I have just found out today that my 4-year-old daughter has test positive for Celiac (the antibody blood test). I was wondering how accurate these tests are. We are trying to get in with the only pediatric gastro. dr in are area and they say it could be months before we can get in for a biopsy. Of course they are asking me to keeping her on a gluten diet until after the biopsy. Is there a percentage of false positives with this test? She doesnt have alot of signs of celiac. The reason she got the test was because she just turned 4 and weighed in at 28lbs. It makes me mad that they waited till now to test her. I have expressed worry about her weight since she turned one.

tests aren't accurate in young children, which is probably (hopefully) one of the reasons they waited. additionally, false positives are pretty much unheard of, outside of the lab returning you someone else's results. her being underweight IS a symptom, but many people - particularly children - show few of the major symptoms like diahrea or significant intestinal distress. you can talk to the doctor about forgoing the biopsy and diagnosing based on blood tests alone, or just wait for the biopsy, but he's right in keeping her on gluten for that in order for it to be a reliable test.

I would call and ask them why they need a biopsy and will they diagnose w/out that. Then ask what an 'official' diagnosis will do for you. Ask if the + results and her gaining weight on a gluten free diet will count instead? When my son was having reflux issues it took us 2.5mos to get into the GI and then if it weren't for our nurse, it would've taken us another 3 mos to get in somewhere else for a second opinion. We tested Evan (he's 26# at 3 and 34.5") and his was negative which is more common this age, than a +, especially since he's only eaten gluten for about 1/2 his life. I got tested today and don't plan on getting the biopsy if it's +. I hope the diet helps and I would start it ASAP.

I've gotten mixed opinions on accuracy of this test. My 3 1/2yo is only 29.5lbs and is a boy! he's like in the 8th % for his weight. No concerns from our ped though.

Weight is so tricky! For us Evan just doesn't fit w/ our family size wise, lol. Sounds terrible doesn't it and I know there's always recessive genes etc, but no one is small in our families. It won't be long before Evan and his sister (2 yrs younger) look like twins, they're only about 4# difference. Evan has obvious bouts where he grew, when he was Neocate only he took off in weight and height and when we introed foods back, he slowed down so it's hard. Right now we're o.k. w/ his 5% weight, it's his height that worries us sometimes (0%).

Angie -

I just found this on the Celiac Disease Center at Columbia University website:

"Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

Positive serologic tests in the presence of a normal biopsy

This situation occasionally arises. The presence of a positive EMA with a normal biopsy indicates either the presence of celiac disease that was not detected in the biopsy, either because of too few pieces being taken or misinterpretation. The biopsy should be reviewed by an expert gastrointestinal pathologist. If it is considered to be truly a normal biopsy the patient may well have latent celiac disease and will probably develop the disease at a later date."


I would think that unless there is a problem with cirrhosis, diabetes, etc., you could take that positive blood test as a positive diagnosis for Celiac Disease. And you can test for these other problems, too, and then if all are negative, it leaves only one possibility.

Like someone else suggested, find out if this g.i. doctor would diagnose without doing the biopsy with a combination of positive blood test and (if you try it) positive response to the diet. You could also get a gene test to see if your child has the gene for it. If your doctor and/or insurance won't do it, you can get one done through enterolab.com. Some of their other tests available are not yet recognized by the general medical community, but their gene test is reliable in the sense that if your child has HLA-DQ2 or HLA-DQ8, then your child has one of the Celiac Disease genes. The other gluten intolerant genes that they recognized are not yet also recognized as so by the medical community (and I'm not agreeing or disagreeing with their position - I need to research more myself before having an opinion). Some g.i. doctors will take the positive blood test with a positive gene test as enough for a diagnosis.

And (please keep in mind, this is only my two cents and I hope I'm not offending anyone) I would get your child onto a gluten free diet as soon as you can. Every day someone with Celiac Disease is exposed to gluten they are being damaged. This can lead to several other complications besides low weight: other autoimmune diseases, low bone density, liver problems, increased risk of cancer, etc. And some of the emotional/behavioral/mental issues that others experience (and your child may be experiencing as well and you just don't know about because this has been your "normal" for so long) can be very scary. Waiting that long just to get a positive biopsy (and as you can see from the quote above, it does happen) just seems to me a little scary.

Juliet-
Thanks so much for the attachment. I finally got an appointment with the GI ped. doctor on March 13th but they do have us on a cancellation list to get in sooner. They seem to understand that there is some urgency. My pediatrician has also expressed an urgency on getting her gluten free soon. I am having a very hard time continuing to feed my daughter gluten...I now feel like I am poisoning her. My husband has a lot of signs of Celiac Disease himself. I am sending him in for a blood test to see if that comes out positive. I will defintely speak to the doctor about skipping the biopsy if that test comes positive and about the gene test. Thank you!

Hi,
just reading some of this........its been months since I was on this website. My now 3 year old had the biopsy and it was not bad at all. I am glad we did that because this gluten free diet can be hard at times and I have confirmation with the biopsy and will just keep moving forward gluten free. Also, my husband tested positive....good luck at your appointment.

Has your DR called the GI to get your dd in? I know I was going to have to wait 3 mos for a 2nd opinion on Evan, but when our nurse called and explained what was going on, we got in the next week.

We are in for March 13th but on a cancellation list. I am going to call again tommorow to see if she has any openings. We are trying different gluten free foods sporadically. We are still not gluten free but I thought it was a way of finding out what she likes so we can be ready. She is SOOO picky. She has not liked anything we have introduced! Ugh.

Definitely stay glutened up a lot. Children heal so quickly that any slack could result in less villi atrophy and then a negative biopsy.

Have you considered driving to a different Pedi GI that can get you in more quickly? We drove to Baltimore to Dr. Fasano. I would not say he is the best though, the number of biopsy samples taken was too little, they only took 4, I understand they should have taken at mininum twice that amount.

That is aweful to have to wait that long. I would be on the phone trying every angle I could, even going out of state.