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Late Diagnosis?

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Pam M

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Posted 01 April 2013 - 07:45 AM

My son has gluten intolerances and I have just found out that I am celiac. How common is it to be diagnosed this late? Also, I need to be very careful with contamination with my son (ie no sharing toasters etc). Does the same contamination risk apply to celiac? Thankyou
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    "The past is the past...I've got places to be."

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Posted 01 April 2013 - 07:53 AM

Welcome Pam!


Unfortunately it is not uncommon to go undiagnosed with Celiac Disease -- I was diagnosed at 43 after decades of symptoms dismissed as something else.


Yes, understanding gluten cross contamination is extremely important in Celiac Disease -- it is also possible your child has Celiac and not Non Celiac Gluten Intolerance -- many children do not test positive to the current antibody tests -- especially if the doctors did not run the complete panel to begin with.  Since your son has been off gluten for some time, it really doesn't make any sense to reintroduce gluten to complete the panel.  You might want to talk to a celiac specialist regarding both of you.


Let us know if you have any more questions!

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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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Posted 01 April 2013 - 08:51 AM

Hi Pam,


I hope you are well.  I am glad you discovered your celiac.  I noticed symptoms over most of my life time, certainly 30 years back, and was diagnosed when I was 49!  It was quite a surprise.  I had no known family member with it.  Well, now we know, and we can learn and follow the diet and hopefully, heal up.



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Posted 05 April 2013 - 05:17 AM

I am 59, it took me a few years as well 

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gluten free since 11/12  

dairy and soy free since 1/13

chocolate free since 6/14


I miss my chocolate!!!   but I'm not sick anymore, and that's what really matters  :)




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Posted 05 April 2013 - 07:22 AM

I too am a celiac and all of my children tested negative to celiac, although two of the three have pretty obvious gluten intolerance. I think there is a chance it is celiac for them but it doen't make a difference in the long run on their treatment: gluten-free for life.  :)

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Celiac - June, 2012
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