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Julie--need your input
So Mara is showing all the signs Peyton did before the Celiac diagnosis. She is getting every illness going around, she isn't gaining weight, she is getting eczema--everything just like Peyton. I am convinced she is going to be our next Celiac, even daycare asked about it. I know that false negatives are common at this age so testing seems like a lost cause at this point....but, as you know, if she goes on a GF diet, she can't be tested down the road, etc. Would you be inclined to put her on the strict diet (we eat mostly GF at home, daycare only does GF when Peyton is there) or would you push for testing, knowing that it's likely to be off (her first blood test, at 15 months was negative).
I know insurance can be a hassle if there is no official diagnosis but I hate to see her have these side effects when this could easily be what it is...
Re: Julie--need your input
That's really tough, and I don't envy your position. I mean on the one hand you know what's going to make things better, but it means giving up the chance for an "official" diagnosis. Here's how we've handled this: both kids had major problems with any gluten exposure, even cross contamination, from the get-go. So we kept them both GF. Our position on this was reaffirmed a few times when well-meaning grandparents would accidentally give them something gluteny and we'd have a few days of hell while they got over it. (Nonstop screaming, rashes, inability to communicate/process information, etc. They become completely unmanageable; the change is breathtaking!).
Well then Henry turned 5, and in the past few months we'd finally been able to add tomato and peanuts into his diet, which was HUGE. So we figured maybe gluten would also be outgrown, and decided to put him on a gluten trial. He's been on it for 6 weeks now and everything seems okay. The plan is to have the blood tests done at 6 months on gluten, and then annually because there is a family history. Avery meanwhile is still as sensitive as ever (she and I are having a hell of a time not getting CC'd now that he's eating gluten at home, ack!).
This approach has worked very well for us. It kept the kids healthy and safe during a time when we could have been put through the wringer with tests, stress, and illness. Once a year we would do an intentional gluten exposure, something small like one cookie, and when the reaction came we knew we needed to stay GF. And with Henry, when the reaction didn't come this time, we just kept it up and he'll get tested. When they're so young it's very easy (relatively speaking) to control their diet and maintain GF, and you obviously don't need a doctor's permission or diagnosis to do so. A dietary trial is absolutely the most reliable and accurate test there is. Since there is family history, once you get M GF and her body has healed, an exposure and reaction to gluten *should* be enough to get a doctor's diagnosis.
I've got a lot to say about this, sorry! Good luck!
That's my thinking too. Since we have an official diagnosis with Peyton, I think we have some ground to stand on. Mara will be 2.5 next month and still weighs under 21lbs. She gets every illness, rashy, etc etc. I'd be naive to think these aren't symptoms. Daycare said yesterday that she is going to do GF again (Peyton doesn't go there now that she is in school) and the husband and I figured we would just add her to the GF strict diet around here. We go back to the pedi next week for Berkeley's 4 year check up and I plan to discuss this with her.
Luckily she is a great advocate for us so I think she will think this is the best plan and push with insurance if we seem to think she needs anything that route.