[Wolicki]

Hi all,
I was dx in June with Celiacs. I suspected my youngest may be as well, because of minor GI symptoms. I got their test results back today. My 12 year old had no positives, but my 9 year old had positive Gliadin IgG Antibodies of 38.3 (ref range >10 positive. Transglutimase and Enodmysial antbodies negative, IgA negative. He is also low Ferritin ( 13 with a ref of 25-329) and B12 is low normal with 598 (ref range 210-925).

I think this is a positive, yes?

If so, can you all give me your best advice for dealing with school and Gluten-Free? I am thinking of cupcakes and cookies offered at celebrations, sharing lunches, etc. and am saying Ackkkkkkk!

Any thoughts would be appreciated! Also, your thoughts on having him go through an endoscopy?

[momxyz]

Wolicki, on Oct 16 2009, 03:53 PM, said:

Hi all,
I was dx in June with Celiacs. I suspected my youngest may be as well, because of minor GI symptoms. I got their test results back today. My 12 year old had no positives, but my 9 year old had positive Gliadin IgG Antibodies of 38.3 (ref range >10 positive. Transglutimase and Enodmysial antbodies negative, IgA negative. He is also low Ferritin ( 13 with a ref of 25-329) and B12 is low normal with 598 (ref range 210-925).

I think this is a positive, yes?

If so, can you all give me your best advice for dealing with school and Gluten-Free? I am thinking of cupcakes and cookies offered at celebrations, sharing lunches, etc. and am saying Ackkkkkkk!

Any thoughts would be appreciated! Also, your thoughts on having him go through an endoscopy?

Did he have a total IgA run as well? If the Total IgA is below normal, then these IgA results may be falsely negative. I have read that the anti Gliadin IgG is considered a senisitive but not very specific indicator (ie, it can be positive in the absence of celiac disease.) My daughter had bloodwork, upper GI, lower GI, and her only positive finding was a slightly elevated anti Gliadin IgG. They did not consider this conclusive enough and told us she did not have to worry about wheat. That was 6 1/2 years ago; her GI symptoms were pretty minor too although her growth rate had fallen off. This past year she experienced other problems which lead me to do research and brought me to this board. I wish I had known then everything I know now.

I will be very interested to hear how your doctors interpret the blood tests. If they recommend the endoscopy, in your shoes I would probably follow through in hopes of obtaining a conclusive diagnosis. My daughter tolerated the procedures very well.

BTW, how were you diagnosed? If you were diagnosed through the avenues that are considered "standard" - positive bloodwork + positive biopsy, then I am wondering if they might consider his bloodwork and GI symptoms enough to establish a diagnosis.

Please let us know how things go.

For future reference, you should try Betty Crockers gluten free brownies!

[Wolicki]

momxyz, on Oct 16 2009, 01:11 PM, said:

Did he have a total IgA run as well? If the Total IgA is below normal, then these IgA results may be falsely negative. I have read that the anti Gliadin IgG is considered a senisitive but not very specific indicator (ie, it can be positive in the absence of celiac disease.) My daughter had bloodwork, upper GI, lower GI, and her only positive finding was a slightly elevated anti Gliadin IgG. They did not consider this conclusive enough and told us she did not have to worry about wheat. That was 6 1/2 years ago; her GI symptoms were pretty minor too although her growth rate had fallen off. This past year she experienced other problems which lead me to do research and brought me to this board. I wish I had known then everything I know now.

I will be very interested to hear how your doctors interpret the blood tests. If they recommend the endoscopy, in your shoes I would probably follow through in hopes of obtaining a conclusive diagnosis. My daughter tolerated the procedures very well.

BTW, how were you diagnosed? If you were diagnosed through the avenues that are considered "standard" - positive bloodwork + positive biopsy, then I am wondering if they might consider his bloodwork and GI symptoms enough to establish a diagnosis.

Please let us know how things go.

For future reference, you should try Betty Crockers gluten free brownies!

THanks for the info! I am sure my doctor will not recommend anything, as none of them have any clue about Celiacs It's been quite a journey. I was dx through positive blood work and immediate response to gluten-free diet. I am really torn about the endo. I am thinking to give the diet a try and then we'll know. Our house is already 65% gluten-free, give or take, so it wouldn't be a huge change for him. Plus, he has ADHD, and the diet may help.

[momxyz]

Wolicki, on Oct 16 2009, 07:03 PM, said:

THanks for the info! I am sure my doctor will not recommend anything, as none of them have any clue about Celiacs It's been quite a journey. I was dx through positive blood work and immediate response to gluten-free diet. I am really torn about the endo. I am thinking to give the diet a try and then we'll know. Our house is already 65% gluten-free, give or take, so it wouldn't be a huge change for him. Plus, he has ADHD, and the diet may help.

Well talk to your doctor first. Let him know about your diagnosis; it will add to the level of suspicion for your son.

I understand your feelings about the endo too. My daughter was 11 when we went through all that. When she had her problems this past year, going gluten free definitely resolved the insomnia and the contipation. The depression improved tho she still had some anxiety. But yes diet did make a positive difference for her

good luck and keep us posted!

[Wolicki]

momxyz, on Oct 16 2009, 04:29 PM, said:

Well talk to your doctor first. Let him know about your diagnosis; it will add to the level of suspicion for your son.

I understand your feelings about the endo too. My daughter was 11 when we went through all that. When she had her problems this past year, going gluten free definitely resolved the insomnia and the contipation. The depression improved tho she still had some anxiety. But yes diet did make a positive difference for her

good luck and keep us posted!

Thanks for the support

[Yup]

I'm in the midst to see if my little one is Celiac. Her blood work was negative, but so was mine. The doctor here in Calgary said that he is diagnosing more silent celiac patients then ever before. The Children's hospital just did a test of 1000 children and 17 came back as positive for celiac. That is 1 in 58!

[Wolicki]

Miila's Mom, on Oct 16 2009, 11:08 PM, said:

I'm in the midst to see if my little one is Celiac. Her blood work was negative, but so was mine. The doctor here in Calgary said that he is diagnosing more silent celiac patients then ever before. The Children's hospital just did a test of 1000 children and 17 came back as positive for celiac. That is 1 in 58!

It's frightening isn't it? Update on my youngest:
I had a talk with him last night. He has been so great since my diagnosis. When we go shopping, he points out gluten free items in the store, tells everyone that gluten is the enemy, etc., it's very cute. So last night when I picked him up from school, we went tot he vending machine, and I asked him to identify the products that contained gluten. Out of 24 products, he correctly identified 20! I was so proud of him! So I decided to discuss his blood tests with him. At first he was upset (the boy loves his carbs!). Then I explained the options: diet or endo. He chose the diet.
I happened to have some gluten-free Udi's pizza crusts, so I made him a nice little pizza and he was very happy. I had a loaf of "Tapioca Loaf" in the fridge, that I find absolutely digusting, but he enjoyed it with some pb&j. He had some rice cakes for breakfast, then came to me with an apple and a banana and said "see Mommy! I am gluten free too!" I almost cried.
My little trooper is gonna be just fine. I think it may help his ADHD as well.
I am sad that he has this dx (unofficially) but glad that we can be proactive now and prevent him from experieincing the pain and suffering I endured for 10 years.

[Rondar2001]

Miila's Mom, on Oct 17 2009, 12:08 AM, said:

I'm in the midst to see if my little one is Celiac. Her blood work was negative, but so was mine. The doctor here in Calgary said that he is diagnosing more silent celiac patients then ever before. The Children's hospital just did a test of 1000 children and 17 came back as positive for celiac. That is 1 in 58!

Hi,

I am in Calgary as well. Just to let you know the Children's hospital has been great with us. You can always message me if you need any local help.

Darby

[Darissa]

My daughter was 9 when she was dx also. It does sound like a positive Dx for celiac disease according to her blood test. We did the biopsy right after we got the results of the blood test back before she went on a gluten-free diet. That way later on in life, there will be no question rather she has celiac disease or not. Also, it was nice to know about the damage that was done in the colon also and we wouldn't of known without the scope. She did great with the scope. We went to Phoenix Childrens Hospital and they treated her wonderfully! SHe didn't have any bad side effects of the scope.

About the school thing. We keep a bag of treats at the school with the teacher, so that way when there is bday parties or other events, she can choose her own treat. (We have skittles, welch's fruit snacks, smarties, hersehy's chocolate bars, envirokids bars, dum dum suckers, juice boxes and what ever else you little one likes) Also, the teacher is great about letting me know if there is going to be a party prior to the party and I send with her her own gluten-free cupcake or brownie. Last year at the end of school I even brought in a Gluten Free Pizza at the start of the party so she could have pizza with everyone else!

For lunches we use a hot Thermos Brand thermos and she takes homemade chicken soup. I make a big batch every few weeks and freeze it in individual contianers and warm them up each morning. We also do fruit salad with yogurt, ham and cheese roll ups, gluten-free pretzels or tortilla chips, veggies.

It gets easier. My daughter has adjusted really well. She feels so much better that shes not even tempted to eat gluten food because it made her so sick. Good luck!

[Wolicki]

UPDATE
So, I started my Joey on a gluten-free diet one week ago. He's adjusting well! At school on Thursday, a volunteer gave the kids Red Vines. He spent the afternoon with a headache and vomiting The good news in that he know now this is for real, and is actively avoiding gluten, instead of just going along because I said so.
i was suprised that he had such a big reaction after only one week, but I am so glad he wont have to deal with the years of suffering that I did. He has his safe candy list taped to his desk