What To Do With My 5 And 7 Year Olds

[BlessedMommy]

So, I'm gluten free without a diagnosis. My story is below in my signature. A few years ago, my kids were suffering from skin issues (eczema, etc.) and I took them to the doctor and asks for blood tests for allergies.

 

The doctor said that the best way to DX allergies is through an elimination diet and declined to run any tests. I took them to a naturopath and she said gluten and dairy intolerance so I worked on cutting out things. Their skin improved. My oldest gets a painful raw rash around her mouth when exposed to gluten. (has no response to CC though, it actually has to be a substantial amount, like say 1/4 of a slice of bread or so)

 

My 5 year old has very little reaction at all, in other words, after a couple of days eating something with gluten in it, he will start breaking out in a rash.

 

My 7 year old has vitiligo, which may or may not be related to the gluten. Who knows?

 

Anyway, they've been loosely away from gluten since the fall of 2009, basically to the degree that is needed to keep their skin flare ups at bay. Their diet has not been "celiac strict" by any means.

 

I regret listening to that doctor's advice, because honestly at this point, I don't know if they have a minor sensitivity to wheat or celiac disease. Honestly, I wouldn't suggest anyone try to put their kid on a gluten-free diet without a doctor's dx, because controlling what goes in your own mouth is one thing, but doing your kid's diet is a whole different ball park! It's easier to justify to people how strict I need to be with my diet, since I've had a TIA from eating gluten.

 

My mother-in-law suggested that if my daughter wants to eat gluten when she's older that she could buy make up to hide the skin rash. That suggests that people won't really take the kids need to follow any diet seriously unless there's some sort of medical diagnosis.

 

So, after having the kids mostly off of gluten for 4+ years, what options do I have? Should I do a 12 week gluten challenge and then take them to a private lab for blood testing, since my doctor won't send them for tests? 

 

Knowing what I know now, I would have never had my kids do any semblance of gluten-free without tests, but I have to work with today, not what I should've done yesterday.

 

My youngest child is almost 2 years old and does eat a typical gluten containing diet (though not gluten heavy) and has no symptoms of any problems so far.

[frieze]

• have you asked your ped about celiac testing?  it isn't an allergy.  totally different testing.  good luck

[snowmom]

Yes, if you want a firm answer on whether they have celiac, you will have to reintroduce gluten and do some testing. Can you go to another pediatrician for advice on this, including how much gluten and how long to do the gluten challenge? I don't know how reliable the private lab tests are; the gold standard is a blood antibody test, typically followed by a biopsy (though some GI docs are apparently a little looser on requiring the biopsy in kids if antibody levels after consuming gluten are very high).

 

It sounds like you got bad advice from the first doctor. When we got my younger non-celiac child tested recently, all we had to was ask for our ped to order the blood draw, and she was happy to oblige even though DS had no major gi symptoms. I agree with you that a celiac diagnosis or a doctor's opinion on gluten intolerance will help get other caregivers (schools, relatives) to take it seriously.

[BlessedMommy]

I believe that you can get the celiac blood panel through a private lab.

[snowmom]

I'm pretty new here (dd just dx-ed in December). Maybe one of the veteran moms can chime in and offer some suggestions about private labs, their reliability, and which blood panels to seek. 

[africanqueen99]

Your physicians work for you.  I would let them know your concerns and tell them the tests you would like run. 

 

But this is coming from a woman that has happily "fired" a few doctors in her day...