I'm Starting My 5 Y.o. On A gluten-free Trial

[horsegirl]

I was diagnosed with gluten intolerance (thru Enterolab as well as elimination diet) 2+ years ago.

I also have other food intolerances. I'm managing quite well, & have been able to reintroduce eggs.

My 5 y.o. DD has had chronic constipation since age 2, as well as frequent tummy aches & lots of gas. She seems to tire easily, has some anxiety/mood swings, though is generally an amazingly happy child. She was tested (blood) through Prometheus labs a year ago (their Celiac Plus panel), & was still within normal range on the gluten antibodies. She does possess 1 copy of the HLA-DQ8 gene (which she had to get from my DH because I'm double DQ-1, & I have no DQ8 at all). We've tried lots of things to try to manage the constipation/GI symptoms, including Miralax (when it gets bad enough), a short dairy elimination trial (with some success), & daily prunes. With her pediatrician's agreement, we've decided to start the gluten-free trial with her tomorrow, for a month. She already eats gluten-free more than 50% of the time, since that's how I cook. She also frequently makes gluten-free choices on her own (breads, snacks).

Now we're making everything 100% gluten-free for a month, to see what effects it has on her GI & other symptoms. She's in total agreement with it, & even asked to do it because she's tired of tummy aches.

My question though is, do we really need to put her through any other tests for gluten intolerance/celiac disease (other blood tests, EGD)? My feeling is, I know she's at risk because I'm already diagnosed, & she has several symptoms. I don't need a "formal" diagnosis for her, do I? Or is seeing any positive changes on the elimination trial enough?

Any suggestions or ideas would be appreciated.

[horsegirl]

I guess when I post so late at night (west coast time) it gets lost in the new posts!

Anybody have any suggestions or advice?

Thanks again.

[Darn210]

If your pediatrician is on board with it, then I think you should be good. If you find that your daughter needs to be gluten free and you have trouble with the school system (that's really the only thing I can think of), then you've got your pediatrician backing you up.

[sugarsue]

Since it's fairly non-invasive, I would do a celiac panel blood test if you have not already done it and then go gluten free. I have one dd with a positive gluten intolerance test and one with negative. Both are gluren free now and doing amazingly. There is no doubt in my mind that they need to be gluten free. I do struggle sometimes whether they have celiac but if they/we need to figure that out when they get older we can cross that bridge.

So many people think you need gluten to be healthy and it's just not true so your child will be better off with your family history and her history.

GOOD LUCK!

[I hate gluten]

Since she has already been tested and carrys one of the Genes and is starting to be sympomatical, I would do it. I did do the panel on my son and he was neg but have seen a life changing difference in him since going gluten free anyway. (my family has a long history of autoimmune dz, I also went gluten free after a neg blood test and it has been a life saver.) I saw a gi doctor on my peds request for the celiac panel, and have not seen my ped since. I will be going to him in may with my child (5 also) check up and a list of major quality of life improvements that we have been struggleing with for years. As you prob. already know, if it is a gluten intol. there may also be a casien intol. I will be giving up casien- milk- on both of us after three month. ( I know I am having problems with it, but thats what they say is ideal to wait 3 months after starting the diet) my childs school has been great, but he is still in preschool. I talked to his k and they seem to be on board as well. One month is not going to hurt anything other than results on a blood test. Good luck in your decision.

[Jestgar]

Since it's fairly non-invasive, I would do a celiac panel blood test if you have not already done it and then go gluten free.

This is a good thought, but since she's mostly gluten-free already, a negative result wouldn't really tell you much. If your doc is backing you, I say just go with the diet.

[MammaG]

Do the diet. There really isn't much else to say. You are Celiac she has the gene and is having symptoms- It would be hard to say she doesn't have it. If you really want something else to test then do the poop test like you did through enterolab. -I did it for me and my son. But I think you already know what you'll find out.

[626Belle]

I agree with your decision to test out the diet.

I don't have kids, but a year ago, I started having these horrible symptoms. My blood panel came back negative for celiac, but I had also been gluten free for 2 weeks already because I was absolutely miserable and finally something was working. I'm not going back anytime soon for testing because I would have to endure that pain again just to hope for a diagnosis.

[horsegirl]

I'm curious to see why you say I'm celiac? Just wondering, because since my bloodwork & biopsy were both negative, my doctor diagnosed me with "non-celiac gluten intolerance". I don't know that there's truly a difference between the 2 titles, & I know that with my neurological problems on gluten, I'll never eat the stuff again.

Like I said, just curious, since you're the first one to say I have actual celiac.