Daughters Celiac Panel Negative!

[Twister2]

HI all, I posted a few weeks back about our 16 month old daughters 3 month long bout with diarrhea. I have Celiacs, and we thought for sure that she did also. She has light colored stools that appear oily when solid or diarrhea all the time. Our Pediatric GI doc did the Celiac panel and she was totally negative. He now thinks that she may have Cystic Fibrosis. This obviously is not what we expected and is pretty scary news. Has anyone else been through this? They are sending her to a childrens Hospital for CF testing now. Any adivce?? I hate to say it , but I would rather she have Celiacs!

[KaitiUSA]

I have heard that blood tests on kids under 24 months of age might not have accurate readings.

Also, was she tested for the full celiac panel? And was she on gluten before testing?

Good luck

[plantime]

16 months is very young for the bloodwork to come back positive. False negatives are very common at that age! Which tests were run?

[Guest nini]

it's extremely common for blood tests to be inaccurate in young children... my daughter's ped felt that the positive dietary response was good enough to make a dx with negative or inconclusive bloodwork. The ped. gi tried to tell us it was JUST IBS. With a mother's positive dx of Celiac, the likelihood of the child being celiac or at least gluten intolerant is extremely high. How does she do on the gluten-free diet? That would be a key indicator and there are quite a few doctors out there now that will tell you that a positive dietary response is just as accurate (or more so ) of a test.

[mommida]

My daughter had only 1 slighty elavated test result. She tested positive genetically for DQ2 and DQ8. (Do I sound like a broken record or what?)

I agree with Nini. You will have to take into consideration the dietary response, because what Kaiti said about the tests accuracy in a patient your child's age is not very accurate.

Laura

[pwalasik]

I am so sorry you are going through this whole experience and guessing game. I too went through all of these tests with my daughter, (false negative blood tests, Cystic Fibrosis tests and many others like a 72 hour fat absorbtion test to see if the pancrease was functioning normally). TRUST ME!!! False negatives are VERY common in young children. When my daughter was having the CF sweat test, I was told you can really taste salt on the skin and tears of children with CF by kissing or licking. After you get what I suspect and pray will be negative results from the CF test, I would really try removing gluten from her diet to see what happens. Many times the proof is in the response, especially with one parent having a confirmed positive result. Best of Luck!

[Guest Annie74]

My son was tested at 3.5 years and had all negative results on his blood panels, but had a biopsy and it showed the typical celiac-damaged intestine and blunted villi. I am assuming that his bloodwork was run incorrectly because we have had him on a gluten-free diet for 6 mos and his health has completely changed, he is a new, healthy, happy kid who is finally on the growth charts now!

[Twister2]

HI all.....her sweat test was negative and we have done the fecal fat absorbtion test and are waiting for her results. I am going to put her on a gluten-free diet if these also come back normal because I KNOW something is not right with her. It sounds to me like Celiacs, but tell that to her doc!!!!

[Twister2]

I forgot to mention that ALL of the tests for Celiacs were run on her, they have a "Celiac panel" test at Promethius labs in California that tests for everything. She was negative on all accounts.

[Guest nini]

still even with a full panel, blood tests in children that young just aren't accurate, unfortunately there are still too many variables that the medical community is not aware of yet.

If her dr. is not onboard with you, maybe it's time to find another dr.? I was lucky with my daughter's ped. that She was very supportive and helpful. Even though she didn't even know as much about celiac as I did, she was willing to hear me out and to research it and backed me up 100% in putting my daughter on the gluten-free diet.

If she doesn't show improvement on the gluten-free diet (and give it some time to be sure) then obviously keep searching for answers, but I'm willing to bet ya, since you have Celiac, that she is gluten intolerant as well.

[key]

My son that was about 13 months at the time he had his celiac panel was all negative too, but he has been on the diet for six weeks now and he is a different child. Normal poop now, happy baby, growing now and thriving in every way. So I have to agree that the tests in children just aren't accurate. My child wouldn't hardly eat before and now he is eating everything in site. It makes me SO happy!

Good luck,

MOnica