Suspected Celiac Child

[sand19]

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

[Rondar2001]

Hi Sandra,

Welcome aboard. I'm in Calgary so I know the wait can be a long one. First off, be aware that your daughter needs to be eating gluten for any of the celiac tests to come back positive.

Our pediatrician started off with a blood test for the celiac panel, which came back clearly positive, then referred us to a pediatric GI doctor. This wait can be the longest, but with the positive blood work they rank you has a higher priority. We also made sure that we were put on the cancellation list, this cut down our time from referral to diagnosis to about 6 weeks (we were very lucky this way).

We did have the biopsy to confirm the celiac diagnosis. This test was very easy and not scary at all. They had a clinic about a week before, showing us where we would wait and explaining to the different children having surgery what to expect. We showed up at the hospital at 7am, an hour later they took her to the operating room and didn't even put in an IV until she was asleep. 30 minutes later she was in recovery and we were home by noon. We received a phone call a week later confirming what we suspected and made an appointment with the hospital dietician.

Hope that helps and good luck in your journey.

[curiousgeorge]

I am the celiac one in our house, but I asked our family doc for the blood work paper work for my kids and hauled all three to the sick kids lab for the blood work. I had it back in a couple of weeks. DD had the highest levels but not quite enough to be considered ceilac. All three are gluten-free now because my kitchen is gluten-free.

[sand19]

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

[rinne]

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

No, in order for the test to show damage she must continue to damage herself. This is a difficult choice for an adult to make and I am sure an even more difficult one for a parent.

Some doctors will consider a positive change in health as a result of a gluten free diet as clear evidence of Celiac and diagnose it as such. While there may be good reasons for the testing it is not always required.

In my case the wait for an endoscopy was five months and given the pain I was in there was no way I was going to continue to eat gluten.

There are alternative tests available through Enterlab but I have no experience of that testing although many others here have.

And hello and welcome.

[sand19]

Oh Man ! Good to know.

[curiousgeorge]

I would ask yuur family doc for the blood req. If you go to the outpatient lab at your local childrens hospital (sick kids or London children's) you shouldn't have to pay. I took all three of mine to Sick kids. I don't know how much use a ped will be with this unless its a ped GI doc. Really what you want ASAP is the blood work and any doc can order it. Its about $200 if you pay for it at a non-hospital lab in Ont. It would be very prudent to have the blood work in had when you see the ped isntead of waiting longer. She does need to be eating gluten in significant quantities to get a postive result.

You may just have to do the gluten-free thing yourself. An aquantance (sp) went down this road with her child. The child wasn't growning and they sent the kid off for testing. Wildly positive blood work and inconclusive biopsy and doc said keep eating gluten. I could not convice her that this was BAD for the child. Kid is now a teenager and their growth is stunted and eventuallly this poor child will be full blown celiac, of that I'm sure. If the mother had kept the child gluten-free, this poor kid could possibly avoid all the misery those of us who have been DX as adults have gone through.

[sand19]

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!!

[amber]

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!!

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.

[sand19]

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.

[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

[amber]

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

The reason that she needs to be eating gluten is that otherwise the blood test will not be accurate and could give you a false negative. How long did they say that she needs to be eating gluten? Maybe being a child they might agree to less time - a couple of weeks perhaps. I understand how difficult it must be to convince her to eat gluten and know that she will feel bad afterwards.

Perhaps she has been a celiac for a long time and it is a shame that they didn't get onto it earlier with her. Very frustrating for you as a parent. Has her growth been affected? Often celiac kids slow down in growth both in weight and height. My daughter went from the 50% percentile to the 10th but she was 2 years old. As soon as she went on the gluten free diet she bounced back and went back up to the 50% again. She is now 12 years old and a very healthy weight and height.

Good idea to give her the gluten foods in the evening as you said rather than before school.

Good luck with it all.

Did you ask about the gene test? I assume it is available in Canada.