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Doctor Visit, Finally A Good Doctor


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#1 JaneWhoLovesRain

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Posted 12 January 2013 - 07:17 AM

I finally has my appt with the GI doctor this week. I made the appt in November right after I found I tested positive for the gene and this was the first available so it's been a wait!

He couldn't have been nicer, I don't think I have ever had a doctor who sat there and took the time to patiently listen and ask questions as if he had all the time in the world. He even looked with interest as the pictures of my rash, which is the total opposite of what my pcp did. I was impressed!!

He feels the likelihood of me having celiac is 80-85%, or maybe he said 90%, but it's up there. The only thing that didn't fit was the fact that the rash was BEHIND my knees, rather than in the FRONT, but all the other rash spots fit, elbows, shoulders, hips, neck, symmetrical, etc as did other gi symptoms and my vertigo/off balance issues. And thank God, he said the pictures do not look like scabies. He sent me for blood work - I'm not sure what, I assume the basic celiac stuff, but I trust him enough so that I did not have to write it down and come back google to be sure it is what it needs to be. He wanted to take it even though I have been gluten-free for some time, he said he has seen blood work come back positive when people have been gluten-free so maybe mine will. And I did do some gluten experimenting over the Christmas holidays so maybe the blood will show something. In any event, he told me no more experimenting, no more gluten, none. He also wants me to have an endoscopy and colonoscopy (been 7-8 years since the last). Not looking forward to either of these. Meanwhile, I have to have a breast biospy in the beginning of Feb and that is more or less taking front seat to the celiac stuff. He was even nice about that and told me that certainly takes precedence and the scopes can wait and to be sure and let him know what it shows, and good luck, etc. I was diagnosed with bc almost 10 years ago, very tiny and early, now something else has shown up and I am more than a little anxious about this.

All in all, it was an excellent appt and I am glad someone finally listened to me and believed me instead of blowing me off.

Jane
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Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

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#2 jlaw

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Posted 12 January 2013 - 07:25 AM

That's great Jane. So nice to hear a positive report! Keep us updated, anxiety over up coming tests is really not my strong point, I can understand your nervousness. Best of luck.
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DH dx by skin biopsy July 2012

#3 IrishHeart

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Posted 12 January 2013 - 08:01 AM

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 mushroom

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Posted 12 January 2013 - 11:46 AM

A doctor who listens :wub: How great to find someone like that. So glad for you.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 JaneWhoLovesRain

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Posted 12 January 2013 - 02:52 PM

That's great Jane. Did you go to Dr. Gusten as I suggested? just curious.

Yes, IrishHeart, that is who I saw. Thank you for giving me his name. I can see why you like him so much. Too bad there aren't more doctors like him.

Jane
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Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#6 IrishHeart

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Posted 12 January 2013 - 03:29 PM

I told you! He's the man. :wub:
I have sent 8 people to him. & 6 were celiacs. One had ulcerative colitis, one "possible celiac" ---but certainly
NCGI.

I am so glad you finally decided to go. He is one of a kind.
He " gets it". They are very good about giving you the lab test results in that office. Ask Michelle to print them off and take them with you when you go back for your return visit.

You are in GREAT hands now.

Best wishes with your breast biopsy. I, too, have been down this road.
My thoughts are with you.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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