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Help, Just Got The News

mbg98

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mbg98 Contributor
mbg98
Posted

Hello, I am still so upset, I just spoke with my kids doctor to find out there blood test results. Both had normal IgA tests but my oldest son had barley (like 2 points above normal) positive Ttg test (he is 6). So his pediatrician is going to consult with a pediatric Gi doc before he goes gluten-free, Never had any growth issues he has always been on off the charts as far as size, but he was diagnosed as an ADHD kid and put on Adderol daily which has since made his weight drop down, he has always had very large hard to pass bowel movements and alot of anxiety issues. But now my other Child (3) had a very high positive tTg test result (all the doc told me was it was in the hundreds) So at this point I am waiting to hear back from the pediatrician on what my next step should be. I don't want to have them go gluten-free only to hear the pediatric GI specialist wants them retested or endoscopies done and then I have to reintroduce Gluten.

I am just so worried about how they are going to handle this (gluten-free), Is there a good book on how to deal with Kids that have Celiac ( i was only diagnosed the end of Feb. and am still having trouble grasping the whole thing!) Do you have the kids go gluten-free cold turkey or do you slowly introduce gluten-free products?

Please any advice would be appreciated!

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Guest elysealec
Guest elysealec
Posted
Hello, I am still so upset, I just spoke with my kids doctor to find out there blood test results. Both had normal IgA tests but my oldest son had barley (like 2 points above normal) positive Ttg test (he is 6). So his pediatrician is going to consult with a pediatric Gi doc before he goes gluten-free, Never had any growth issues he has always been on off the charts as far as size, but he was diagnosed as an ADHD kid and put on Adderol daily which has since made his weight drop down, he has always had very large hard to pass bowel movements and alot of anxiety issues. But now my other Child (3) had a very high positive tTg test result (all the doc told me was it was in the hundreds) So at this point I am waiting to hear back from the pediatrician on what my next step should be. I don't want to have them go gluten-free only to hear the pediatric GI specialist wants them retested or endoscopies done and then I have to reintroduce Gluten.

I am just so worried about how they are going to handle this (gluten-free), Is there a good book on how to deal with Kids that have Celiac ( i was only diagnosed the end of Feb. and am still having trouble grasping the whole thing!) Do you have the kids go gluten-free cold turkey or do you slowly introduce gluten-free products?

Please any advice would be appreciated!

I was diagnosed and I had my three kids tested. My one had been off the charts, but had anxiety issues and was being tested for learning disabilities. Her bloodwork was positive. I was told to wait and see because she did not have classic symptoms and there must be some mistake. I contacted a ped GI myself who specialized in celiac disease. He wanted to do the endoscopy immediately. The endoscopy showed significant damage. She went gluten free and anxiety and learning issues disappeared. We went totally gluten free and it took awhile to find good food. Now there are many items I can't keed my other kids away from. Pamela's Brownies, Ener G pretzels, to name a few. My daughter has not had a problem adjusting. She was spoken to at the GI's office by the doctor and a nutritionist and understands the significance of going off her diet and how she may harm herself. I am very grateful for that since she does not have GI issues. She was seven at the time. Good luck.

Guhlia Rising Star
Guhlia
Posted

I'm so sorry to hear about the kid(s). Don't worry, it WILL get easier. We've been gluten free for two years now and frankly, I don't even miss gluten anymore. I've found tasty substitutes for everything by now and honestly, my gluten free stuff is WAY better than the gluten stuff.

My daughter doesn't have celiac, or at least hasn't been diagnosed or tested yet. However, I've been preparing, just in case. I bought myself the Incredible Edible Gluten Free Food cookbook and Living Gluten-Free for Dummies. Both are valuable resources both for adults with celiac and for parents of children with celiac. The cookbook has AMAZING recipes that so closely resemble the real thing you and your children probably won't notice the difference. I didn't. It even includes recipes for things like pancakes, chicken nuggets, pizza, cake, pie, cookies - all the things you thought your kids could never have again.

I would highly recommend going gluten free immediately. If you slowly introduce gluten free foods while still feeding him/her gluten then you're still allowing his body to be damaged even further. It's very important that you start him gluten free right away. Kids are resilient and he probably won't even notice too much of a change, especially if you use a good gluten free cookbook to replace the bread staples in his diet.

Honestly, once he's gluten free for a while, he will feel so much better. It's SO worth it! I think you'll be surprised at how quickly the constipation and the ADHD subside or at least lessen.

Good luck!!!

mbg98 Contributor
mbg98
Posted
  • Author

Out of curiosity, does it happen alot that IgA tests are negative and tTg tests are positive? Thats the way mine were and my doctor says the tTg test is more accurate. Anyone else?

mmaccartney Explorer
mmaccartney
Posted
Out of curiosity, does it happen alot that IgA tests are negative and tTg tests are positive? Thats the way mine were and my doctor says the tTg test is more accurate. Anyone else?

You child shoud be checked for IgA deficiency. This could be the cause of the neg IgA and pos ttg. I will tell you that either way, with the positive ttg the ped GI will want to do an endoscopy and obtain biopsies.

Only my IgA blood test was pos, ttg was neg. Stool test (Enterolab) showed both positive.

As far as your kids, it is your call, but here is what I did. When I found out I had celiac we eliminated gluten from our household completely. At the same time we had the celiac panel bloodwork done. Only my 1st son had a pos IgG, nothing else. My children still had gluten when outside of the home, but not very frequently. As we began to notice some symptoms of reactions to gluten in them we have made them gluten free.

I just received my test kits for the children from Enterolab yesterday. I don't care what the Ped GI wants to do next, I refuse to submit my children to anethesia and endoscopy when I know non-invasive test procedures are available. Some docs take Enterolabs testing, some consider it hogwash. However it seems that those that are most knowledgable about Celiac accept their test results, and those that don't know much about celiac won't...

thats my 2 cents!

mbg98 Contributor
mbg98
Posted
  • Author
You child shoud be checked for IgA deficiency. This could be the cause of the neg IgA and pos ttg. I will tell you that either way, with the positive ttg the ped GI will want to do an endoscopy and obtain biopsies.

Only my IgA blood test was pos, ttg was neg. Stool test (Enterolab) showed both positive.

As far as your kids, it is your call, but here is what I did. When I found out I had celiac we eliminated gluten from our household completely. At the same time we had the celiac panel bloodwork done. Only my 1st son had a pos IgG, nothing else. My children still had gluten when outside of the home, but not very frequently. As we began to notice some symptoms of reactions to gluten in them we have made them gluten free.

I just received my test kits for the children from Enterolab yesterday. I don't care what the Ped GI wants to do next, I refuse to submit my children to anethesia and endoscopy when I know non-invasive test procedures are available. Some docs take Enterolabs testing, some consider it hogwash. However it seems that those that are most knowledgable about Celiac accept their test results, and those that don't know much about celiac won't...

thats my 2 cents!

What is an Iga deficiency mean? I thought it to be a little wierd that all 3 of our tests came back IgA negative but Ttg positive. I am hoping my kids do not have to go through the endoscopy, it was bad enough making them have there blood taken.

TCA Contributor
TCA
Posted

I just wanted to offer a foods list that I keep for my 3 year old. Just PM mw wit hyour e-mail address and I'll send it if you're interested. Good luck with the diagnosis!

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