy.