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#1 mom2aae&e

 
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Posted 10 December 2013 - 02:23 PM

Hey everyone, I'm new (as if my title didn't explain that already!).  I have four daughters, A and A are 5 year old fraternal twins, E would be 3 (she passed away at 9 months old) and E just recently turned 1. My oldest twin had positive blood work on Nov 20th.  We received the biopsy results on Dec 4th that she has a Marsh Score of 3B.  I was surprised at the results of the biopsy given her seemingless minor physical complaints.

 

Her twin and the "baby" had their blood drawn yesterday and I'm waiting on the results of those.  I already tested negative and my husband still needs to be tested.

 

Honestly, like many others in the beginning, I'm quite overwhelmed.  I'm pretty confident in being able to make the changes within the home.  It's the daycare/school issue that I worry about the most!!


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Jess

Daughter1 (5): positive blood work 11/2013, positive biopsy (Marsh Score 3B) 12/2013

Daughter2 (5): positive blood work 12/2013

Daughter3        passed away at 9 months old - would be 3yrs

Daughter4 (1): negative blood work


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#2 massagemamaof3

 
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Posted 10 December 2013 - 07:28 PM

Welcome! I am also new here. My dd is 11 and we just got her biopsy results back yesterday so we are new to the whole thing also. I have been keeping in touch with the school nurse and luckily for me she has some experience with celiac and has been super helpful. There's such a huge difference between 5 and 11 that the one thing I can offer is to keep in touch with the teachers, daily if have to. That way you can keep tabs on what is going on in the classroom. The school nurse recommended a 504, there are a few discussions on here about it. I am waiting for my ds dr to call back so I can schedule his blood work.  I feel like we have been on a rollercoaster for the last 2 months!


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#3 africanqueen99

 
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Posted 10 December 2013 - 07:47 PM

Welcome!

 

I have my house under control (although I just spent two hours online trying to find gluten-free lotion to deal with our cracked hands) and am in the process of working with the schools.  My oldest is in second grade so we're working on her 504.  The youngest starts a kids morning out program in the fall and I'll develop one for her this Spring.  Luckily the educators in our district seem to really want these guidelines so we're all on the same page.

 

How are you coming along getting your house in order?  Make sure your other girls are still getting gluten just in case you're going to scope them, too.


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Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (8 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (4 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.  DX with gastritis.

Kid 3 (2 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 


#4 massagemamaof3

 
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Posted 11 December 2013 - 06:11 AM

Welcome!

 

I have my house under control (although I just spent two hours online trying to find gluten-free lotion to deal with our cracked hands) and am in the process of working with the schools.  My oldest is in second grade so we're working on her 504.  The youngest starts a kids morning out program in the fall and I'll develop one for her this Spring.  Luckily the educators in our district seem to really want these guidelines so we're all on the same page.

 

How are you coming along getting your house in order?  Make sure your other girls are still getting gluten just in case you're going to scope them, too.

You should try grapeseed oil or safflower oil. I am a massage therapist and i have used both of those oils on my clients and on my own hands, or on my lips if I have forgotten my chapstick.  I have even had a couple of clients that have started using grapeseed oil instead of lotion. 


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#5 mom2aae&e

 
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Posted 11 December 2013 - 07:28 AM

Thank you for the welcome!

 

I just received the blood test results on the other two kids.  The other twin also tested positive.  The baby tested negative.  The second twin to test positive hasn't had any symptoms.  So I was actually quite surprised.


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Jess

Daughter1 (5): positive blood work 11/2013, positive biopsy (Marsh Score 3B) 12/2013

Daughter2 (5): positive blood work 12/2013

Daughter3        passed away at 9 months old - would be 3yrs

Daughter4 (1): negative blood work


#6 massagemamaof3

 
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Posted 11 December 2013 - 10:26 AM

I'm sorry to hear that. My daughter didn't really have any symptoms either.  That is until I started researching it and realized that her headaches and occasional heartburn were symptoms.  She wasn't ever really sick though. It came as quite a shock. 


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#7 StephanieL

 
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Posted 11 December 2013 - 05:43 PM

Hi and welcome to you all :)

It's a tough transition but you will get it Mama's! My DS was dx 3ish years ago. Please let me know if I can help you at all. There are so many people here with such a huge amount of knowledge it's really amazing!
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#8 nvsmom

 
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Posted 15 December 2013 - 10:40 AM

Welcome to the board. Sorry you are here, but welcome.  :)

 

You might want to consider making your youngest gluten-free too. Celiac testing is not as reliable in babies and toddlers compared to adults, or even older children. Did she have the DGP IgA and DGP IgG run? Those seem to be the best at detecting early celiac disease. There is also the chance that "E" could be a celiac but not have positive blood tests for years.

 

I am a celiac and 2 of my 3 children had symptoms but they all tested negative. Coincidentally, when I removed gluten from their diets they were quite a bit better within weeks. I am guessing they are celiacs but just tested negative. They could be non-celiac gluten intolerant (NCGI) but with celiac in our family, I doubt it. Anyway, there was enough of an improvement to their health that they are staying gluten-free... No one needs gluten anyways, it's just a food of convenience and tradition.


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