Author Topic: Trailing gluten again...update pg 2, thanks and goodbye!!  (Read 2371 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. .
dc1 July 03, dc2 May 05

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
                Nick spirited angel, born August 2, 2007

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.
dc1 July 03, dc2 May 05

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

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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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Offline marensmama

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Re: Trailing gluten again...When do we call it a success?
« Reply #15 on: August 14, 2012, 03:35:57 am »
Well it's been five full days now, without any obvious discomfort, tummy aches, bowel trouble, decrease in appetite etc..  8) ;D To me, it's now a success, and Hayden can have a non-restrictive diet again.

 The reason we tried GF in the first place was to try to eliminate or reduce her reflux, as it was unknown at the time what the cause was.  Since then, our direction has changed to investigating Hayden for Ehlers-Danlos syndrome, which fits with everything Hayden has go on medically since prenatal days.  With EDS, reflux is often present due to the soft muscle and connective tissues being too lax to keep everything down.  Also, a lot of her other issues, like dental problems, poor sleep, chronic fatigue, touchiness of mood, and tummy aches were blamed on her reflux... As I am finding out, it's likely more joint pain and muscle fatigue than reflux causing her problems.  So in trialling her on a GF diet, I was thinking that we'd see less refluxing and less of the other issues that were thought to be caused by reflux.  We didn't see much difference at all, if any.  Her sleep got marginally better for a time but then worse again, and is apparently unrelated to her diet.  Back on a gluten-laden diet she has slept remarkably well.  This may be more to do with the fact that we've been giving her Tylenol at bedtime to help manage the joint/muscle pain.  But there has been no adverse affect of the gluten being present in her diet.  Not one iota different, except she's happier to be having some old favorite foods again.

She will be scoped again, but off meds to see how bad her reflux really is, and not for a year until we get a proper EDS diagnosis and have addressed her chronic pain/fatigue issues.

I cannot tell you how thrilled I am to be able to cook our meals together, to be able to eat out and not worry about where there might be foods that she can eat, or did i plan far enough ahead so that I have something she can have.  I don't need to worry about cross-contamination in my kitchen or elsewhere, I don't have to shop at three different grocery stores.  I don't have to feel so responsible every time she puts food in her mouth that I've missed something and given her gluten by mistake.  She gets to be a normal kid at school (ok, not totally normal with EDS, but she'll get to participate will the other kids and not have me worrying about an impromptu cupcake that she can't have!)

I cannot tell you all how much I appreciate all the help and resources you've given me here.  I am happy to be leaving this board, as much as I love you all for your supportiveness.  I  salute you, for dealing with food intolerances and allergies is exhausting and mind-boggling!!  Thanks again for all your help, and if you're looking for me, I'll likely be on the health boards... Hayden has a million new consults coming up!  Lol!  :-*
Nicole - Mom to My Lovely Girls


Offline Erin M

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #16 on: August 14, 2012, 03:41:40 am »
WOOHOO!! (Well, for not needing to be GF at least!)

Offline We Three

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #17 on: August 14, 2012, 05:14:18 am »
My goodness darling....you should get a medal.    :-*  So glad you can cook "regular" meals again...and so, so happy that after all this time, you appear to have answers!!! Knowledge is power.  ((((((((((((((hugs))))))))))))))))))

Offline my3girlsjde

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #18 on: August 14, 2012, 05:36:17 am »
Very excited for you :) Having that less stress on you while knowing now what's going on must be a huge relief in it's own way.

I'm so happy you were able to finally get a diagnoses and that all of your persistence has paid off. You did well Mama :) Please continue to share this story as so many could benefit from knowing that they're not crazy and they're doing the right thing in fighting for their child.

And yes, you deserve a medal. Well done
Vicki - nursing student and proud mother to three refluxers in two years





Remembering my sleeping angels: 17 Jan 06, 30 Jul 09

Offline Buntybear

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #19 on: August 14, 2012, 06:49:59 am »
Must be a relief to be back on gluten. Good luck for your next journey.

Offline Roseii

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #20 on: August 14, 2012, 08:42:49 am »
So happy for you :)
Blessed mum to two home-birthed darling water babies

hey you with the pretty face, welcome to the human race


Offline ENMS

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #21 on: August 14, 2012, 11:37:45 am »
Yay Nicole, so happy for you!! :-*
Elise



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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #22 on: August 14, 2012, 13:41:55 pm »
super update!! :)
yay!!!
Cathie
                Nick spirited angel, born August 2, 2007

Offline donna_issabella

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Re: Trailing gluten again...update pg 2, thanks and goodbye!!
« Reply #23 on: August 14, 2012, 15:46:49 pm »
Where is the "LIKE" button!?!?!

;D :D ;D :D
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