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Testing On Toddlers
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Hi, me and my son have just been dignosed as celiac's (just got results on Wednesday) so still freaking out of how big of a change this all is and trying to rid gluten from my house to get on the road to recovery... I have one thing that I've been wondering about, I also have a 2 year old daughter (just turned 2 in February) and she hasn't been tested because our doctor told us that she was to young for it to be accurate. My whole house is going gluten free and I just wanted to see if I should get my daughter tested before gluten is out of her diet or if I should wait until she's older? She'll be getting gluten at daycare when I go back to work after the summer so she won't be entirely gluten free.... Also looking for any tips or suggestions on making this major transition.

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Welcome! Be sure to read the newbie thread about going gluten free. The tips are invaluable!

Since it is a holiday weekend, I am not sure you will get a good response from parents of small children. So please be patient! I did test my daughter who is 13 and she did not have any symptoms at all. Amazingly, she was negative and both of us have gluten issues. She will get retested in three years. I did not test her until I was sure it would not impact her health insurance (we are self-employed and she had her own policy.) Whew! There is some good with the Affordable Healthcare Act!

We maintain a gluten-free household, but I send her to school with prepackaged gluten foods or we stop for a burrito or pizza after school as a treat.

So, you could wait, but let us hear about the accuracy of testing in toddlers. I know nothing about that.

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Thanks for the reply I've been looking around the sure and will be sure to make it into the newbie thread! I will be sure to keep checking in for others input on this. This site seems like it will be a great help with all of this and there's so much to learn it's hurting my head trying to wrap it around all of it but there seems to be a great community here to help me get through the adjustment period :)

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Here are two of my favorite tips to speed healing:

1. Do not eat outside of the house until you are feeling well or have this gluten-free diet down pat. There will be days that you just do not want to cook. My fast food is Costco chicken, frozen veggies, and green salad. I also freeze meals to have on hand. Simple foods are best until your gut has healed.

2. Do not kiss any, but potentially slobbery children or spouses -- seriously. Coming back from day care? A quick soap and water wash is best. We have a doc with celiac disease and she was getting glutened by her small kids. My kid washes her hands as soon as she walks in the door.

3. Pamela's gluten-free flour makes terrific chocolate cookies and cupcakes. I have converted my old recipes cup for cup. Freeze and thaw when you need something for a school party, etc. go the extra mile for homage frosting!

4. Never leave the house without some gluten-free food with you. A gluten-free cereal bar, fruit leather...then you will be able to resist eating out and getting glutened. I carry a little ice chest. Got into the habit when my kid was small.

I wish I had really paid more attention to those tips in the newbie section and other advice given on this forum. Since my husband had been gluten-free for 13 years, I thought I had this celiac disease diet down. I did, but I had issues with processed and junk foods. I think it slowed down my recovery. Your son should improve much faster. Ah, youth!

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Welcome! I would recommend getting your toddler tested soon, before her system adjusts to a lot less gluten in her diet. Make sure they run both DGP tests (DGP-IgA and DGP-IgG) as well as the tTG test, since those may be more accurate in very young children. False negatives are certainly possible, especially at that age, so a negative result now would not rule out celiac forever. However, if she's positive that would be great to know sooner rather than later. Since it sounds like your doctor is aware that the tests aren't always accurate for kids, hopefully s/he be willing to repeat the tests every few years (or sooner if she develops symptoms). Aside from the pain of the blood draw - which is certainly never fun for a little one - it seems like there's no advantage to waiting until she's older. My daughter was diagnosed at age 4 and had strong positive on all three blood tests they ran, and I really wish she'd been tested much sooner. Good luck!

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Thanks for the tips, freezing meals sounds like a good idea for those nights I just don't feel like cooking or the late nights when I'd normally turn to a can of ravioli or ordering a pizza, I was told by a friend we have a good health food store not far from me that almost everything they sell is gluten free so I'm going to have to go check it out after the weekend :)

Greenbeanie- thanks I'll make an appt with our dr and ask for my daughter to be tested as well she is uassally pretty good at ordering the tests I request but I do have to pay for the blood work so I think it was more her trying to save me money. My daughter doesn't really show any signs as of yet other then some constipation, but I think that was also my sons first sign along with bouts of diarrhea but I never thought anything of it.

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I agree that it is a good idea to test her now while she still has adequate amounts of gluten in her diet for testing. You are correct that some young kids may get a false negative test, but most kids test fairly accurately .

 

If she does have a negative test, you should retest her every year or two anyways as celiac can develop at anytime in life, or it can finally become positive on the tests.... either way, things could change.

 

Definitely get the DGP IgA, DGP IgG, tTG IgA, tTG IgG, and total serum IgA run.  The EMA IgA is a good test too, especially if she ends up with a positive tTG IgA.

 

If she is showing signs of gluten sensitivity, and tests negative, you should consider making her 100% gluten-free anyways.  She could have non-celiac gluten intolerance (NCGI) but it's just as likely that she has early celiac disease and it just isn't showing up in the blood tests yet - sort of like taking a pregnancy test too early will show a negative if you test too soon even if you will deliver a bundle of joy in 9 months. KWIM?

 

Best wishes.

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Alright I'll be sure to push our dr to run the test and retest if needed, I've already considered talking to the daycare about it to see how we could work it to have her gluten free no matter what the tests say as I feel it would lessen the changes or CC for my son and I but it would be nice to know before hand that way if it is positive we won't need to make sure she's had enough gluten for long enough/ been kept on to have her tested again and causing her harm if she does have it and I'm really not sure how the daycare would work that my guess is I'd have to supply her food, dishes etc which wouldn't be a big deal as I already do that for my son at school so it's just making an extra lunch and snacks to send her but I'll have to talk with them first to know for sure

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    • First, do you have celiac disease?  I assume you do.  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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