Author Topic: Trailing gluten again...update pg 2, thanks and goodbye!!  (Read 2883 times)

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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



Offline speechie

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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
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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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