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What Tests I Do Have Done On 1 Year Old?
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Hi!

My baby is about to turn 1, tomorrow we have his appointment. He has had gluten for a month (I am celiac). He has had no visible signs of celiac and enjoying oats and puffed wheat often. For baby one I wanted the genetics test but was told he should be on gluten for a month then get tested for a reaction of the gluten (I can't remember the test names). However this doesn't tell me if he could get celiac in the future.

Anyway, would love to know what others recommend I should or shouldn't get the baby tested for with his 1 year blood work. Are there any resources available I could show his doctor? Their doctor is happy to read extra information etc.

Thanks. Typed with a 2 year old grabbing phone, sorry about mistakes.

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The tests for children are the same as for adults.  And, your right, if they are negative, you would have to keep testing throughout childhood.   If, however,  you choose to bring him up gluten free, the child would need to eat gluten before testing just like you have.  

 

Colleen 

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Gluten does not need to be consumed for the GENETIC test.  That can be done at any time.  All the rest need to be while on gluten. It's highly debated how much and for how long.  If the tests are negative, it is recommended they they be retested every 3 years OR if they become symptomatic. 

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We test our kids yearly.  They have run the celiac panel test on them each year.  We started around a year and a half and have done it every fall since my oldest was little.  Two are positive so far, two are not.  My husband is the Celiac, I am not.  I have allowed kids at home with me to have gluten when my husband was at work and when my oldest was at school, once he tested positive.  We now no longer allow gluten in the house, because the two youngest are at school and will have it there (school provides snack).  If they are going to test positive, that's enough exposure.  Once they go to K and bring their own snacks, we will send them to school with an occasional gluten snack to keep it in their systems to see what happens.  We really wonder how many will eventually have it.  I'm betting 3/4.

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We now no longer allow gluten in the house, because the two youngest are at school and will have it there (school provides snack).  If they are going to test positive, that's enough exposure.  

 

Can you provide references for this statement?  I have never seen anything concert on how much or for how long.  Standard recommendation I've seen tossed around here is a slice of bread daily for 2-3 months prior to testing.  

 

I'm surprised your insurance covers testing yearly. They usually follow recommendations from the Docs who say every 3 years.

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I've never heard of insurance companies refusing to pay, but this is my first time on a celiac board. Mine has never questioned it, so I assumed it was typical. My husbands gastro recommended we do this and our ped and pediatric gastro have agreed, so this is just how we have always done it. We have always had them eat gluten until they test positive, because out feeling is it keeps it in their systems which would trigger the response. Again, this isn't anything we've read it's just what we were recommended so we've done it this way. I have no reason to purposely keep my non celiac kids gluten-free, so if they have gluten at school or other places, I'm fine with it. Tey don't have it in our house. We waited over a year for our first two and then introduced the second two just prior to six months, based on new information we had read. Wee shall see if that changes anything. I don't believe it will. I honesty believe if you are going to get it, you're going to get it. My husband feels huge guilt about this, but it is what it is. It could be so much worse.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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