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My Little Celiac Disease Info Packet


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10 replies to this topic

#1 bean

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Posted 20 May 2005 - 12:56 PM

Hello :) I just put together a little 4 page info packet that I'm going to send to relatives. Please email me if you would be willing to look it over. I'd love to have some thoughts on it by people who know the disease intimately ;)

Thanks! :)

- Michelle :wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

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#2 celiac3270

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Posted 20 May 2005 - 01:46 PM

I'd love to :D
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#3 celiac3270

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Posted 20 May 2005 - 01:53 PM

DELETED MY E-MAIL ADDRESS

Edited by Coulter, 20 May 2005 - 02:39 PM.

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#4 bean

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Posted 20 May 2005 - 02:20 PM

DOH! I just noticed that I typed "reviewers" wrong.

I hate it when people can't spell! :rolleyes: Please forgive me!!

Also, please private message me if you don't want to post your email address :)

Thanks!!
- Michelle :wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#5 celiac3270

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Posted 20 May 2005 - 02:40 PM

Yes...I got it in e-mail so I removed my address from an above post--if anyone wants it, just PM, but having it posted makes it an easy target for spammers...good point ;)
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#6 bean

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Posted 20 May 2005 - 02:49 PM

Thanks celiac3270! You might notice that I had cut & paste a little incorrectly so some of the info is in the wrong spot - but it's all there. (And I've fixed it!) ;)

Thanks to everyone who's private messaging me!

:wub:
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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)

#7 celiac3270

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Posted 20 May 2005 - 02:58 PM

Sure :D
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#8 flagbabyds

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Posted 20 May 2005 - 03:47 PM

I would like to read it celiacmolly08@mac.com
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Molly

#9 psawyer

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Posted 20 May 2005 - 07:25 PM

Thanks for sharing. I have looked at your notes and as far as I know they are entirely correct. The stuff about asymptomatic or "silent" celiac disease is especially important for relatives of a person with celiac disease.

Something I would add would be that celiacs must ALWAYS read the ingredients on any prepared food. Friends and family need to keep the package for reference if they are hosting an event with food. Some things are obviously safe, such as plain vegetables and fruit, but dips, sauces, dressings and so forth need scrutiny.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#10 rhondaslusher1

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Posted 02 June 2005 - 05:58 AM

I would also like a copy.
rhondaslusher1@yahoo.com
Thank you!
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#11 bean

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Posted 02 June 2005 - 10:22 PM

Anyone is welcome to a copy. Please email me if you'd like one.

Another thing that I think will be enormously helpful is a letter that my doctor wrote that I'm including with the info. It says:


To the family Members of Michelle Larsen:

Michelle was recently diagnosed with Celiac Disease, a genetic disorder with a number of long term complications if not detected and treated early. I strongly advise Michelle's first and second degree relatives to undergo screening for Celiac Disease. This screening typically involves a blood test called tissue transglutaminase IgA, or t-TG, and can be performed by any primary care provider.

Thank you for your time and attention to this matter.

Sincerely,
Suzanne Martin, RN, FNP-C


In fact, my dad's doctor (who is an absolute moron and told me that my dad didn't need to be tested because "Celiac isn't hereditary") actually ordered this test after my mom handing him this letter. Yay!! And because he had this letter, he actually ordered the right test! I'm sure he wouldn't have done so otherwise because he is a total LOSER! :angry:

But, now we are awaiting the results and hopefully my dad's life will change for the better :) Wahoo!!

Anyway - email me if you want a copy of my info packet. Right now it's at 7 pages but I think I'll only be sending the first four. I don't want to overwhelm them! Or -worse- have them say, "Oh, this is too much.. I'll look at it later." (Then never look at it!)

You guys rule!!!!! I am so glad I'm in this forum :)

- Michelle :wub:

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~~~~~~~~~~~~~~~~~~~~~

Michelle :)

Positive blood tests 4/29/05 (tTG & IgA)
*Osteoporosis (at 32!)
*Heartburn/Reflux (*ouch!*)
*Lifelong battle w/depression
*Dental enamel didn't form right when I was little (cavities cavities cavities)
*Neuropsych analysis lists all sorts of learning disabilities - which may be attributed to brain injury from an old accident or may be from celiac, who knows!

Had biopsy May 11th, 2005 - villi are FLAT! :(
gluten-free since May 11th :)


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