Author Topic: Trailing gluten again...update pg 2, thanks and goodbye!!  (Read 2548 times)

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Offline marensmama

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Trailing gluten again...update pg 2, thanks and goodbye!!
« on: August 10, 2012, 03:13:05 am »
Hayden has been gluten free for about four months.  At the two month mark, we trialled gluten again. After three days, she couldnt bend over because her tummy hurt and she was having a lot of NWs.   I hadn't gone overboard with the glutinous foods but she certainly had enough that I felt that she had been adequately exposed.  And I considered it a fail, especially since she was totally fine by the end of the next GF day.

Anyways, at the last GI appointment, he suggested we try one more trial with gluten so that we have a definite answer.  My dh is somehow convinced that she had a coincidental tummy bug.  He also suggested adequate exposure again, meaning don't phase it in.  So last night and today she has been fed non-GF foods.  So far she is a very happy girl with little problem.  Last trial she was starting to show trouble at the day and a half mark and by the third day she was obviously in discomfort.  Fingers crossed that DH was right (although I think if it walks like a duck...)
« Last Edit: August 14, 2012, 03:36:54 am by marensmama »
Nicole - Mom to My Lovely Girls


Offline deb

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Re: Trailing gluten again...
« Reply #1 on: August 10, 2012, 06:46:01 am »
There are apparently stool sample tests you can have done. Imnhalf asleep and cantremember if for celiac or "only" gluten intolerance. I'll be looking into them for my girls before school starts.

Offline Katet

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Re: Trailing gluten again...
« Reply #2 on: August 10, 2012, 06:52:09 am »
takes me 36-48 hours to go "why on earth did I eat that food" when I eat food that has more than trace Gluten. ie I will eat food that says "may contain Gluten" but I won't eat foods that are Gluten foods.  I kind of feel I'm best at 99% GF, so don't feel the need to be 100% GF -I'm not a Coeliac, just someone who trialled it after heaps of sinusitis/allergies issues. .
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Offline deb

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Re: Trailing gluten again...
« Reply #3 on: August 10, 2012, 13:04:31 pm »
On my real computer working my Google-Fu, found this post for you from a GF blog that explains a bit more about stool testing: http://gluten-free-blog.blogspot.com/2006/08/testing-for-celiac-stool-testing-vs.html  I will probably go this route if I can't get any joy from the kids' pediatricians; they have been pretty accommodating in most other areas so I'm actually happy to fork out the $100 per test on my own if the HMO won't (although I'm hoping they do!). Blood tests for me were negative but the false negative rate doesn't really inspire me to rely on those results (nor do the results of gluten trials on myself).

Offline speechie

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Re: Trailing gluten again...
« Reply #4 on: August 10, 2012, 14:23:14 pm »
Hugs honey,...waiting with you to see how things go!
What has she eaten so far? Do you. Just jump in, give cereals, sandwiches and pastas?
Cathie
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Offline marensmama

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Re: Trailing gluten again...
« Reply #5 on: August 10, 2012, 16:42:51 pm »
So of course Maren gets a tummy bug yesterday, complete with stomach cramps and diarrhea.  This morning Hayden is in great spirits but said once that her tummy hurt and has some diarrhea.    I guess I just keep on the trial and see if she gets better or worse.  ???  She says now that her tummy feels good.

Deb, she had biopsies for celiac, which were inconclusive.  The blood tests were negative but of course we know about the false negatives anyways.  I don't know that a stool sample would be any more conclusive. 

Cathie, the GI said we should just switch her over to our non-GF diet, as if we just phased it in the signs of intolerance might be too subtle at first.  So the night before last she had pasta, then yesterday she had wheat bread toast at breakfast, a wheat bread sandwich at lunch, some wheat crackers at snack and wheat pasta at dinner.  Everything else she ate was naturally gluten free like fruits and veggies.

I feel better about trailing gluten this time since I know that's not what is causing her reflux.  She's going to have reflux forever anyways.  :-/
Nicole - Mom to My Lovely Girls


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Re: Trailing gluten again...
« Reply #6 on: August 10, 2012, 18:34:44 pm »
The thing with the stool samples is that they're at least non-invasive. But yes, they aren't 100% reliable either.

Offline Katet

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Re: Trailing gluten again...
« Reply #7 on: August 10, 2012, 21:42:35 pm »
Maren wasn't GF as well? because introducing a food that has been avoided in the diet can upset the system so if she has been mostly GF then the reintroduction could upset her gut physiology too.
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Offline marensmama

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Re: Trailing gluten again...
« Reply #8 on: August 11, 2012, 01:51:14 am »
No, Maren hasn't been GF.  And Hayden seems totally fine today after the episode this morning.  We'll continue to wait and see!
Nicole - Mom to My Lovely Girls


Offline Erin M

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Re: Trailing gluten again...
« Reply #9 on: August 11, 2012, 02:51:17 am »
Good luck!  (Is that even the right thing to say??

Offline marensmama

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Re: Trailing gluten again...
« Reply #10 on: August 11, 2012, 18:35:17 pm »
I'm trying not to be too optimistic here...  Hayden has been on a regular gluten-laden diet for three days now, and is happy as a clam.  Aside from yesterday's tummy upset (which fell totally in line with what Maren was experiencing with a little bug) she's had no stomach cramps and no NWs at all.  Her mood is fantastic, I think she's just so happy to be able to eat what everyone else does.

After a day and a half into the last trial I felt it wasn't working and by three days it was perfectly clear (or so I thought) that it was a fail.  Today is the third day, and she's been better than ever.  Fingers crossed that this continues.  Grocery shopping and meal planning are so much easier (and cheaper!!!) in an non-GF world.
Nicole - Mom to My Lovely Girls


Offline Buntybear

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Re: Trailing gluten again...
« Reply #11 on: August 11, 2012, 18:41:44 pm »
That is great news. Must be such a relief for you!

Offline marensmama

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Re: Trailing gluten again...
« Reply #12 on: August 12, 2012, 15:25:23 pm »
Three full days in and no complaint of tummy aches, and one NW because she was hot and thirsty. Do we call it a success!?!?!?  I can believe how much easier life gets when there's only the consideration of good nutrition!!
Nicole - Mom to My Lovely Girls


Offline Buntybear

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Re: Trailing gluten again...When do we call it a success?
« Reply #13 on: August 12, 2012, 18:34:24 pm »
Does sound like it is a success  ;D

Offline Katet

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Re: Trailing gluten again...When do we call it a success?
« Reply #14 on: August 12, 2012, 22:09:30 pm »
I think they say you need to be back on Gluten for something like 3-6 weeks before they take a biopsy, so possibly if there is an issue & she has had some healing while she has been off, then 3 days may be too early to clearly know.  That isn't to say that there is an issue, but I would probably be only calling it a success if you are in the same place in about 6 weeks time.
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