My Little Celiac Disease Info Packet

[Emme999]

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

[celiac3270]

I'd love to

[celiac3270]

DELETED MY E-MAIL ADDRESS

[Emme999]

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

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

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

Thanks!!

- Michelle

[celiac3270]

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

[Emme999]

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!

[celiac3270]

Sure

[flagbabyds]

I would like to read it celiacmolly08@mac.com

[psawyer]

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.

[rhondaslusher1]

I would also like a copy.

rhondaslusher1@yahoo.com

Thank you!

[Emme999]

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!

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