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Kids Tested Positive For Celiac

SanteeBay

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SanteeBay Rookie
SanteeBay
Posted

Hi All,

I just got the results back from my kids Celiac testing. They all have the HLADQ2 gene and 2 of the 5 have Celiac. I was wondering if they need to see a gastroenterologist, our primary doc ordered the test and doesn't know much about Celiac. I also am Celiac and have my own gastro doc but he isn't a pediatric doc. We are all new to this so I am not sure what to do next. Thanks for any information.

Melanie

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rez Apprentice
rez
Posted

Just because you have the gene, doesn't mean you have Celiac. 30% of the population has the genetic make-up for it. Have them run a tTG, total IGA and EMA. THat is what they need to do to check to see if they actually HAVE active Celiac. Good luck.

chrissy Collaborator
chrissy
Posted

melanie, if it were me, i would take the kids to a ped gastro. you already have the tests to confirm the diagnosis, but you may find it helpful in the future to already have a ped gi should any problems arise. if your kids are already established patients, the wait time might be less to get in for a problem. the doc might also be willing just to talk to you on the phone sometimes if your kids are already his patients.

SanteeBay Rookie
SanteeBay
Posted
  • Author
Hi All,

I just got the results back from my kids Celiac testing. They all have the HLADQ2 gene and 2 of the 5 have Celiac. I was wondering if they need to see a gastroenterologist, our primary doc ordered the test and doesn't know much about Celiac. I also am Celiac and have my own gastro doc but he isn't a pediatric doc. We are all new to this so I am not sure what to do next. Thanks for any information.

Melanie

Yes, they did run the TTG EMA IGA IGG, and those were positive on 2 of the 5. My GI doc said that as far as the others go that only have the gene to go ahead and have them eat gluten free since the celiac disease might just be dormant at this time.

SanteeBay Rookie
SanteeBay
Posted
  • Author
melanie, if it were me, i would take the kids to a ped gastro. you already have the tests to confirm the diagnosis, but you may find it helpful in the future to already have a ped gi should any problems arise. if your kids are already established patients, the wait time might be less to get in for a problem. the doc might also be willing just to talk to you on the phone sometimes if your kids are already his patients.

Thanks Chrissy,

I was thinking the same thing in case we run into problems later on. I am turning the whole household gluten free so hopefully things will go smoothly. Do you all eat gluten free? Did your kids get celiac disease from you or their father? My kids aren't too happy with me for passing this onto them! I am just glad they didn't have to live as long as I did without knowing.

chrissy Collaborator
chrissy
Posted

melanie, we don't know yet which of us carries the celiac gene (or genes). i am hoping to get our test results some time soon here----we are part of a celiac study and they are doing the testing for us. our meals are gluten free, but i do buy cereal, crackers and bread for the rest of the family. (there are 9 of us at home). our ped gi has told me that we might possibly help to keep the rest of the kids from becoming celiac by keeping them gluten light. (i think that is just his theory) i am a little concerned about my youngest (3 years) because she has enamel hypoplasia. so far she has tested negative, but she is a little young for tests to be totally accurate. i don't want to test her again very soon because i repeatedly hear from her (when we get in the car) "i don't want to be hurt" "i don't want to be poke". she has had a few health problems and had a couple of surgeries, plus tests and blood draws and immunizations. she is getting a little gun-shy. our ped gi had never even seen one of my kids as a patient when he diagnosed her with celiac----he had run tests on the whole family for us because one of my girls had had a positive celiac screen and an iffy biopsy. i took all 3 girls in for an appt. with him just to let him talk to them about celiac and the seriousness of it and the importance of following the diet very closely----this also officially put all three girls in his records. he is about 2 1/2 hours away from us and has been really good about phone calls with me and sending test orders to our local hospital. hopefully you can find a doctor you are as happy with as we are with ours.

how old are your kids?

SanteeBay Rookie
SanteeBay
Posted
  • Author

Hi Chrissy,

Wow, you seem to have as many people in your house as I have. I have 6 kids,5 boys/1girl. They are 22,20,18,14,12,11. My oldest doesn't live with us any longer and has is own medical insurance so he hasn't been tested yet. I did call my GI doc yesterday and he said it would be wise for all of them to be gluten free since they all carry the HLADQ2 gene. He said it might just be dormant at this time. How many kids do you have? I can't figure out how to add all the little comments like most people have at the bottom of their posts? Where are you located? We live in San Diego.

Melanie

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chrissy Collaborator
chrissy
Posted

we have 11 kids. 2 of "his", 2 of "mine", and 7 of "ours". our kids ages are: 31, 28, 23, 21, 17, 15, 15, 11, 9, 7, 3. the 3 kids with celiac and the one with the gene are all "ours", so it gave us no indication of which of us is carrying the gene. we live in burley, idaho. it is a small town right on the snake river.

to put a signature with info below your post click on "my controls" --on the left there is a section called personal profile, under that you will see "edit signature".

happygirl Collaborator
happygirl
Posted

Chrissy:

WOW! I knew you had a big family.......but WOW! :D

Melanie:

One of the main reasons that you would want a GI is if you want to have your children biopsied. Regardless of your decision of this, it might be good to establish a relationship with a local GI, in case your children do not do as well on a gluten free diet as hoped. (i.e., if a year down the road, they are still having problems, might need to be re-biopsied, etc).

Best of luck!

Laura

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