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Old 06-16-2008, 11:11 AM   #1
yoopers
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gluten sensitivity or celiac help.

Hi,
If anyone has any favorite celiac sources, please send them my way. Right now I am not sure what my son has. I first suspect lactose intolerant, but I guess that can go along with celiacs. I am not sure that his ped ran the most accepted tests. I am overwhelmed trying to sort through the confusing celiac sites that I found using google.

The nurse called with blood results and said that his high IgG antiglaiden could suggest celiac's disease and that we should try a gf diet for 1 week and then call them. The loose stools are changing and one even was total normal. We have an apt on Wed. and I am trying to make sure what questions I need to ask.

-sarah

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Old 06-16-2008, 11:21 AM   #2
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Re: gluten sensitivity or celiac help.

My dd is 20 months. She has had symptoms for 10 months of that and was diagnosed at 14 months. It has been a long journey for us. Here are some helpful places:

http://www.glutenfreeforum.com/
http://www.celiaccentral.org/

My blog about celiac:
http://www.carepages.com/ServeCarePa...eemailtemplate

There is a bunch more but i do not want to overload you but feel free to pm me to chat or we can talk by phone...
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Old 06-16-2008, 12:39 PM   #3
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Re: gluten sensitivity or celiac help.

I can only share with you some experience from a freind of mine. she had a son with similar issues. they finally "loosely" dx'd him with celeacs so they took him off all guluten for over 2 weeks and his stools became normal and his behaviour changed tremendosly!

So the doc said - "great, but I dont really trust blood tests so lets do a colonoscopy" (or somthing invasive like that) "but you'll have to put him back on gluten". Parents said no way! "You may not trust the blood test (because it's only 90% accurate or some such thing) but we do AND we trust his progress over the last few weeks...."

FWIW - Good luck
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Old 06-16-2008, 01:15 PM   #4
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Re: gluten sensitivity or celiac help.

The deal, as I understand it, is that the blood test tests for the genetic marker (being a carrier does NOT mean one is a celiac, thus it rules celiac disease OUT, not IN), thus why a biopsy is necessary for a true diagnosis. And yes, one must be flaring for the test to be accurate.

Regardless, seeing if the diet helps is worthwhile. I would not stop at a week, though, I'd give it at least 2 or 3 if you don't see any improvement after 1. Takes awhile for guts to heal, and even so, I wouldn't expect complete improvement after that short of a period -- but you should see some improvement, certainly, should he be reactive to gluten in one fashion or another. A child can most certainly be gluten intolerant without having celiac's disease -- meaning the possibility of outgrowing exists.

One major benefit of knowing if it is celiacs or not is that you know whether or not to bother trialing gluten in the future. One trial to flare for a test might be frustrating and damaging to the gut, but nowhere near as damaging as continuing to trial gluten in a celiac child for years to see if they've outgrown a condition they will never outgrow, KWIM?
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Old 06-16-2008, 01:56 PM   #5
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Re: gluten sensitivity or celiac help.

My dh's cousins two kids have celiacs but we don't talk to him so I don't have access to getting info sara
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Old 06-17-2008, 10:24 AM   #6
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Re: gluten sensitivity or celiac help.

Thanks for the links. Today is one week of his gf. We plan on continuing it, just that the ped wanted to have our apt after 1 week gf. I took most dairy out also. He is 2yr9mon, so he can't really tell me how he feels. If anything, his attitude has taken a sharp downhill slide. Some of the replacement food he will eat just fine for a few meals and now he is just leaving it on the plate. Bread was his favorite food before this.

Lunch just ended with all 3 of us (2 yr old, 8 month old, and myself) in tears.

-Sarah
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Old 06-23-2008, 12:24 PM   #7
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Re: gluten sensitivity or celiac help.

[QUOTE=yoopers;3877584]Hi,
If anyone has any favorite celiac sources, please send them my way. Right now I am not sure what my son has. I first suspect lactose intolerant, but I guess that can go along with celiacs. I am not sure that his ped ran the most accepted tests. I am overwhelmed trying to sort through the confusing celiac sites that I found using google.

Sarah
think about having him tested https://www.enterolab.com/Home.htm Good luck even if your insurance don't pay spend the $99.00 on the stool test
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Old 06-23-2008, 12:25 PM   #8
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Re: gluten sensitivity or celiac help.

http://www.clubceliac.com/clubceliac.htm
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Old 06-23-2008, 12:31 PM   #9
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Re: gluten sensitivity or celiac help.

http://www.clubceliac.com/clubceliac.htm
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