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Has anyone else had symptoms come and go in their children? The first red flag for our daughter was when she was spitting up/vomiting daily for weeks... starting at 13 months. (She did have reflux pretty badly as an infant, but it had gone away for a while.) Between that, her small size and big belly, her negative food allergy tests, and no response from eliminating lactose, her doc. suggested testing for Celiac. But, since this process started a while ago, I feel like her symptoms come and go. She'll go a couple of days without spitting up, then, just when I'm feeling crazy for pursuing all of this, she starts again. Or her appetite will be nothing for a few days, and then she'll eat and be happy again. (Even on good days, though, her appetite isn't very big. It was bigger when she was younger.)

I have a 2.5 year old son, so I know kids change and everything from teething to moods can affect how they interact with food, so now I'm wondering if I'm just going crazy! There are days where she screams at food offered, cries and arches back after taking a bite, and is generally miserable. Then, it will all clear up and she's fine and happy for a few days.

I'm just wondering if there's anyone else out there who has seen this happen. We don't get the results of the blood work for another week, and in the meantime I'm totally overthinking!

Thank you!

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Hi there

It is very common for symptoms to come and go. Some celiacs don't have any symptoms whatsoever and some will react to a microscopic quantity of gluten. Our daughter used to be unsymptomatic but will now react if she sccidently consumes gluten.

In my opinion it is worth doing the bloodwork, and if it comes out positive or if the doctor continues to suspect - go through with the scope. It is a very small unpainful procedure and it'll give you a clear answer.

Good luck and good health

Natalie

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We thought we were "in the clear" so to speak with our son because he had a GREAT 12-15 months. Boy were we WRONG! He went from eating everything to relying on g-tube feeds within 18 months.

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Even now that we know for (almost) sure that my 6.5 year old DD has celiac, it still seems that her symptoms come & go. (We're not gluten-free yet -- waiting for the scope.) Some days she seems perfectly happy and never mentions that anything is bothering her -- other days she complains of headaches, tummyaches, leg pain, etc.

And she also sometimes has complete emotional breakdowns which are so irrational that I have to think (and hope!) they're related to gluten, but they don't necessarily correlate with days when she is feeling sick physically.

I think in my DD's case, at least, there is so much gluten in her system all the time that we can't tie any specific symptoms to anything in particular that she ate.

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Even now that we know for (almost) sure that my 6.5 year old DD has celiac, it still seems that her symptoms come & go. (We're not gluten-free yet -- waiting for the scope.) Some days she seems perfectly happy and never mentions that anything is bothering her -- other days she complains of headaches, tummyaches, leg pain, etc.

And she also sometimes has complete emotional breakdowns which are so irrational that I have to think (and hope!) they're related to gluten, but they don't necessarily correlate with days when she is feeling sick physically.

I think in my DD's case, at least, there is so much gluten in her system all the time that we can't tie any specific symptoms to anything in particular that she ate.

I think your Dd and my DS should get together and have irrational tantrums together. We could make our own horror films. Think of the money we could make!

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Oh wow, I am hoping my 7 year old's irrational and emotional outbursts are from gluten!! :)

She also goes a long while sometimes with no issues- but the past 3-4 nights has complained of joint pain in her ankles and knees, also had a headache above her eyes off and on for a week or so. These things come and go, last year we actually had her tested for JRA and some other things, because her pediatrician was concerned with her joint pain. Nothing ever came of the tests, all normal, and she did not have GI symptoms, I had not been diagnosed with celiac yet so we had no idea she could have it.

She is having her scope next Wed (had positive blood panel) so we will see what the GI says. Her most frequent complaint on a more regular basis is like a heartburn/reflux that she started having about a year ago, what she calls "spicy" in her throat/neck. It is alleviated with Tums or the like, but can sometimes happen every 2-3 days and other times not a care in the world.

I had intermittent symptoms before I was diagnosed, for three years- bloating that came and went, pressure in my stomach sometimes but not others, no bowel issues whatsoever though at any time.

People have such varying symptoms, it really is interesting!

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She also goes a long while sometimes with no issues- but the past 3-4 nights has complained of joint pain in her ankles and knees, also had a headache above her eyes off and on for a week or so. These things come and go, last year we actually had her tested for JRA and some other things, because her pediatrician was concerned with her joint pain.

That's interesting -- Sarah started complaining that her legs hurt when she was around 4. I never quite got to the point of wondering about JRA, but I asked the ped about it several times and he always said it was growing pains. (He did sort of manipulate her legs, watched her walk, etc. to see if her gait seemed funny or there was any particular movement that caused pain, but he said everything was normal.)

It may well have been growing pains, but in retrospect I wonder if it was gluten. We have no idea when she actually developed celiac.

She complains of the headache above her eyes too. I was worried that she was developing migraine. (I have migraines and that's where I get them.) Hopefully going off gluten will improve that too.

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