sand19

Thanks, we've since been to the appt. and, yes, we have to get her back on gluten just like you said. It's VERY hard to force a 9 year old to eat what doesn't make her feel good!! She does understand though that it's better to just do it now and get it over with. We've decided to give her the gluten in the evenings when she is home from school, it's easier to go curl up in bed with stomach cramps than to sit through lessons at school!

Just out of curiosity, does anyone know why your system has to be so saturated with it for the tests to come back positive?

Sandra

You need to be feeding her the equivalent of 2-4 slices of bread for 4 weeks for an accurate blood test. It doesn't have to be bread but just something high in gluten. I can understand your reluctance to do this and you need to discuss this further with your peadetrician.

I work for the celiac society in Australia and that is what we tell people who ask.

You can also ask for a gene test for celiac disease. This will not tell you if she is a celiac but it can tell you whether or not she has the gene for it. If she does not have the gene that she cannot be a celiac. If she does have the gene than she possibly could be a celiac. The problem is that 30% of the population have the gene and don't necessarily go on to develop celiac disease.

My daugther has had the blood test for celiac disease. Simple blood test followed by very quick gastroscopy which took all of 10 minutes. No pain, no problems.

It certainly sounds like she could be celiac by what you are saying.

I guess I'll just wait for the appt. now. It's on Mon. The closest pediatric GI's are in Hamilton. She is not tiny or not growing, but she just lives with constant stomach cramps, bloating and diarrhea. She ate gluten last week and it took her 4 days to feel back to normal. I'll ask the pediatrician for a bloodwork req. and then make her eat a regualr gluten diet for a few days. Since celiac is autoimmune, I would assume that the body would begin producing antibodies as soon as gluten is introduced to the system. If it is celiac, then a few days of gluten ought to do the trick shouldn't it? My understanding is that the longer you eat it the more damage it causes to the villi in the intestine and that is what you really want to avoid. This is why I want some sort of answer now so that we can avoid too much damage before she reaches adulthood. My husbands cousin was diagnosed as an adult but had to get really sick first before he was accurately diagnosed. I really just want to spare her the pain of having to go through that!!

Oh Man ! Good to know.

Thanks so much for the info. How long/much gluten needs to be in her system for tests to come back positive? We did a bit of our own experimenting and had her eat regular pasta a few days ago. I feel quite badly because she is still suffering 3 days later!! Can I just keep her gluten free until the day before our Appt.?

Sandra

Hello, I'm new to this forum and it looks like I've come to the right place!! My 9yr old Daughter has had stomach problems since she was a baby. Initially we thought it was a problem with dairy but staying away from that has never really solved her problems. Recently things have been getting worse so I took her to our family doc who asked us to follow a strict dairy free diet and keep a food diary. We did this for 4 weeks but found no sig. improvement. She then told us to try and go wheat/gluten free and has referred us to a ped.

She has been wheat free for a month now and is feeling MUCH better. We See the Ped. at the end of this month. I'm not sure what to expect. What sorts of tests are done on children? Is there anything I should be aware of? I have been told that there is a very invasive/uncomfortable test that is done, is this worth it? Are there blood tests that are done? Does an allergy test show anything if there is no skin reaction?

We are in southern Ontario and waiting to get reffered to a pediatrician takes FOREVER. This is why I want to make sure I get all the bases covered when we finally get in there!!

Thanks for all your help, Sandra