Quick Reply Needed - What Tests For 2.5 Yo?

[Aly1]

This is something I'd intended to research myself but we've all been sick here and now I'm out of time.

Tomorrow morning at 10 I have an appointment with my 2.5 year old daughter's pediatrician and I want to ask for her to be tested. This ped is young and I anticipate he'll be totally clueless about celiac and gluten intolerance. I need to know what to ask for test-wise, to make sure she is fully tested before we attempt a gluten-free diet with her.

Also, if you have any advice on how best to approach the topic with him I'd appreciate that too. He is a nice guy and doesn't seem to have a big ego so I think he'll hear me out. (I tested negative for celiac but appear to have peripheral neuropathy due to gluten intolerance. I am long accustomed to docs not believing me so I'm a bit insecure about dealing with this doc tomorrow...would be easier if I could say I was diagnosed with celiac, but that would be lying...)

Last question: Might he be willing to do gene testing right off the bat? I don't want her to be needled twice and would like that information about her...)

Thanks for any-last minute replies!

[Mizzo]

You can approach it from the " There is Gluten intolerance in the immediate family "yourself" and you feel strongly he should be tested before an elimination diet is suggested which would askew any Celiac blood tests down the road"

I doubt he will do gene testing as it very expensive and he probably wants to see blood work results first. BTW Gene testing can be done with a mouth swab.

good luck

[Aly1]

Thanks for the advice!

What specific tests should I make sure she gets done?

[MitziG]

IgA, Total Iga, Igg and Ttg...make sure he does the total IGA as it is often left out of the standard celiac panel. A fair amount of celiacs are IGA deficient, and that can cause a false negative reading.

as for "lying"....one of the lead researchers for celiac disease who initially insisted on biopsy as being the "gold standard" recently stated in gluten free living magazine that not only is positive serology sufficient for a celiac dx, but that he also feels "gluten intolerance" is ALSO Celiac disease, that has not yet fully manifested in severity as to provide positive serology.

I would just say you have celiac disease, period. It is none of his business how you came to that conclusion, and I can almost guarantee you, he knows very little about it anyway. I only WISH I had been more assertive at my kids appts- and my own. Our dx would not have been delayed for years and we would not be dealing with the issues we are now. You have the perfect chance to stop this disease in its tracks- don't miss it.

[Aly1]

Thanks so much for the advice and information - it definitely came in handy as he was just going to do the standard tests which did not include the ttg one and another one you listed.

It was so hard to hold my little girl while this woman took her blood - I remember that same woman taking my blood last year and it was one of the worst I've ever had (and believe me I've had plenty!). So I had to hold her down while she cried and begged "mommy mommy!!" over and over again. We are both thoroughly traumatized. What sucks is no doubt these tests will all come back negative - mine did - and she will go gluten-free anyway. But I had to give her the chance at being dx'd now while she's on gluten. IF she does have a problem with it this will be all worth it, but man it was rough on us both .

[MitziG]

Thanks so much for the advice and information - it definitely came in handy as he was just going to do the standard tests which did not include the ttg one and another one you listed.

It was so hard to hold my little girl while this woman took her blood - I remember that same woman taking my blood last year and it was one of the worst I've ever had (and believe me I've had plenty!). So I had to hold her down while she cried and begged "mommy mommy!!" over and over again. We are both thoroughly traumatized. What sucks is no doubt these tests will all come back negative - mine did - and she will go gluten-free anyway. But I had to give her the chance at being dx'd now while she's on gluten. IF she does have a problem with it this will be all worth it, but man it was rough on us both .

That is the worst- and every parent on here can relate to it! My little boy is fond of screaming out "Why are you doing this to me?! Dont you love me?!" Every time we have to draw blood. It is So hard! But good for you for following through. And yes, most likely the tests will be negative, especially because she is so young, but it is all you can do! If I were to have another child, they would NEVER get gluten, period. With our family history, it is just not worth it.

[Aly1]

Thanks so much MitziG for your reply - I can't believe your son says that to you!! That would kill me. I do feel so much guilt because her symptoms are vague and easily Not related to gluten. But gluten has made me so sick for much of my adult life, and I lost the last 10 years of my life going undiagnosed (like many people here!) and can't bear to just wait and see if it manifests itself in her. But the first thing my mom says after the test today was "why is she being tested for celiac??". A couple of weeks ago when I mentioned I was going to take her gluten-free she said "why would you want to do that to her??".

Half the time I really doubt myself, like I'm being a hypochondriac on my daughter's behalf. She's in the 5th percentile for height and weight but always has been so maybe she's just little. She had beautiful rosie cheeks until she started solids, and has been pasty pale ever since, with dark circles under eyes all the time. She shares my blood sugar problem and already we know we have to feed her by a set schedule or she melts down - just like me. She just seems so much like me physically and since I was a tiny, pale child with no other symptoms, I fear she may have the gluten issue like me. It took half a lifetime for me to figure out my health issues and a lot of damage had been done. I just want to (theoretically) spare her from what I've been through. I just hope that I'm not putting all my paranoia on to her and torturing her with traumatic tests for no good reason.

Anyway I guess that was a bit of a vent, I was feeling bad about how the blood test went and my mom just compounded it. Thanks for "listening"!

[GFSAHmom]

There is a cream you can get from your dr. that Needs to be applied 1 hr before the blood draw then again 20min before the blood draw. They won't feel a thing! We used it for my 2.5yr old son and he watched the nurse do the whole procedure and never flinched It was a pain free experience!

[Aly1]

OB I wish we'd had that, it was a terrible blood draw . Next time.

[StephanieL]

Open Original Shared Link

This is a big hit in the allergy community! Maybe worth looking into for the future.

[Aly1]

Open Original Shared Link

This is a big hit in the allergy community! Maybe worth looking into for the future.

Oh he's so cute!! Thanks!