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seezee

Member Since 26 Jun 2009
Offline Last Active Jul 13 2014 07:16 AM
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Posts I've Made

In Topic: Sick At Grandma's House?

12 July 2014 - 04:24 PM

I don't really get sick from gluten noticeably and neither does my nephew any more. I am an asymptomatic celiac diagnosed with bloodwork and biopsy. My nephew now 10 was diagnosed at 3 and doesn't really have a such a strong reaction. My daughter who is 15 though it's like she has food poisoning when she gets a little, so she doesn't sneak. I'll try to get my mom to replace the wooden spoons and cutting boards... that sounds like it may be the culprit... my mom doesn't buy anything with gluten so there's not any around. She does get gluten free oats and maybe that might be it. I think some people react to oats who have celiac. Is there a way to check for that?


In Topic: How Did You Challenge Your Child And Get Through It

12 July 2014 - 05:12 AM

The Childrens Hospital celiac support group posted this article a while ageo: http://www.scienceda...40113154219.htm

 

"A new blood test being developed by Walter and Eliza Hall Institute researchers can rapidly and accurately diagnose celiac disease without the need for prolonged gluten exposure."

 

Anyways, if your child is really sick from gluten perhaps you can wait to test for a while. My sister was able to get a diagnosis based solely on my nephew's reaction to the gluten-free diet and positive bloodwork.


In Topic: Only Igg Positive In A 5 Year Old

20 March 2014 - 01:02 PM

I have "silent" celiac and am IgA deficient. My doctor misread my tests 4 years ago when I asked to be tested after my daughter was diagnosed in 2009. I asked her to check again a year ago and the IgG was positive - the rest she thought were normal. After she called and wasn't sure what that meant since IgG is non-specific, I decided to go to the celiac clinic at Beth Israel where they followed up with the anti-DGP test. This is what they told me (I think). If IgA is low then the TtG test is useless since TtG is a type of IgA. The IgG is non-specific to celiac, but IgG high combined with IgA defficiency is indicative of celiac since celiac can cause IgA deficiency... The anti-DGP is less sensitive but highly specific. If DgP is positive then you have celiac 99% of the time. Anyways, the lesson is that regular doctors can be very confused by lab results. Even the specialists were confused by the results from the primary physicians labs bc they used non-standard notation and failed to flag the very, very low IgA as abnormal which is why my doctor wasn't aware this made the low TtG useless. The doctors had to contact the lab to interpret the results from the tests my primary doctor gave. The GI/celiac specialist says doctors often misinterpret results. Anyways, anti-DgP was positive and biopsy positive.


In Topic: 504 Plan

31 December 2013 - 09:07 AM

Another thought. I think often some adults tend to over-react. I'd add something about maintaining X's privacy and not singling her out. We had some phrase like that in our 504. When my daughter was younger teachers would sometimes send her to sit off in a corner or announce to the class that Y's mom brought pizza but because A has celiac and it's not gluten free we can't eat it.

 

Also, the Children Hospital Boston has a pretty good page on this:

 

http://www.childrens...-disease/school

 

and they have a school packet here with other resources.

 

http://www.childrens...m/support-group


In Topic: Sleepaway Camp

31 December 2013 - 08:53 AM

My daughter went to camp celiac for a week in Rhode Island. I think registration starts in Feb. She really liked meeting other kids with celiac and it made her more sure of herself. It's pretty much a regular camp other than everyone has celiac.

 

http://campceliac.org/

 

Sarah