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How To Notify Family


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48 replies to this topic

#46 Roda

 
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Posted 06 December 2011 - 08:58 PM

And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.

I've had the best luck with Nurse Practictioners. There was one at our peds office who I loved dearly. She was so down to earth and very open to suggestions. She left and I was tempted to follow her to her new office, but it wasn't feasable for me to do so. Luckily my peds office hired a new NP and she is great too. We also see a NP at our allergy office. He has been wonderful. He is pretty much the feeling that if it makes you sick or hurt you dont eat it and avoid it. He is the one that really encouraged me to put my oldest son gluten free. For being an older gentleman he is very up to date on his information and very open minded.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


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#47 pricklypear1971

 
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Posted 09 May 2012 - 11:44 AM

Soooo....

I'm almost at the 1 year mark.

I haven't really notified family.... I kind of went through an angry phase??? I sort of hated everyone around Christmas...happened again at Easter (and Easter is my favorite holiday). Anyway... I'm working on it.

Soooooooo.....

I finally feel like I'm at a place where I can write my story, contact people, discuss this with a clear voice.

Sooooooooooooooo.....

I started writing my story. I plan on sending a letter with a web address where I put all the info I've gathered (I'm organizing my info anyway before I lose it).

That's where I'm at. I'm writing it and providing references and........and all I can say is that it's eerie. As I list event after event, dx after dx it starts to become so obvious. So frickin' obvious I have AI issues. And if you connect the dots... Celiac makes perfect sense.

Anyway............

I'm going to keep writing and gathering and organizing. This is my therapy.

And I'm still boycotting holidays. Sort of. That's another post.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#48 Di2011

 
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Posted 09 May 2012 - 11:54 AM

Good on you prickly pear. Be brave!!!!

BTW Excuse my ignorance but what is AI short for?
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#49 pricklypear1971

 
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Posted 09 May 2012 - 12:02 PM

Good on you prickly pear. Be brave!!!!

BTW Excuse my ignorance but what is AI short for?


Autoimmune.

I'm very AI. effin' crap.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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